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Friday, December 7, 2007 12:47 AM CST

I would like to thank everyone for their wonderful words regarding the picture I put up for Christmas. Everyone found such detail. Is it because people who consistantly visit these sites realize how precious time is? If we were all happy go lucky and knew of no one's children that died, would you just see the picture and say, how nice. I bet we look, I mean really look. What I need to do is be more vocal about it. 'Baby doll' is perfect. I had never thought of that. I always thought she looked like she was about to cry. But I do remember getting the picture taken and she was in a wonderful mood, not wanting to sit still.

Yesterday I ran across an article on msnbc about the death rate decrease in childhood cancer. It was a nice read until they gave the number of pedi cancer deaths in 2004. The breath was sucked out of me when I read the date. How many of those kids did I know through the internet? Unfortunately I have a board at work filled with their pictures. And Savannah was one of the 2223 children that sucumbed to the beast. I remember 19 were at AR Children's hospital also. It brought a flood of tears. I was glad it was after work hours and no one was at the office but me.

The holidays are upon us. What a happy time to share with friends and family. Also what a sad time for those mourning. I hope all those with holes in their hearts do find moments of happiness and smiles without the guilt that usually goes along with it. Over the thanksgiving holiday, we watched so many home movies with my parents and cousin. My mom took it hard. I enjoyed them with no sadness. During the rest of the visit we cooked and cooked. We had a blast. Got the decorations up. Just still need to get the outdoor ones up. Falling behind.

Peace to all and remember the reason for the holidays.

Monday, November 19, 2007 1:35 PM CST

What a performance! It was a dream come true. And the company I was with was even better. Words can not even touch on that. Even my mother talks about how the girls would dance along. She and my sister are going to go in Jan. They are going to love it.

The memorial service was difficult but beautiful. It was so hard to see the 22 candles. That is more than the year Savannah died. Are we really making any progress? I shed a lot of tears yesterday. Yesterday was also a very strange day of circumstances. Which I won’t go into except to say thank you to the one person that lived it with me. I was exhausted by the time I returned home. And to top things off, I think I am getting a cold. I think I may have to ask to borrow a hot tub this evening.

My deck and gazebo are just about complete. Beautiful. It is so nice to have some progress on the house finally.

The holidays are upon us. They are wonderful times for some families and horrible times for others. And then for a select few of us, very mixed times. Times so full of love and so full of anguish. There will be those families who chastise a parent for being sad and not getting ‘over it’. And those friends that will embrace those parents. There will be those families that will have just been given the news of a diagnosis and those that will just be told to take their children home, there is nothing more that the medical community can do for them. There will be those families that will get a call telling them there has been an accident. There will be those families that know in advance that this will be the last Christmas their child will live through. And there will be those that have no idea that their child will not live to see another Christmas.

What I am trying to say is embrace the holidays. Love your families and friends regardless. Show patience to those that are in pain.

And as ridicules as this may sound, the group of parents that have lost a child to a dpg were, in a very morbid sense, given a gift. I have written it before but it is worth mentioning again. We were all given the reality that time was critical because the final date was in sight. We could make everyday special because we had to, we chose to. The best days of my life were the worst days of my life.

As Thanksgiving time approaches, I want to share some of my blessings.
My friends from all over. They have been the cornerstone of my life. My saviors in so many ways. So many. A friend for almost every thing that happens in my life. Those that let me retell a story again and again and again. Those that let me escape. Those that hide Cassie or me out. Those that just sit and look at the stars with me. Those that are here for a lifetime and those that are here for a brief time frame. Those that I can share my fantasies with and fears with. Those that I can share my happiest of times with and will allow me to vent. Those who time may pass for years until we are reunited only for it to seem like a moment has passed. And those who can take away my breath in my presence.

Family falls into many of the above statements as well. In fact, many friends have become family to me. Huge thanks for my family, who is always there for me in one capacity or another. I really am one of the luckiest people on earth.

Bless you all.

Tuesday, November 13, 2007 10:28 AM CST

This evening is Cats! Cassie and I are so very excited. I doubt we are the only ones. And I hope it brings me out of my funk. Even last night I just felt so overwhelmed that I cried. But the best part is the company that will join me at the performance. Nothing beats sharing something special with a dear friend. And to be graced with his presence for another day makes it even extra special. It makes me smile.

This Sunday is a memorial service at Arkansas Children’s Hospital. I decided to go. It will be so painful, but running from pain is not the answer. Maybe the tears will also be that we were blessed to have these children for the short time that we were allowed. The last time I went, I was still fairly new to this grief thing. Now it won’t be so raw, so numb, so filled with relief. I am hoping it will be just happy and sad. I don’t think you can have one without the other. It will be so good to see Carrie again. She took such good care of us all during those 18 months. I decided to just go and enjoy the day. Go shopping. Go out to eat.

Friday, November 2, 2007 2:56 PM CDT

All Souls Day today. Hi ya baby! Mommy misses you.

Our visit with one of our ‘Angels’ was beyond words. Cassie was just beside herself wanting to cook for company. And forever will the sight of Cass and Mark whisking away at alfredo sauce be etched in my mind. Thank you dear for visiting. Thank you for the smiles, the peace, and the ‘getting it’. And a huge thank you to Saige for the poster. I am sure your dad told you when I get it framed it will be the first thing to hang in the house extension.

The end of the month was rough. Five yrs. It is so hard to believe. When you think that time heals, it smacks you in the face. The images play in your head and can’t be stopped. It is like yesterday. But what actually does change with time…the extended intensity. I couldn’t seem to make it through an entire order without a flashback. Believe it or not, I can sometimes make it through a whole day now. And if I realize what has happened, I am not overwhelmed with guilt all the time. It still happens but not as often. The complete breakdowns don’t have me hugging the commode anymore. Just drooling all over myself. And instead of them lasting several hours, they are lasting less than an hour. And I can remember savannah now and smile without sadness or pain sometimes.

The 29th was the hardest day I have had in over a year. I suppose I was due. For a few days there Cassie was wanting to watch home videos of when they were children. As soon as she realized what the dates were, she ceased. But that is still progress. for so long she didn’t even want her sister’s name mentioned. And she can still get so freaked out at my tears or sad face. She is such a good kid (except when she is rolling her eyes at me or giving me her glare which is an attempt to burn through my skin). I can’t be too too hard on her. Welcome to 12. I am supposed to start getting dumb now. and the embarrassment level should start to raise exponentially. I am trying to prepare myself.

I didn’t go to the bike rally due to some circumstances. It was hard to miss, but I didn’t need to be there. I will just have to go the entire time in June.

Thanksgiving is approaching. My parents and cousin will be gracing our household this year. Susan and I decided we are going to cook foods the way my grandmother and mother cooked them. I don’t want these wonderful foods to be lost. I told mom she didn’t need to cook, just answer questions and sample. Dad still wants turkey. No problem. I understand tradition. That reminds me. I have been stuck on ‘the fiddler on the roof’ soundtrack in my brain for about a month now.

Things have quieted down with Jerry. Okay, it may be a lull but I am enjoying the tranquility. Still missing the man he was with Savannah. In fact, ACH HEM/ONC just sent him and me an invitation to a memorial service on the 18th. I wish we were on better terms. He would be the one person who experienced what I did.

Friday, October 5, 2007 12:53 AM CDT

October already. It is finally starting to cool down a bit. The evenings are so pleasant. Cassie and I are doing well. It feels good to laugh and smile again. It feels good to cook again and have someone enjoy my food. It feels good to have music playing in the house. It feels good to get out and do something fun. It feels good to just hop out of bed in the mornings without dragging. It feels good not to wonder what type of person I will be coming home to. Relief. Peace. But also accompanied with such a deep sadness. A longing. But it is longing for a dream. A dream that can never come true. It is way beyond anyone’s control. So move on Lisa.

The middle of the month will bring a visitor. Cass and I are so excited. She wants to cook. So she will. I can’t get the smile off of my face. But with that also brings a tremendous amount of sadness because it was to be so much more. It is just like meeting a family of another angel. The pain is so very great. Shared grief. Shared healing.

The end of the month brings the annual Halloween run in Sparks, OK. Time to break out the camping gear. I may not be married to a biker anymore, but that doesn’t mean that I have to give that up. It isn’t going to be just us girls this time. It is up to six or eight of us already. And at lunch I saw another friend of mine. He will also be there. He has a new Harley and I asked him for a ride once we all got there. I do miss it. Of course, I won’t be behind my husband and that also is breaking my heart right now.

I went with a friend to a new tattoo parlor in town last weekend. He got a beautiful tat across his back. Made me get the itch. I still have a dragonfly to get per Savannah. Just don’t know where I would put it. It has to be hidden when appropriate. It has to be visible because it should be shown off. It needs to be on a place that is not going to expand or contract. I can only come up with the back of my neck or the back of my shoulder blade. Both sound very painful. Maybe I just need to blow it off. It may be a good way to spend her diagnosis anniversary. That won’t work. The 29th is on a Monday. They would be closed.

Hmmmm. Just got my calendar out from 2002. On the 18th, Savannah became ataxic. On the 19th was my friend Laura’s party. That was the party that I met Audrey and Kevin. It also happens to be the party I met Jerry at. Wow. That must have been one of those monumental nights without me even knowing. The course life took due to that party is amazing. On the 21st is when I took her to her pediatrician. I had surgery on the 25th. the following Monday I took Savannah back to her pediatrician’s office because she was getting worse not better. The next morning I got a call from Children’s hospital to bring Savannah in for a MRI, they had a lunch time opening. And on that day, October 29th, my life was forever changed. Forever will I wear the scars. Forever will my heart openly bleed. Forever will I not take life for granted. Forever will I recognize gifts from God. Forever will I be sure to tell my friends and family that I love them because I do and I need to be sure that they know. Forever did my views of death change. Forever did I learn a lesson. I learned to take more chances, to live because tomorrow is not guaranteed. Sometimes Cassie still has a fear. But these three years plus have mellowed that a bit. Those we love may not be meant to be with us. Period. No matter how much we may want it. They are ours only to borrow for the short time we have them. We don’t even know if we are granted a lifetime or a day. I miss Savannah. But she doesn’t need to be here with that damn monster on her brainstem.

It is Friday and I don’t want to start the weekend down. I am happy today. Smiling.

Monday, September 17, 2007 3:49 PM CDT

TUESDAY SEPT 18th

HAPPY BIRTHDAY SAIGE!!!

from the Hurley girls in the southern Ozarks
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I have spent the last couple weeks watching home videos from when Cassie was three months old up to last year. It is so hard to believe the changes. I watched family life during the good times with Mark. I watched just the girls and I. I watched Savannah’s illness. I watched normal life to the best of my ability during her illness. I actually watched one I had never seen prior. Savannah had a seizure. It just tore me apart. I watched Jerry’s interaction with the girls. Life was sane then in insane circumstances. Life has become insane over the past several months. I have to find Lisa again. And I will.

I have a lot of pain. I wanted Jerry to hold me when I drew my last breath. I can’t figure out why he left me. But logic plays in no part of this. Some people just need to move on, I guess. And the breakup to them must be absolute. The people close to me know what has transpired. And they know that I say nothing bad. He cannot help it. I love him with all my heart. He was one of the angels in my life. Perfect for a time. I suppose it was hard to remain the person he was back then. It was always a fear of his. I guess I didn’t believe that he could be someone different.

I have had to say goodbye before. I have to say it again. Life has a way of taking those that you love from you in one way or another. Or are they really ever ours to begin with. We assume that. we expect that. but maybe they can be ours for just a short period of our lives. It is odd. When I should hate, I love. Even though it is over. I will always hold that person close in my heart because they are a part of who I have become today. no regrets. A lot of sadness. But no regrets.

I move on alone. Hmmm. No. I have dear friends that I love with all my heart. Those that sit and sip wine on my front porch with me, those that email me words of encouragement, those that call just to talk, those that hold me and let me cry. Those that post right here. They are my world. They are my family. Through them I get strength. Through them I can smile and even laugh. Through them I have the security that comes through years of togetherness. And trust. Oh, what a good one. Yes, my friends, I trust. That is why I know that someday in the future I can trust once more.

Monday, September 10, 2007 8:54 AM CDT

Thur Sept 13

It is done

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Wed Sept 12
Sigh. i am sinking today. so much pain. tomorrow i lose my mate. i never wanted this to happen. i am dying on the inside. i wanted this man for life. i wanted no other. never did. he was my everything. tomorrow i will watch my marriage die. final. over. then the shock will start. the numbness. i am so exhausted due to the past. but it will not change my suffering in the future.

i want to hear his voice. i want to curl into his arms. i want to feel his touch. i cry. but i have missed him for so long already.

i cannot live like this. i am so sorry i was not a stronger person.

everywhere i turn i hear more. i am aghast. i don't know what to believe. this is crazy. but i need to find myself once more. today i am so low. but i will at one point hold my head high and face the world. i want to retreat to my closet and close out the world. it would be comfortable.
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Tuesday September 11
Please remember all that have fallen on the anniversary of the attack. Those in the buildings, those on the planes, those that went headfirst into the danger zones to save others, the families of those left behind.

i have noticed something very strange with my daughter. she is wanting to watch videos of her and her sister prediagnosis. she has been laughing and talking about her. she has been sharing stories of Savannah. she has wanted others to see her when she was little. this morning she even took a picture of her to school to put in her locker. Cassie threw a fit when I went to smoke. she was telling me that I couldn't leave the video even though i told her i just watched it. she was insistant that we watch it together. side by side. arm in arm. no tears. no overwhelming sadness. just smiles. remember this was prediagnosis. when life was perfect. it was interesting watching myself as a mother. i really never did leave the floor.

poor savannah. everyone seemed to ignore her. must be the second child syndrome. we heard her say, 'daddy, where's Cassie?' six times before he answered her. after she got an answer, she asked no more. i was just as bad. but at the same time we were all about her. my neighbor told me they have a video almost exactly the same with her second constantly asking her something. and she is ignored. then the oldest asks and is tended to immediately. i would have sworn this never happened, but i have damaging proof. hahahaha.

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a new 'old' picture. it is apple picking season now. we would take the kids to an orchard in IL every september to pick apples. they LOVED it. Don't know what Cassie is doing holding a coke. must have been mine. she doesn't drink soda. oh, the apple pies i would make. we would have Jonathons in the fridge for months.

i watched home videos this weekend. broke down on saturday. but was fine doing it on sunday. cassie has grown up so much yet is just the same. little savannah will always be timeless the age she was. sigh. but what a spitfire.

Cassie began year two of Cotillion on Sunday. She was so excited. She told me there are about half of the kids as last years class. i figured that would be the case. They learned how to eat with chopsticks. she is already anticipating the balls this year.

last sunday i was hanging out with my neighbor on her front porch. it was hot. i asked her if it would be too white trashy of us to hang out in her pool. she just laughed and got out the rafts. we donned our bikinis and hopped right in. can you imagine two 40 yr olds in a baby pool on the driveway. we floated around with our bottles all afternoon and just had a great time. her daughters even came over to see the nutcases. My daughter would have been mortified, but would have been the first to get over it and join us. needless to say, i am not the sun godess and got burned. it is a good thing i keep a supply of aloe vera. yes, we are the neighborhood nut cases.

i have been spending as much time as possible away from home and when we are at home having company. hopefully, this can end soon.

i also started weaning myself off cymbalta. one week at every other day. so far so good except today i can really feel the side effects of the medication. i almost want to just scream. this may not be the best time to do this. i have been on it since May. it works well in keeping me calm. it was so difficult to get me angry. on things that should have made me furious, i just really didn't care. anger took too much energy and i didn't feel like i had it to give in. tears were next to impossible. but the heart palpatations ceased. side effects were minor but the longer i was on this medication, the more iritating they became.

on thursday jerry and i are scheduled to become legally divorced. i hope everything goes okay. i hope he may find peace. he deserves it. watching movies of savannah this weekend was very enlightening. no matter how much i loved her, i could not help her. no matter what i did to control her disease, i had absolutely no control in what was happening. all i could do was just be there and suffer through the roller coaster. but in the end she had to move on and i was left behind to raise Cassie. broken, battered, and in pieces. alone. and i find myself in such a similar situation today.

Friday, August 17, 2007 7:20 AM CDT

August 28th
I finally posted another poem from Saige. I have had a printed copy hung up at the office and decided it needs to be shared. afterall, this site is set up for Savannah. Enjoy. And peace and hugs to you, my dear Saige.
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Officially 43 now. I had a great birthday. I was on the phone until after 9:30pm last night. Nothing monumental happened. It was just a very good day. I did get to sneak away with Cassie and get some ice cream for supper at Sonic. That is what I wanted.

School starts on Monday. Cassie is excited. Wed I took Cassie and her friends to the Sacred Heart swimming party. It was 101 when we arrived. It was good to see the teachers, students, and parents again. One thing I like is that this really is a family. Even though we are from out of town, everyone knows Cassie. We have all been together since her kindergarten. They all watch Savannah deteriorate. That is why we had her funeral at that parish instead of mine here.

The DPG conference was wonderful. It was exhausting. I think emotional exhaustion is the most draining. Only one new child was represtented this year. Everyone else came back from last year. That means Carla, Toni, and Tim did an excellent job in 06. And again this year. I bet we all return next year. Last year concentrated on grief and healing. Lord knows we need it. And the bond with these parents is amazing. Only we truly experienced the same thing.

This year seemed to dwell more on grief in the family and the myths and reality of grief. We spent a lot of time on anger. our trigger switches. Darcie Sims was the keynote speaker. This woman is amazing. And she 'Get's it!'. Of course she does, she is one of us just a lot further out.

We spent the last morning discussing where this group will head in the future. What gives me hope is just that. We came together for the first time last year to meet parents of the children we had grown to love. These parents were our support group while our children were dying. It was to be together and hopefully to start to heal. Then something seemed to happen. We all came back. Maybe we still all need to be back. To occasionally meet up with someone who experienced the diagnosis, the journey of the DPG, and the subsequent death of our kids. Hmmmmmm. Now we want to fill a gap. By coming together and sharing our stories, we have found so many similarities and see empty spots that need to be filled. And we will set out to fill them. Hopefully, we can take some of that anger and make it into energy.

For example, I am angry that there is no support group specifically for DPGs. We will become that.

I am angry that the doctors tell me that symptoms are not tumor related. sorry, i have met too many parents whose kids suffered the same symptons. with us parents coming together, we may be able to compile that from a parental aspect.

we all agreed the most knowledge we attained during our 4 month to 18 month battles were from the other parents. NOT the doctor. We agreed at the end, we felt more knowledgable about these tumors than the doctors who were treating our kids.

we all agreed that the protocols they put our kids on are the same ones they have used for over 20 years and have been PROVEN not to work. so why the HELL keep doing the same thing. They do have new things on the horizon.

We have all lost our children to 'the most dreaded of all pediatric cancers for there is no cure. All treatment is pallative'. But we have hope. We want to be there for the parents whose lives will be unravelled upon diagnosis. Now we just need to get moving.

Thursday, August 2, 2007 1:12 PM CDT

Yesterday and today are the birthdays of two very dear friends of mine. Happy Birthday Eric and Chris. That means number 43 is around the corner for me.

The DPG conference begins on Sunday. I am really looking forward to see the families that I met last year and to meet a couple new families. I wish all of the conventioeers a safe and uneventful journey.

Tuesday, July 24, 2007 7:14 AM CDT

Cassie got all her hair cut off yesterday. She now sports an adorable bob. I have been trying for years to talk her into getting this but she always said she liked her hair long. that girl flitted around all yesterday evening amazed how light she felt. After dropping off her friends she climbed into the front seat and we went for a drive. She picked out the music and we jammed. Her head and short hair just moving. She and I had so much fun. It is hard to explain my emotion with her. The bond of a close mother and daughter? The pride in watching your child grow up? I am not really sure. I do know that it made me feel so very happy and content. In fact, it probably was one of the best feelings in my life. I bet all parents can relate to something like that.

School starts in less than a month. We are going to have to start looking for uniforms soon. Seventh grade. I just cannot believe it. Savannah would have been in 5th grade.

Tuesday, July 17, 2007 6:55 AM CDT

Back from vacation! It was wonderful to be with my parents and my sister and her family. My parents, Cassandra, and I went to Give Kids the World. Cassie and I had to drop off one and a half suitcases full of new toys we had collected. It was bittersweet to return. We went searching for stones placed in Savannah's honor. Two had her name on it. Four had other names on it. We found them, took some pictures, and got some ice cream. I looked for Savannah's star on the castle ceiling. I couldn't find it this time. Cassie and I got volunteer applications. We had always wanted to do that after we encountered this magical place. But alas, I saw a girl who by all appearances had a dpg. My stomach knotted up and seemed to want to escape through my mouth. I asked to leave right then. My heart seemed to break into a million pieces. I realized at that moment that I wasn't ready to work there for a whole week, yet. Maybe it would be best if I just give back to this place by other means.

My parents got us all tickets to one of the performing arts centers to watch Joseph and the Amazing Technicolor Dreamcoat. They cast was wonderful. Cassie enjoyed it as much as I did.

I asked to watch home movies of the children. Oh, it was bittersweet. It is hard to describe, the emotions. I think you have to have lived through the death of a child before you can comprehend. It filled my soul with a strong overpowering love watching the little ones. Time is so very precious. But concurrently having this explotion inside ripping apart your being with such sadness, such loss, such pain. I don't think you can have one withour the other. Both emotions with such intensity, it was utterly exhausting. I wouldn't have traded it for the world. I had a moment back in time with my baby, healthy to me and to the rest of the world. Those pipsqueak voices. The little girl dramatics. The innocence that comes with that age.

Decisions I have not made. One thing I learned from battling cancer...one day at a time. you can no longer plan or expect a future. It is a painful leasson we parents learned. And this thought is also extended to anyone who has lost a loved one before their time.

The DPG conference approaches. Jerry and I are going down a couple days early for some sight seeing. Well, he will probably hit the casinos and i will take in the strip. I am looking forward to seeing familiar faces and hopefully meeting more parents. I wish there was no need to even have this conference. But because a dpg is not in our control, I want to thank Carla and Toni again for creating such a godsend for us parents left behind tattered and struggling to make it through life without our children.

Friday, June 29, 2007 7:11 AM CDT

It has been way too long. So much has transpired and yet nothing for this site. Cass and I have been to hell and trying to find our way back. And that is all I am going to say on that.

Cassie is enjoying her summer at home alone. She is 12 now. She has been experimenting with fondant, gum paste, salad dressings, marinades, and pasta sauces. She creates a huge mess. Somehow that doesn't clean itself.

Last weekend I took a girlfriend of mine to Sparks for the annual summer Run. We had a blast. We missed the games and the contests. Stuck mostly to the campsite. It was at least 10 degrees cooler there and we had a wonderful breeze. It was estimates at 10K people the last night. Too many for us, so we retired to the tent. I saw several people I met in the past. It just amazed us that with all the alcohol consumed that we never saw any fights. My girlfriend felt so comfortable there. She was so amazed at the friendliness, the lack of drugs, the peace within the roar of thousands of bikes, the generousity, the freedom, etc. She can't wait to return. It was a wonderful mini vacation.

The 2nd Annual DPG conference is scheduled for August 5th-8th in Las Vegas. I booked our tickets yesterday. Anyone interested in attending, Carla sent me the info, and I will forward it to you. Carla has expanded it to include breakout sessions. This was the best thing for my sanity last year. To be able to finally look into the eyes of someone else that walked the same path, that has the same loss, that prayed for the same miracles that were never to happen, that asked the same questions, that watched their children die as they stood by helpless, that suffered similar family and marital distruction, etc. I need it again this year.

Cass and I are going to visit my parents and sister's family coming up real soon. We can't wait. Time away from here will be so good. Hopefully, it can help me make some difficult decisions. It will feel so good to have my mother wrap her arms around me.

Work is crazy. One of our engineers up and retired on Tuesday. We are down to a skeleton crew. It takes forever to replace anyone. And then when the jobs are posted, they have no one qualified. So hence, no one gets replaced. But, I crank along. Try not to waste any time here.

It is almost getting to hot in the evenings to sit on the front porch. I am going to have to break my routine of a cold beer and a few sodoku puzzles.

To everyone that has posted concern...thank you from the bottom of my heart.

Thursday, May 24, 2007 11:40 AM CDT

The guestbook is fixed now. Someone left a message with a virus attached to it. I just don't understand some people.

Cassie graduated from 6th grade yesterday. They had a wonderful mass, and the promotion ceremony for the kindergarteners and 6th graders was wonderful. Following, they had a reception, then went to the park for piza and to play all afternoon. I spent the whole day with them. It had been a long time. Since Jerry took over that aspect of transportation for Cassie. I have missed out on the friends and the closeness we all had.

Tomorrow they have the awards ceremony for the school. And then summer begins.

I look at the classes that would have/could have been Savannah's class. Those kids are all growing up. I just meekly smile. It is sad, but I see them growing and that makes me happy.

To all, have a safe Memorial Day weekend.

Tuesday, May 15, 2007 6:21 PM CDT

it's been a while. i don't know where the time went. Mother's Day was good. Cassie made me take a bath with bathsalts she made for me first thing in the morning. the two of us took a long walk and went shopping. then she helped me around the house. cassie made a cake from scratch the night before. even the icing. i mean ALL by herself. in the morning i noticed our neighbor who is like a mom to cassie. i told cassie, you know, Ronda and her friends have an annual Mother's Day dinner. What do you think about giving her the cake for Mother's Day. Then all the mothers can enjoy it. she said that would be a great idea, but she wanted a piece for herself. we walkes across the street with it and gave it to her. she cried. i cried. what a way to have your morning coffee. it was so sweet.

other than that, it was very meloncoly. thinking of mothers taken from us too soon. thinking of the children taken from the mothers. it is such an emptiness.

saturday cassie and i got a bunch of movies. we cuddled on the sofa and basically never left it. down time. we needed it. i needed to have her close. she needed to have me close.

cassie graduates from middle school next week. i just cannot believe she is twelve. i am watching her grow into a more responsible young lady every day. it amazes me. the things she has been through. sigh. so damaging. either you break and grow or forever stay there. i still pray she can overcome what has happened in her life.

back to removing caulk.

Saturday, April 28, 2007 3:22 PM CDT

Sunday April 29, 2007 8 pm

what beautiful heartfelt comments. thank you all so much. it always has hit me on the 29th because that is when i watched her die. she drew her last breath 10 minutes after midnight on the 30th.

cassie was across the street, jerry was out back with the dog, i was working on sodoku. three i just couldn't get. what was wrong with me? these are in the easy section. duh! it dawns on me.

time to celebrate life. i finally opened the bottle of wine, peach mango riesling. i have tried many times to open this bottle, and it was never right. tonight, is so right. cassie walks in while i am pouring a glass. 'what date is it?', she asks so suddenly with such intenseness. she joined me in the front when the first toasts were melded into the earth. the first, for Kathryn, the second for Savannah. she then added her Papa Allen. so sweet. she never questioned why i did what i did, just joined me. She even brought out a strawberry and dropped it into my glass.

no tears right now. just such deep sadness. an emptiness. and at the same time, a happiness for being the person chosen to be called mommy. a happiness for being the one there when she left this earth, a happiness that i was allowed seven years with an angel. goodnight sweet child. good night to all my angels.
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less than two days until the anniversary of my youngest child's journey to heaven. i haven't been in the dumps this time. jerry is so scared it will catch up out of the blue. i don't feel good today. maybe a bug. maybe exhaustion. but i don't know why i would be exhausted. i have been sleeping. lot's of very strange vivid dreams. i just seem to be going in slow motion today. could be depression, i guess. i am still functioning, only slow. i really don't want to function. rather just climb in bed but i won't. and i definitely don't want to leave the house. i had to earlier for a Kiwanis function. that just seemed to wipe me out.

savannah would have been in the hospital for the final time. i wanted her to die at home, but it just wasn't right. jerry and i were still there with Fr. Charlie. what a bond we made that night. death is as intimate as birth.

i want to remember the details, but i don't want to now. maybe i have more control over them.

tragedy changes us. it also brings out our true selves.

i want to thank everyone for their kind words and those that check and don't sign, their kind thoughts. celeste, you are such an important part of my life. Saige, my child, you have strength, grace, determination, and such sorrow. i want to wrap my arms around you and make it all go away. but life thought me that is a dream. but sometimes dreams give peace and comfort.

Wednesday, April 11, 2007 4:49 PM CDT

Fri April 13th
It is not very often that I change from an Evanescence song but I think this song is somewhat appropriate. It was a song I held close during losing two of the most important people in my life. My mourning was dual. The anger in the song I never felt as personal, just general anger due to the situation. My favorite part is the screaming 'nooooooooooo'. I still love hearing it. I sing it in my head.

I still hurt so deeply. We have had distractions, but there is an anger that life continues and you are stuck. I know this so well. It isn't fair to be left behind. But life does continue. I have to accept this. We have a new addition to the family. A Cavelier King Charles Spaniel. He has really perked Jerry and Cassie up. His name is Rocky. I think that belongs more with a mastiff. Something like 'Sterling' sounds better, but he is 3 1/2 and his name is his name. He is a fat little thing. Exercise is on the agenda. That is a good excuse for me to get some exercise myself. It has been a long time since I have had a dog. But honestly, he belongs to Jerry. Our cat is NOT happy. My dream cat has always been a red tabby. But I have forgone that because I didn't think this cat would cope. So now we have a dog. So our cat that once acted like a dog and came when you called her, now acts like a cat. Why am I even writing this? A grasp at something, I guess, that life continues no matter what you do. Tomorrow I may, I don't know if I can do it or not yet, but I MAY open a bottle of wine and salute a precious soul, not one but three. And it will also include those of the family that I have not had an introduction to.

Savannah would have been in hospice now. Either having a seizure probably due to a massive brain bleed or recouperating from one. She never fully recouperated, the tumor ate at her brain. But...three years ago in less than 17 days, she drew her last breath. A sound that will forever haunt me. BUT I was there. I will take that haunting, what a gift, what a priviledge. It has damaged me. But it has given me a deeper respect for life, time, and death. To be removed from this earth in your prime is so wrong. I have NOT gotten over my anger. The bell curve has been skewed with me in the picture. Just brief fragments pass my mind. I know I am preoccupied. And I do try not to feel guilty for it. I most likely feel guilt that I cannot help the other family so dear to me.

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I haven't been able to update. My heart hurt too much. And it bleeds not for my child but for another family. Never, as crazy as this sounds, do I ever remember feeling so much grief. I had from diagnosis day until today to absorb our loss. I had a split second with this. The whole world falling around me. Nothing I could do. Completely helpless again. I haven't been able to function. I forget everything. Cassie also seemed more affected with this news than with the passing of her sister. This is how much this family has become a part of our family.

Nothing seems important. Everything seems important. Sureal. Disconnected. I know it is shock. My body aching physically. Sleep irregular. Heart palpitations. Loss of short term memory. Dazed and confused. But these I welcome. I wish I could take more for them, for our Angels. It is because of our love for this family that we grieve so intensely.

I am so so so very sorry.

Wednesday, April 4, 2007 2:03 PM CDT

I am so late in posting. Evanescence was awesome. Amy has the most wonderfully haunting voice. She hit those high notes and held them. Audrey and I had a wonderful time. Her husband drove my truck so we girls could have a good time. What a great man.

Kiwanis annual Pancake Day was last Friday. Because it was Cassie’s spring break, all three of us worked all day. I got tons and tons of compliments on Cassie being such a good worker, very gracious, never complaining about what she was doing. I was wondering what child they were referring to. No, really, I am very proud of her. Now, I wish this behavior would bleed over at home a bit more. When we got home I started painting and she decides she wants to bake. Now this is normally one of those things that requires much patience on my end and lots of cleanup for me. I told her if she does it she is on her own. Well, she did. A chocolate cake from scratch. She even made a bit of icing from scratch. And then got creative with maraschino cherry juice. Well, she served it to some friends of ours that were over. It was a hit! Wonderful. It had that ‘from scratch’ flavor that you rarely taste anymore. A couple days prior to the cake making…was pie making. This was an ordeal for me because I was up a ladder and she had crust issues. But, her first ‘from scratch’ pie crust has excellent flavor. It didn’t last long at the house. I wonder what she will want to make tonight?

We are in the hospice anniversary weeks. I have seen Jerry very moody and easily irritated. Okay, me too, worse than him. It isn’t that you think about it all the time. your mind and your body just know. I can tear up at next to nothing. Oversensitive is probably the best way to describe this.

It has been warm enough to get back to sleeveless shirts. I find myself constantly with my hand over Savannah. I miss her. Would she have been such a help like Cassie? Or a little rebel. Would the girls still be each other’s best friend or would they constantly fight? Sigh.

Thursday, March 22, 2007 7:09 AM CDT

Evanescence is in just three days. Cassie and Jerry won't be joining me this time. Jerry has old ears. He can't hear the words inside the arena. Cassie will be with her dad. So I am taking one of my closest friends with me. Shoot, I would go by myself. We got great tickets. About where we sat last time.

Again, this will be so very bittersweet. From the little girl getting her chemo flush who fell in love with Amy's voice and beauty to her mama that picked up when she died. I cried yesterday on the way home listening to Evanescence. I haven't done that in a long time. Maybe it was time for a little tearing. The missing never stops. Sometimes I forget. Then I remember. Then I feel guilty. Sometimes I wonder if Savannah was ever really here. I know better than that. I would never have gotten a half sleeve tat of her if she wasn't, now would I?

Next week is spring break. I am taking a few days to be with my daughter. No great plans. Maybe paint.

The extension is coming along. It is such a slow process. We need to get brick ordered tomorrow. And I need to make a final decision on paint and buy it also. I never thought the game/bar room would be so difficult. We want it to look like a game room/bar area. Jerry already has biker stuff. But I won't let him park the real one in there. hahahahaha.

looks like he is going to sell the savannah hurley harley and ride the street bob until that is sold. another bittersweet decision. but like i told him, it is going to a good home. what more can you ask for?

Check out the pic of Cassie on her way to the Spring Ball. cassie had a blast. she was beautiful. so grown up but so much a little girl still. she really handled the 'barely there' makeup, the low heels, the hair covering her bare shoulders, touch of glitter very well. i thought she would balk and want to be too grown up.

she was embarrassed to dance with Jerry at first. I figured most girls were like that, but there just weren't enough little boys to go around. they both loosened up and had a great time. i have pictures to prove it.

this is the age of seperation into cliques, i noticed. it was the same when i was growing up. and it will be the same when Cassie's kids grow up. i just didn't remember the age. preteen. there were the 'popular' girls/boys who wouldn't give an adult or anyone the time of day, then the wanna bes that followed them. even though the girls/boys they were following around ignored them. the loners sit by themselves. then kids that don't care about the 'popular' girls/boys and make their own fun. cassie introduced me to a couple of them. these girls talked to me like i was one of them. one said something about being a nerd or a dork or something. i liked her already. i am proud to be a nerd. and you would never know to look at these beautiful young women. it was a wonderful event. i really am so blessed.

Friday, March 16, 2007 11:50 AM CDT

Welcome to Spring. Maybe. Afterall, this is Arkansas. But I have been wearing sandals this week. Yesterday I was able to wear a sleeveless shirt and I could see Savannah on my arm. Today is back to long sleeve, but that is okay.

Cassie's Spring Ball is tomorrow. We had a crisis a couple nights ago. Her gown is too long. I spent all yesterday evening fixing it. Tonight I will do the netting. I was so stressed out. I have never done anything like that before. My sewing machine isn't working. And I just had one shot. Jerry and I are chaperoning the dance. We are in charge of dance cards. At least this is alien to both Jerry and myself. I had heard about them but never saw one until Cassie came home from her winter ball with one. I am sure they will give us instructions. The other parents will probably be as clueless as us.

It is St. Pat's weekend in Rolla. Because of the Ball, I will miss it this year. Jerry told me that this is the first time that he has known me that I have missed being there. Actually, other than once, it was always a fluke that I was driving thru and I would just stay and hang out with the old GDI crowd. I am disappointed but I know my responsibility is to be here with Cassie for her event. I can't wait to watch Jerry dance with Cassie.

Wednesday, March 7, 2007 3:58 PM CST

March 12th
Please check out the touching poem written by a wonderful young woman who talent and compassion have touched my heart
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March 9th
Happy Birthday my Dearest Little Angel! Mommy misses you with such intensity. They say it gets easier. So far it is harder. Us mommies and daddies just hide it more to the outside world. Our hearts are broken, our dreams are shattered, but our love for you is what holds us together. I want to cover your face with kisses. I want to feel your breath against my cheek. I want your limbs to pin my to the bed once more. I want to smell your hair. I want to see you, to touch you...one more time...one more day.

We are going to have a birthday party for you today. I hope you have a big one set up in heaven with Rachel, Melody, Paulina, Leah, Jakey Bear, Leilani, Cameron, Sydney, Troy, Katherine, Noelle, Cheyenne, Liam, Celeste, Ray-Anne, Olivia, Sam, Isaac, Nolan, and all the other children we have met along our journey.

Cassie loves you and misses you. Jerry loves you and misses you. Mommy loves you and misses you. This is your day, honey. A happy day. Lord knows so many anniversaries are sad now. You would have been double digits. That is a big deal to Jerry.
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Ten years ago on Friday my youngest offspring was born. She no longer lives with her mother and sister. She lives in heaven and will remain in our hearts until our permanent addresses change.

I remember Cassie had just turned two one week to the day before. I was finally free to get out of the bed. The doctor removed the stitches to keep me from going into premature labor. I needed to nest. I did a little laundry, washed a couple dishes, and played with Cassie for the first time in three months. Cass and I were sitting at a little Fischer Price table working with stickers. Suddenly I felt a scraping in my lower abdomen. I never remembered reading about that in Lamaze class. About a minute later, a mild pain in my abdomen. Welcome to labor. I missed all this with Cassie. Cassie was 100ack labor and that pain was so intense I never felt the pain of the contractions. This I knew was going to be normal. I thought. I told my husband and no longer could concentrate on Cassie much to her dismay. I needed to get Cassie’s things together to go to the neighbors except the neighbors were not at home, only their son. We had time. Six minutes apart before the next contraction. Except then it was four minutes. Mark got the my stuff in the truck. The neighbors still were not home. The next contraction was in two minutes. This was going too fast.

I told Mark that Cassie was going to have to stay with the neighbor boy. We HAD to go NOW. He took her next door. 1 ½ minutes. It seemed forever that I stood standing at the truck. Probably only three minutes. The pain was lasting longer and the time inbetween was speeding up fast. Off we went. 30 seconds I had to breathe before the pain came that took my breath away. He dropped me at the front door of the hospital because I didn’t know if I could walk that far. He was walking to me, not running. Why wasn’t he running? The baby is coming, I thought. We walk in and go to the elevator. 20 seconds to breathe now. One minute apart. 40 seconds of excruciating pain. I get to the nurses station and don’t have the time or energy for anything. I tell them my name is Lisa Hurley and I am having my baby NOW. They walk me (why so slowly) to my room and tell me to change. I try but now I have 5 seconds to breathe before the minutes worth of pain starts. I start to cry, but hurt to much to make much sound. I ask for help. I lost my modesty right there. This is way too fast. I am so scared. This is not right.

The LPN helps me onto the table. The RN tells her to check me. She tries. ‘What’s wrong?’ ‘I can’t tell how far along she is.’ ‘Why’ ‘All I feel is the baby’s head’. Well, everything went into fast motion then. ‘Page the dr now!’ ‘Get the monitors on her’ ‘No time for that monitor’’Don’t push…for God’s sake don’t push’. I tell them I am not. it is happening without me. I swear I am not trying to push. I want to but I hold back. I told the nurse I needed something for the pain. She said sorry, you are going to have a baby and there is no time. the nurse holds Savannah inside me to keep from delivering her. Don’t really know why. Finally, the dr shows up. He grabs a scalpel and needle. He gives me an episiotomy while injecting the numbing agent. I start to scream. He tells the nurse to put the O2 on me. And she is here. The cord was wrapped around her neck, but she was fine.

All 5 lbs 15oz. Her hair is blond. Yeah! No red hair. She has a big head. She looks like her dad. She was beautiful. Perfect color. She attaches immediately to my breast. She is fairly quiet and wide awake. She is taking in everything around her. The amazed me. Welcome to the world Savannah Phoenix Hurley.

Friday, March 2, 2007 3:40 PM CST

Happy Birthday To You
Happy Birthday To You
Happy Birthday Dear Cassie
Happy Birthday To You

Shortly her overnight party begins. I have been put in charge of manicures and pedicures. And I was informed they need fancy drinks during my bit of enslavement such as strawberry slushes. I suppose that means she wants to be spoiled along with her friends. Cassie does like attention. This is a special day, a preteen. OMG. What am I in for?

The quizbowl regionals were yesterday. Talk about exciting and on the edge of your seat. I think I bit all my nails off. The Sacred Heart team was great. In fact, all the teams were great. These kids are brilliant. The games, in general, were so so close, within one or two questions. There were the top two teams from four regions represtented at this location. Sacred Heart took third. So not only is this the first time they advanced, they actually placed. I am so proud. The team worked as a team. It actually came down to the last question. We were a 1/2 question behind. Cass buzzed in, got it right, and took third by a 1/2 question. Must be how sports enthusiasts feel.

Every kid there was a winner. Every team there was a winner. I hope everyone understands that. To even just be a participant in a quizbowl is to be a winner.

Time to get out scrubs and polish.

Monday, February 26, 2007 7:39 AM CST

A friend of mine in Kiwanis lost her son over the weekend. He had been in a vehicular collision over a week ago. He suffered severe brain trauma as well as other bodily damage. They had been keeping him in an induced coma. His struggle is over. His parents donated his organs.

I have been crying, praying, thinking, and worrying about him and his parents for over a week . His parents were not allowed to touch or talk to their son. The drs feared the stimulation to his brain. This is what I was told. What I never thought of before, but it came to light with this…how lucky I was. I was able to hold my daughter as she died. I am not talking about a one moment they are there and the next gone. For almost a week, he lay dieing. His parents were kept from their most primal urge, to comfort their son. My cheeks stayed damp from the tears shed over the knowledge that they could not climb into bed with him, they couldn’t speak to him because the stimulation to his brain may make it worse. Even IF he was no longer there. Even IF he floated between this and the next world. It would have been beneficial to the parents. A comfort they needed in order to release him. Then I thought of what my struggle would be in that situation. How would I war with myself? I want, I need to hold my child. I want, I need to speak to my child. But in doing so, would I, could I risk a chance of life by doing so? The guilt and grief either way is traumatic.

I know what it is to have your life ripped away from under you. I know what it is to have dreams and goals destroyed. I know what it is to have a child stolen from this earth. What a waste. A brilliant child, a gift to the world. A young person who could have made a difference. A good child. And then they are gone. When life is comfortable. Forever I will fear comfort. That is a demon that found its way into my life. I will never be the same. Neither will this family. Forever damaged. Forever grieving. Forever empty. I know this all sounds so negative. It is but it isn’t. We will continue. We will live. We will function. We may function well. But the hidden fact remains. Our children have died.

Please send prayers of thoughts of comfort and peace. They have a long road ahead of them. The road of life. The road of life with the death of their only child.

I fear for them. I fear the turmoil between the two because we all grieve so differently. I fear their family, friends, and acquaintances. I fear the horrible things they will say under the guise of comforting words. I fear conversion tactics. I have heard such horror stories from other parents. Like…you can still have more children…at least you still have another child…because you failed Jesus Christ your child is dead, the devil took your child, it is God’s plan, he or she is in a better place, at least you have each other. All of these make my blood boil. But that is another writing.

Thursday, February 22, 2007 9:14 AM CST

Regional Quiz Bowl will be on the 1st of March.

The post I just put on, I removed, pending official word. When I am told, I will put it back up.

Monday, February 12, 2007 7:06 AM CST

Things are well here. I suppose that means no major breakdowns. I have been sick, bronchitus. Cassie is fighting something. Other than that, okay.

I have to brag. Quiz Bowl was supposed to be on the 1st of Feb. But we had snow and all the schools were cancelled for a couple days. She was so very disappointed even though we were all home. It was rescheduled for the 8th. Well, Sacred Heart made school history. They came in second place with Cassie as the team captain. In fact, the coach never rotated her out. The first game they lost. Nerves and jitters. Only two of the team members have ever been to a competition before. It was also Jerry's first time to watch. After the first game, the kids started a roll. From math to literature, from politics to grammer, from religion to science. It amazes me how smart and how much knowledge 4th-6th graders have.

Now they advance to regionals. That is as high as elementary quiz bowl goes. Don't know the when or where yet. But Cassie is ecstatic. She has no desire to play any sports, even though I have tried. So I am very happy that she has something that she is dedicated to.

I was thinking, how would of Savannah reacted? I remember how close she and Cassie were. She was protective of her. She would have been so proud of her big sister. I was trying to take my little pixie girl, make her age through time to today and use her personality to come up with a scenerio of her reaction. She would have insisted on a celebration dinner and party. Sigh. I guess parents do this their entire lives, wonder, imagine, miss.

I have tickets ordered for Evanescence. The end of March seems a long way off.

Jerry and I went to OK this weekend to visit his dad. We had dinner with his friends. They have been to him what my support groups and you here were and are to me. Ones who understand. Ones who 'get it'. Ones who could give him what the family could not. We had a good visit.

My cousin comes this weekend to visit. I am quite excited about that. Cassie will have to practice setting the table properly for multicourse meals for Cotillion. She even asked me if I had fish knives. Now, who the heck has fish knives, nowadays? Well okay, I do.

Jerry continues to make slow progress on the extension. He has almost all the sheetrock up now. The remainder will be done by the middle of the week. The we can get somone in to tape and mud.

Wednesday, January 24, 2007 8:39 PM CST

how are things? i guess okay. trudging on. calmness at times. fighting demons other times. peace? maybe someday.

i was told by a dear friend that the worst pain comes from your family. not that she meant it to me at all. but it made me think. God forbid. i have this lecture, for a bad lack of another saying, that this person is so tired of me blaming Savannah. That is so very painful.

Do I? Do i blame it on Savannah? NO. i have never said that. i have blamed it on grief. is there a difference? to me there is. it is a reaction to a circumstance. a very very bad circumstance. but never directed at my child. how can someone think that i am placing blame on my five, six, seven year old daughter? what kind of person do they think i am? what kind of parent are they insinuating that i am? maybe this is different now. but it is a haunt that resonates. it was said on more than one occasion, so i just can't blow it off because i can be hurt. when does the rawness stop? when? i pray for that. why can't i be the person i was before the walls were broke by my dearest friend? i could have coped so much better with my walls. i was so different then.

but you see, that falls into a timeline. a timeline set by who? by the drs who don't have a clue that write the books. by society. everything is so rushed now. is society calling me weak, because the hurt is so great? is something wrong with me because obviously, i can't deal and make excuses. well, to hell with everyone. i AM NORMAL. all of us DPG parents are normal. as riannon once wrote, very very paraphrased, we make it through to the next day battered bruised crawling on our finger nails. (that did not do her justice, I know) And if i am not mistaken, this was before savannah passed.

i vowed to my child. i vowed to God. i would not let the story end upon her death.

i am not consumed with my dead daughter. i am not. i am not in denial. BUT, i have residual effects upon my psyche. i am damaged. i function. i can function quite well. people who meet me do not know, and i don't share. i am so tired. but now i am physically tired. i am also sick. i slept just a couple hours last night. i think it is catching up with me.

i thank God every day for those in my life that DO care. I thank God for those who visit this site. I thank God for those that have never judged me. I thank God for a legacy my daughter has allowed me to continue on her behalf, a record, hopefully, a long term record of grief. just one mommies fight to continue. maybe good, sometimes bad. sometimes i still hate myself. sometimes i go places in my head that are horrific. I beg God to forgive me. And sometime i wonder why God has allowed me to remember the horrific tragedy that i had to watch my daughter endure.

i wonder how i was so happy when she was dying? how the hell can someone be so in love with life? i am not talking about jerry. i am talking about life. i was so retarded. it was a nightmare. a nightmare that i couldn't wake up from. i think back. i am appalled. i am stunned that i could feel that way. and i know, i know, i knew then, it is the minds way of coping with the unbelievable. it is a gift. a gift to offset to tragedy and the duty i needed to perform. but it is so laughable now. maybe that means i am getting better? maybe that means i am completing the stages of grief? do you read the sarcasm between the lines? am i staring to conform to societies set timelines? they say everyone has their own. we do! but really? what society says and what society does IS two very seperate things.

with that, i must tuck my little one into bed for the night and hit the bed myself, for tomorrow I visit my dr to treat a sinus infection and hopefully ward off broncittus.

Wednesday, January 10, 2007 5:46 PM CST

How come it just smacks you silly out of the blue? You are having a great day. A small trigger, such as seeing a little girl about 3 1/2, just releases the floodgates. From a wonderful day to the depths of pain. How come? Then the guilt that flows after the tears. How dare you have a great day forgetting your child that died. At least those days are fewer now. And to keep it a secret. Ah yes, grief becomes more and more secretive. I was thinking that a good paralel would be to that of a battered wife or husband. You can't talk about the abuse. It is shameful. It is shameful that it happens. It is shameful that you are in a relationship such as that. Could it really be your fault that this is happening to you? You are still there, so you must allow it. Just as we are still there, grieving. Therefore, we must allow it. Well, the above may all be true...BUT...sorry, it comes with it. You marry for life, you have children that are to outlive you. And it is not supposed to hurt this much.

You see, as time goes on, the vast majority of the world expects you to be 'over it'. Except there is no getting 'over it'. The best we can do is make a valiant effort to cope. Those close to you don't want to see you in pain. They are not the parent. Even though they also hurt, they can in no way understand the depth of a parents pain from slowly watching your child die with not a damn thing you can do about it. And the longer time passes, the less they can deal with our pain. We see little signs. Change the subject. Yada yada. We are quick to see this level of being uncomfortable. So we must begin to hide our sorrow. Just as a woman or man, hit by their spouse must hide the abuse. Maybe everyone gets one little episode. But if we feel they cannot understand. If we feel our pain somehow makes them uncomfortable, we shut down to them.

Eventually, you are alone. And yes, technically, it is by our choice. And that is okay. I am comfortable with that. But I am not one so alone, down in a pit, or miserable at the moment. I just had a mini breakdown. after a very good day. I saw a beautiful little girl 4 or less. My heart hurt. Savannah got to live through, in my eyes, the most beautiful time. What a gift I was given. But with that recognition is also the recognition that she is dead. And that is my pain.

Always now there are the exteremes. Watching Cassie grow up is so wonderful. I never could have imagined the pride of being a parent, the love you can feel for a child, the glory of a young vibrant compassionate young person. And then there is my dead child. The one that her life was stolen from her by a monster that grew in her head. The fullness of parenthood is matched by the loss of parenthood. The emotions have the same intensity. As they should. I believe in balance. But it still hurts like a mother!

The greater the love, the greater the pain. I 'cling to that. I have to. Without that thought, there is no hope.

And with that, I must dry my tears, move the table back into the dining room, and hide my grief because we are expecting company. So into the shadows the pain goes.

I will have a marvelous night because I choose to. And I wish everyone else a marlveous night.

Wednesday, December 27, 2006 1:07 PM CST

I hope everyone had a marvelous Christmas. Ours was very warm, very good. My parents left a day early because my dad was sick and my mother getting sick. My cousin and her dog left this morning. I wish them all safe travel.

I did cook. In fact, it seems like that was all I did. Roladin is so time consuming which is why I only make it once a year. We taught my cousin how to make them. Actually, this time I made them the way my mother does. They were wonderful. And of course we made plenty for leftovers.

I had my cousin darken my hair in an attempt to get back to my natural color. Well, I now have brown hair with red highlights. Jerry has been a doll saying all the right things even though he can't stand it. He said I was his raven haired beauty. Very good compliment if you ask me. I told Cassie this was an acceptable time to lie when she told me it looked like crap. 'but moooooooom'. i told her i was going goth. afterall it matches my black nail polish.

Santa visisted out house and got everyone gifts, even the dog and cat. Cassie was so excited that Santa did not exclude anyone. Christmas gets different as the kids get older. The kids are excited, not ecstatic. The presents fewer but more valuable.

I wonder how Savannah would have been at Christmas. What would she have wanted? What would she have been into? Would it have been what Cassie was in to a couple years ago or something completely different? What would she look like now? tall and slender? probably. taller than Cassie? most likely. long hair or a short bob. would she still be so in love with Jerry? Would she still want to protect her big sister? would I be an embarrassment to her the way I sometimes am to Cassie? Would she still tell me I was beautiful? would she still encourage me to put on makeup and fix up my hair to go out? Would her favorite band still be Evanescence? Would she totally be over My Little Pony or any other horses? What kind of books would she like to read, assuming she liked to read? What would her favorite subjects be in school? Would she be in quiz bowl with her sister, or blow that off and play basketball? Would she and her sister still have to sleep together or would they have wanted their own space? Would the girls still be best friends or would they really have nothing to do with eachother? Would they still share all the same friends? I guess you can wonder forever, and I promise you all that I will.

Remember that there are many parents and kids that are going through their first Christmas holiday without their child. Please say a prayer for them.

Monday, December 18, 2006 3:26 PM CST

Jerry's mother passed away last week. We have been in Oklahoma since Tuesday. I am very proud of my husband.

Cassie stayed at our neighbor's and then with her father. Tonight she comes home. I went with Jerry this morning to pick her up to go to school. I just wanted to see her. She looked so grown up. It dawned on me that she prefers her hair in a ponytail now. It used to be as difficult as pulling teeth to get her to take the hair out of her face. I always thought it was a hazard, the way she flung it around. And she is wearing it the same way I wear my mop, very convenient.

My parents and cousin are coming in for Christmas. I am getting excited. Time to cook. That is something that sometimes I wonder if I have forgotten. And I haven't baked in years. I think I will start with snacky things tonight. I wonder how much bossing Cassie is going to do in the kitchen. Because she watches Food Network, she is quite the know it all.

NOTE the new picture of Cassie in the Picture section. I just kept comparing the rose pedals to that one. Oh, how she is growing up.

Thursday, December 7, 2006 7:12 AM CST

i was thinking this morning or remembering may be more accurate. as Savannah started to deteriorate...it was so hard to watch. it was scary. it was uncomfortable. it was so very sad. this is where most people exit our lives. it is too hard on them. they don't know how to deal and it is easier to run away and not come back. they don't have to face death so they turn their back.

this is when, as the saying goes, the men are separated from the boys. and it doesn't matter if they were men or women. we saw many many boys. but we also saw a few men. thank God for those who had to take a deep breath and plunge in. they opened their hearts. they knew they would hurt but jumped in anyway. why? i know that it has nothing to do with seeking out additional pain to be in. but it is probably different for everyone.

people would ask how i was and what was going on, and I would tell. then they would change the subject. they were uncomfortable, and I was then hurt. i remember finding my support groups. finally finally someone that understands. all these people were living in or had lived in the same nightmare. they knew about the physical things that were happening to my daughter. they knew about the family strains that were more normal than not. they understood about my fears and about my pain. and they can also be a threat to those who love you.

we deal. we cope in the best way we know how. we continue. we survive. recouping, coming to terms, healing the pains of isolation, rebuilding your broken life, patching up the broken person you feel you have become is a long process after the fact. when Savannah was diagnosed, I knew my job. i knew i would have the rest of my life to deal with my loss, so i focused on her life, the short time she had left. I saw life and i became love. probably, other mommies can understand that. but with that, you get so wrapped up you don't have time for life outside your arena. and that is fine. i was busy. after her death, after any loved ones death, you are going to have to somehow reconnect. i still struggle with this and Savannah has been gone for over two yrs. like i said, i have the rest of my life, regardless of how long or how short it will be, to heal.

Friday, December 1, 2006 8:32 AM CST

Cassie's Papa Allen passed away yesterday afternoon. Please say a special prayer for his family. He fought very hard. And I know it was equally as hard for his family to stay by his side. But he is now free of discomfort, free of pain, free to be with his loved ones from the past, free to fly.

Tuesday, November 28, 2006 5:00 AM CST

That Sunday kept going down. I am in a better place now. Cassie and I ventured to Illinois to visit her grandfather and family. We ended up arriving on what everyone thought would be the eve of his death. These times are so difficult for the family. You have to be so careful not to be a burden but be of help. Cassie told me to change plans coming home, she is not leaving her Papa. He is such a fighter. We were so blessed to be a part of such an intimate time. It was hard beyond belief but the love is everywhere. It is in the tears, the hope, the anguish, the touch. I have said before with such excruciating pain comes the clarity of life and love. for that, I am so thankful. Cassie and I spent time at the cemetery both arriving and leaving. it is the first time she didn't complain about it. My ex mother in law was one of my closest friends. She and her husband welcomed me with open arms. And even all these yrs after her death and my divorce, he has still called me family. His arms are still open. God Bless that man. So much more I can write, but I feel it may be too personal to the family, and the last thing I want to do is add to their grief.

We spent Thanksgiving with my cousin, the one who was down here when Savannah was in hospice. It felt so good to be with my childhood family. Her childhood friend opened his home to us for dinner and company. In the wake of what was going on in Illinois, he was a godsend. We didn't have to worry about cooking. And I took that as a gift. You know, I never even felt guilty about intruding. It was warm and comforting. Oh, the things we really need to be thankful for. But that is what it is all about.

I was so looking forward to decorating. But our floor man is coming on Wed. I need to wait until after that for the tree. The Pergo in the kithchen is buckled from the water damage. And of course, our pattern has been discontinued. The whole doorway looks shifted because of it. I guess it is a place to start. the floors took the major brunt of it. I always loved my kitchen floor. weird what we attach too. i have just been so sick over all this. i want flooring in my extension, not the house! i wish it could all just go back the way it was. sigh!

please say some prayers for Cassie's grandfather and his family. thank you for always being here for me.

Sunday, November 19, 2006 8:03 AM CST

I am missing my little girl so bad this morning. it just hit me like a ton of bricks. i cried on my way to work. i still do not wipe away the tears that i shed for her. i EARNED them. i had to find that song by Evanescence, Holding My Last Breath. i needed to hear the lyrics. i put it back up here. i needed to imagine those words spoken to me by Savannah. i hurt so bad right now. does she miss me? i hope not. she is in heaven, but it doesn't stop my missing her. she was such a wonderful baby. such a wonderful toddler. such a wonderful little girl. i am mad that she is gone. i am mad that i was a good mother, that i never neglected her, that i fed her natural food, i breastfed her, i played with her, i held her, and NOTHING NOTHING mattered. she was still taken from me. damn it. it is not fair. the world was ripped off. she was ripped off. cassie was ripped off. and so was I.

cassie chewed me out about halloween. i used to decorate. i did nothing. i have done nothing since savannah was diagnosed. i just can't. cassie said we had the most decorated home inside and out. of course, i always loved halloween. i need to do better. for her, if not for me. i can't take away the magic from her. i am a big girl. i need to put aside my pain. she already mentioned decorating for Christmas. i will do that when we get bach from Illinios. the house is still tore up. nothing has been done on the repairs. can't seem to find anyone. i need to put it aside for the holidays. i can't take this one away from Cassie. that would be so wrong. i am tired of taking everyone down with me. it isn't fair to them. i do try, but it isn't good enough.

i used to have the house to myself on occasion. those days i would lose myself in grief. i would drown the house in music, not answer the phone, hold savannah in my arms, cried until i gagged on bile, and ultimately pass out from exhaustion. somehow, i was always wrong in doing this. i never have figured out why. cassie wasn't there. jerry wasn't there. i was alone in my grief. so then why when i mourned was i always told i was wrong. let me cry. let me hurt. let me remember. let me love my dead child. HAVEN'T I EARNED THAT RIGHT?

caringbridge was my only outlet other than a couple other parents. but we know that they hurt so much and we don't want to add to it so we are so careful not to bother them. because it isn't fair to them.

Wednesday, November 1, 2006 2:07 PM CST

Four years and two days ago my beautiful little daughter was handed a death sentence. Thank you to all for your rememberance and good wishes. it has been difficult. that i cannot and will not deny.

i so wanted to go out on Halloween as a family. but circumstances didn't allow for it. I took Cassie. We had a wonderful time. But it was so empy. then there were two Hurley girls. it breaks one's heart to think of it. the past Trick or Treating with the girls kept flashing. what they wore. what the temp was. where we went. how much candy they got. i wanted to share but there was no one to talk to. Cassie was gold last night. She had her flashlight and always looked before she crossed a street. always made sure i was in her eyesight. and so polite. One woman actually thanked Cassie for being such a polite young lady. made me proud. there were a lot of heathens out.

i saw the cutest costumes. little pink unicorns. little princesses. i just couldn't stop going back in time. i didn't cry. i just thought. i was sad but enjoying watching all the little kids. missing my own but watching Cassie enjoy one of her last Trick or Treat excursions. then that chapter of the book will change. meloncoly, i suppose.

the kids i knew when Savannah was alive and fighting have all passed. a whole new generation have been diagnosed, fought the battle, and passed away. and another generation has begun the battle which they also will lose. it really sucks.

Went to Sparks this weekend. Has a blast. got sunburned. and that is all i will say about that.

i am so glad that Savannah has touched so many people. made a connection with so many people. i introduced her to another this weekend. her pin now resides on a vetrans leather jacket. she so loved the soldiers. i was compelled to thank him. i wasn't going to bring her up until he mentioned he had donated all his hair to locks of love. well, what could i do? i shared her. it felt good and i did it without sadness. maybe that is progress. i guess, I am the only one that understands that. It is misconstued by others. how sad.

Saturday, October 14, 2006 11:58 AM CDT

i have been working in the computer room all day. i just watched the girls picture cd from june of 2003. it has their communion pictures on it from the studio. sigh! it was beautiful. and i din't even cry. i smiled. i was sad but happy that i got the opportunity to has the profession pictures taken of them.

the printer is still hosed, but i fixed the desk and redid the bookshelves. we ran out of cd storage, but i fixed us up some more.

i cannot believe that i am sick again. i doubt i ever really got over what i had a month ago. my head feels like it needs a drill through it. and i think i should have lost at least a couple pounds with as much as i have been blowing my nose.

jerry is getting the rest of the plywood up on the addition. he will enclose it, then install the windows and doors. perfect timing with autumn upon us.

i was putting away something and saw savannah's old mri copies. i couldn't help myself. sometimes i could kick myself.ha, My Immortal is playing as I type. Ironic. No wonder the drs initially thought she had only a couple months. in one picture it looks like someone lit up a real lightbulb in her brain. damn. my poor baby. i don't know how i could have stopped that monster.

Thursday, October 12, 2006 10:10 AM CDT

wow, time passes quickly.
tomorrow is my dad's birthday. a big Happy Birthday, Dad!

Jerry has extended the chimney up and the concrete sanded. he has been spending more time on wood cutting.

this cleaning up is sooooo time consuming. about half the plywood is up. the framer kept saying he was going to come back and do it. he showed up for a couple days, didn't get a whole lot done. jerry started doing the tougher stuff on it.

cassie got a net black lab puppy at her dad's house. their other lab disappeared. she is in heaven right now and i really don't think she wants to be at home. she wants the little puppy. i don't blame her. i just make her help me work in the house. screws up her lazy time. she started quiz bowl practice this week. it means an extra trip to Morrilton per week, but that is fine.

i moved Savannah into the bedroom with all the mess at the house. i figured she is safer there. i got to looking at her resting place on the mantel and thought, what if all the banging causes it to fall on the floor. i couldn't even think of what emotions that would cause me, so i moved her immediately. i feel much better now.

I think of all the parents i met in Vegas and miss them. I wish we could somehow all be closer.

Fall might actually now be here. it is 50 outside. but this is Arkansas. We have trick or treated when it was in the mid seventies and when it was in the twenties, so you just can't tell.

Sunday, October 1, 2006 6:25 PM CDT

another week has passed. the house is still a mess. BUT the new framer and the roofers are done. the old framer, we are guessing won't show back up. he still has the plywood to put up and to fix his screwups (well insurance will cover the damage part). but the damage was a whole lot worse than we ever thought. the bathroom tile is cracked, the pergo seams are rough in the kitchen, and a couple pieces of hardwood need to be replaced. the walls can be saved, but the door jams need to be planed. the ceiling in the livingroom and part of the bathroom have to go.

the ac keeps freezing up. don't know if that is from oveeruse and we have roasted it, or maybe because the furnace flue has been removed temporarily because of the framing for the roof.

the broken skylights have been replaced.

we spent all day cleaning. jerry cut up some chiminea wood in the back. i cleanned the mess in the attic. my back is stiff from bending and sweeping. but it needed to be done.

the neighbors had their pine trees cut down yesterday and today. then another neighbor had a couple cut down while they were there. now another set of neighbors are having theirs cut down next weekend. i tell ya, we have started a trend. goodbye PINES. even with those gone, there are plenty of trees. our backyards don't quite look like the woods anymore. and the front of our homes can and will be able to be seen.

i seem to be handling the stress okay. doing the guy thing. going to work. don't have to think about it. jerry, on the other hand, is a basket case. he has had to be here to babysit and has had to deal with the majority of it. he is a mess.

now that the extension is framed and under roof, it looks big. we still have three interior walls to put up. that will make it smaller.

thanks for checking on us. always missing sweet bundle butt.

last night outr neighboor stopped by to apologize about one of our remaining trees getting damaged by their removal. her three yr old daughter was with her. she just talked up a storm. she had that cute little pipsqueak voice, like Savannah. when we finally went inside, i told him that was the best 1/2 hr i spent in a long time. it reminded me of my healthy little girl. when the world was new. before little one know that bad things can happen. she wore a dress similar to one one the girls matching ones that they wore when Savannah was her age. i spent that 1/2 an hr without hurting and longing, just enjoyment. after it was over a deep sigh and a smile. the missing my baby began. but i also told myself that most parents miss their children when they were young.

back to cleaning upstairs.

Saturday, September 23, 2006 8:10 PM CDT

Sunday

back again. Cassie had her first Cotillion class today. She looked beautiful. if i can figure out how to download a picture from my digital camera, i will. she had a lot of fun. because she had a wardrobe malfunction, so to speak, we decides to straighten her hair. halfway through, the power goes out. she just panics. went to see if the neighbors was out, yup. so my neighbor says we have to load up and go to her daughter's house to finish. cassie gets her clothes on and we load up. pulling out of the driveway, Ronda says, the lights just came back on, so back up the driveway we came. she had a blast. learned how to sit properly, shake hands properly, have refreshments brought to you, learned the boxstep and the chacha.

as we leave, she says for me to hurry up. she needs to go home and change. i need to get her to her dad's, fast. they are going...get this...squirrel hunting. jerry just says, that is sooo wrong. cassie says, girls can do anything boys can do. i said, she has a point. from a formal etiquette class to hunting. that is cassie. definitely would not have been savannah.

tomorrow is a special day. please say a silent prayer for a dear friend of mine.

i will get back to the house business later.
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wow. didn't mean to be away for so long. and the guestbook entries? thank you all so much. i haven't even finished reading them, yet.

it has been pretty much hell here for the last couple weeks. the addition. oh my! Jerry worked so hard. so hard. the busted butt. things were going smooth. we actually decided to hire a framer to give jerry time to paint and cut wood. then he took a week off. the contractor insisted on taking part of the existing roof off first even when we asked why? and shouldn't the frame go up first? but his response was, i know what i am doing. i have been doing this for twenty years. 'it is all good'. well, the roof came off and the rains came. and now we have damage. he was going to repair it, of course. got his crews and were here all day and got 4 walls up. one of them one 4 ft wide. and one of the walls is so screwed up. more rain coming. and bad. we get another crew in to get a roof on. our contractor is pissed, but he isn't doing a damn thing because, 'it is all good'.
the other crew busted a#$ and got the rafters on. then they spent a half a day reworking the shoddy protection from the first go around. we did okay with the second round. just addition to the first.

but then i noticed the floors staring to buckle. the new hardwood floors. so i called my agent. they call me this morning, three minutes after the sirens have gone off. the floodgates opened. they were saying 70 mile an hour winds. don't think we got thoose here. the weather channel was talking about russellville arkansas, even. i couln't see the house across the street, it was coming down so hard. jerry's buddy came over and were getting the little leaks. there was so much water coming down outside. i am SO AMAZED at the expertise of my husband and all the people he got in to prepare for a catastrophe. the livingroom ceiling is still intact, wet but intact. the kitchen pergo was saved. the master bathroom only has one piece of sheetrock collapsed. more later

Tuesday, September 19, 2006 10:04 PM CDT

when was the last time someone brought up savannah's name? other than me.

???????????????????

Thursday, August 31, 2006 3:30 PM CDT

Wow! Nickelback was incredible. we stood the entire time singing our lungs out, even cassie. well, except jerry. they had a better stage presence than just a couple years ago when they were here with three doors down.

last yr for a school project cassie had to create a commercial. she wanted to use 'photograph'. but the rest of the team had other plans. anyway, we finally know what is on Joey's head. cassie said, man mom, they were messed up. ah, but a song everyone can relate to.

aside from their older stuff, 'Savin' me' was awesome. one of my favorite videos.

Hinder rocked the house. Jerry bought me their cd for Christmas and i didn't have a clue of who they were. i was immediately hooked. 'they'had incredible stage presence. i hope they continue and go far with their music. i so enjoyed their show.

Hoobastank and Chevelle were good also. a long long night for all of us, but so very good. The five of us had a wonderful wonderful time. Little Rock 'rocked' last night. i was glad we were a part of it.

jerry is displaying his artwork tonight at the depot. i am so excited for him. he sold a piece of it wed evening. wasn't even done, yet. and i think he has a commission, too.


************************************************************************************************************************off to see Nickelback, Hinder, Hoosastank, and Chevelle in concert tonight. i am so excited. i have been waiting for three months.

we have been fine. missin' my little one. but that doesn't stop. it becomes apparent when you watch your other daughter mature.

Cass was trying on formal dresses for upcoming cotillion. OMG. my little girl is growing up. she took my breath away. so elegant. such a beautiful young lady, even with her hair in a pony tail. and on course that makes me wonder...how tall would savannah be now. would she still have a petite frame. would she wear her hair long or short, pulled back or in her face. she would have wanted to try them on also.

it just hurts, but i cannot take anything away from Cassandra. i need to take in every moment.

the framer will start next week. getting there!

Tuesday, August 22, 2006 7:53 AM CDT

The dpg conference.

11 children were represented. They say 150-250 children are diagnosed annually. The average lifetime after diagnosis is 12 months. That means approximately 5% of children diagnosed in a yr were represented. To me that number is amazing.

Carla Brooks, Cameron’s mom, and Toni, Cameron’s aunt masterminded the event. So many of us followed Cameron and his 15 month journey. Carla and Toni are both so amazing. She found a niche, a space that was lacking, and filled it in her son’s and all our angel’s honor. We parents needed to meet. We cried together, we laughed together, we shared our frustrations together. Our stories are similar. But our anger over treatment seems to be universal.

This brings us to the major sponsor of the event. The Jeffrey Thomas Hayden foundation. Tim, Jeffrey’s dad, has also found a niche. Something that I had asked Children’s hospital long ago. He calls it tumor tracker. The medical community cannot do this, but a nonmedical institution can. I don’t know why I didn’t think of that a couple yrs ago. But I guess it was not to be my project. So go Tim go! I think all of our children that have web sites have now been linked. Once the data base is up and running, we will go in and document our children. Treatments, dates, side effects, symptoms. He will be able to graph any of these. The more children entered the better picture we will see.

All of us parents agreed that the most accurate and best information came from other parents, not the doctors or medical community.

Remember Savannah had presenting symptoms that I was told had nothing to do with her tumor. Remember she had severe side effects from the steroids that put her in the hospital that I was told from her onc it had nothing to do with her tumor. I really don’t hold it against them. They just don’t know. It wasn’t written on a medical document somewhere. Yet, in talking to these other parents, some of the other kids had the EXACT same side effects from steroids and brain tumor symptoms. So, it just goes to show you that the medical community has NOT studied these kids in-depth. But we will. And any parent of a child with this tumor can also.

Many of you know of Tom Zuba, an incredible man with an incredible story. From watching his daughter die 16 yrs ago, to watching his wife die 10 yrs ago, to watching his son die a 1 ½ yrs ago, sigh, your heart does go out. I did follow Rory while he was fighting his GBM. Tom had so much to say. It wasn’t that I learned volumes; it was that what I knew was affirmed. The discussions were full for compassion. Shoot, the whole room was filled with compassion. Every one of these parents and grandparents reached out to each other and shared their grief.

I will share more later. Peace to all.

Saturday, August 19, 2006 10:12 PM CDT

i still need to talk about the conference. i will. my brain is spinning. filled with ideas. when you have a focus and you decide something else may be more beneficial in other ways, you have to start weighing everything. that is what my brain is doing. tons of stuff, and they are plausible. gotta get with carla (cameron's mom). we will get the siblings there, too.

i got home the am of my birthday. thanks for the birthday wishes. 42. and proud to make it here. i am still alive, bit battered and bruised, but i have some work to do. from the tim e i walked into the office, it has been Valleyfest. that is the huge river valley fundraiser for the boys and girls club. i have been active with it in kiwanis, but this year i was in charge for centurytTel. i was cussing myself wed during lunch when i missed kiwanis because i was grocery shopping for the event. so much has happened this week. it is overwhelming me.

my birthday was incredible. jerry made it so, along with my neighboor and friends. a few hour break and back to valleyfest. jerry was the cook, or barbequer extraurdener (i am too lazy for spellcheck). AT has done it in the past and is passing over the reigns. it was HOT HOT HOT HOT, and this yankee fair complected redhead doesn't like this heat. our site at the event was in front of the stage, but NO shade during the day. nice to watch Marshall Tucker, though (they were great, 34 yrs strong). I cannot say enough about my spouse. what a man!

we had so many people at our tent. i heard more times than i can remember that these strangers had NEVER had that kind of hospitality before at these types of events. thank you CenturyTel for sponsoring us. One of the people that we fed and hung out (last night and today) with us, happened to own the carnival. I don't think Jerry ever met a stranger. And AT is exactly the same. I (we) got the most incredible compliments. the reason i am going to write about them is because they so deeply touched me. kudos to AT and Jerry!!!! I was told that NEVER NEVER in all the yrs they have been doing this, has anybody EVER fed them, yet alone welcomed them. and so many people i knew by name, even the judges. after 20 yrs in the same community i guess that is to be expected. i hope jerry wasn't overwhelmed over what he has been dumped into. he handled it like a champ.

the competition. jerry entered his ribs. AT helped him. awesome awesome awesome. he didn't win, but i am old enough to understand politics. i will confess as the first group of judges were in the tent, we backed off totally. they needed to judge without us hovering over them. i won't say what i overheard, but i will say i ws so so proud of my husband. hell, judges that weren't supposed to be judging ribs showed up for his ribs. personally, i think that speaks volumes.

he is passed out now, totally exhausted. i took a two hour nap this afternoon, so i am okay right now. while i slept, he and AT tore down everything, alone, packed it up, and headed out. i felt so bad. it was a company thing and no one was there to help them. the heat got me. all day at over 100 on fri. sat i must have looked BAD because even when some later judges showed, jerry (on his own), was putting ice on my back to help cool me. that is when i took cassie back to the house and promptly fell asleep in the AC on the sofa.

you know, i switched this year. i did company stuff for the community whereas before, I did Kiwanis. I missed and hurt and felt guilty because I couldn't help my club. wed, while i was grocery shopping for the company for valleyfest, jerry went to kiwanis. i missed the annual district conference because i was at the dpg conference. i received a pin, distinguished president for my term. i never thought i could have gotten that. so much is required. i am astonished. absolutely astonished. but that is all i need to say about that. it is kind of embarrassing.

need to wrap up for tonight. i want to curl with cassie on the sofa, since she is finally home with us. and i want to sleep sooooooo bad.

i wore my "proud parent of a child in heaven" button from the conference the entire time since i returned. a warmness. pride. i AM proud to be the mother of an angel. i have had specs of sleep, running on adrenaline, running on pride. my child's life is not over. Savannah has more to give and we will give for her. my body does need to rest and then i need to refocus. refocus on dpgs. jerry will back me. it is time i returned to the cruel monster. our babies may still die, but we can help the families. and eventually, stop this beast. we can start wil grief and then start backing up. an uptapped area where us parents can make a difference. a possible impact to the medical community. we will see. i have hope. it feels good. tears still feel good.

time for cassie before i crawl into bed.

Wednesday, August 16, 2006 0:50 AM CDT

As I pulled into the hotel the night before I headed into Las Vegas, the new Evanescence song came on the radio. I thought it was fitting. The next morning when I got into the car it played again. I am not sure if the cd has been released yet or not, but it was so comforting to hear Amy Lee's voice. A big thank also to Kathryn for sending me the link because I was so down last week.

Standing in line to board the plane in Phoenix, there was a little girl a bit ahead of me. She was being held be her daddy, I assume. Those little hands. She patted her daddy's back the way Savannah used to do. Her hair was blond, her eyes brown, but she had the same cute little body. Her facial shape was just about the same, too. I hear her little laugh. And my world shattered. I started to well up right there in line. I bit the inside of my lip. I am surprised I did not taste blood. I stopped the tears. Then a rush of sadness or something flowed over me and it started again. For 15 minutes I fought. I would wipe at tears as they would fall, so no one would see me. My little girl is now an angel and I was looking at one here. I started to pray for God to protect her and keep her safe since he chose not to do that for Savannah. I was begging and pleading. This little girl had an aura surrounding her or something that I was being drawn to. I wanted to touch her so bad. I was saddened when they went to the early boarding line. But so relieved because I could not stop this out of control feeling.

I boarded. Sat next to a couple, me on the aisle. I settled in as more passangers boarded. So many children. I kept overhearing others remark about it. I thought...they are children. At least they are not wheelchair bound and are not 50% larger because of steroids. I was quiet. The lady seat next to me apparently was kicked in the back by a child. She said something. I turned. Dirctly across the aisle from me was the little 34lb girl. I choked. How could I not have noticed her? How can I sit here? I would never have sat here if I had seen her. How could I have missed her? How? How? How? The tears started again. I stopped them fast. They started. I stopped them. I was losing contol fast.

Her brother was with her. Not much older. They started to bicker between them. I actually noticed my whole environment. I was surrounded by little children with this angel in arms reach. She wants the arm rest up. He wants it down. After a few times of this, he punches her...like any big sibling would do. I needed to talk to her. I needed it so bad, my body began to ache. I physically hurt. I told them both that they needed to share. And if they did, they can share the bag of cookies I got from my last flight. Their eyes lit up. Duh! I asked the older boy they were travelling with if that was all right. He was their cousin, and he said yes. They were gold. We made a dog house out of the box of goodies (junk) they gave us, and a swimming pool out of a cup I got from the stewardess for her little plastic dog she had in her pocket. I gave them my cookies. Hell, I gave them everything in my snack box including the box. She handed me her trash to get rid of. Just handed it to me like I had a magical trash bag. I loved it. My heart was elated and broken at the same time.

Later she said she had to go to the bathroom. Her poor cousin looked at me and said 'I don't know what to do'. I'll take her, and off we went. She kept looking behind her to make sure I was there. I handed her toilet paper. Lifted her up to wash her hands. Showed her the pump soap. She checked out the red and blue water. She pushed the button and watched the water slowly drain. I handed her a towel and she got to stick it in the shoot. Oh, I almost forgot. I also told her how to flush the camode. I told her watch the water as it was ferociously sucked away. She jumped back. As we left the WC, she turned to me and said, that was awesome!!!, with a huge smile on her face.

The lights were dimmed. She got my attention again (how could this angel not?). She said, I need a blankie. Off I go, in search. I come back with one for each of the kids. They had asked for pillows. I didn't initially see any until a few minutes later when the sterwardess walked by with one. I was determined to be a mother to these children, just for a minute. Their cousin was wonderful, just not a mommy. Off I go on a quest through this tube high in the sky to find pillows. I returned with a stash for them. I showed them how to put their seats back. I helped her position her pillow and she drifted off to sleep. Oh, the beautiful sight. The peaceful sleeping angel. How I used to love to watch Savannah sleep. I wanted to stare at her. It took everything inside me not to just watch her.

During this whole time, I had to turn away to cry. I am sure I was obvious, no matter how much I tried to stop it. My eyes kept getting bloodshot. I needed to hold this sleeping child in my arms. I wanted to feel her little frame against mine. The airplane 'blankie' wrapped around her. Her head gently resting on my arms. I wanted to feel her breathe. I wanted to feel her body heat. I needed this child. I wanted to protect her, from what? who knows. I am still crying. I haven't stopped since I first spotted her. My cheeks are swollen, my face stings, yet the tears still flow. And I don't know why.

It is utter sadness, a yearning which I have not experienced before at this depth. Yet, being close to her felt so good. It warmed my heart and eased some pain that I didn't know I had at the time. I was so scared that I was going to scare someone by my latching on. I was reserved to a point, yet craved more to the point of it being absurd. And I still cry.

The angel child was still at slumber when we approached the gate. I wanted to carry her through the concourse to her mother. But this was not my place. She was not my child. And I certainly didn't want to scare any mother, or person for that matter.I did ask if the young man needed any help because she was going to need to be carried. But he graciously declined. Once in the concourse, he did ask if I could hold her while he took her 'slightly' older bother to the restroom. Is elated the proper word? I felt kind of like I was melting. She held out her arms and crawled into mine. And I weep again right now just remembering how I felt. I was able to hold an angel in my arms. Just for a short moment, but a moment none the less. I stole a brief minute. I was so in love. And I miss my baby!!!!!!!!!!!!!!!!! I want Savannah back.

This little girl was exactly like Savannah was at that age, one and 1/2 yrs prior to diagnosis. I kept thanking God that even though he took her from me, he at least gave me this age to spend with her. Again and again I thanked God. It was the time when everything was perfect. The time before our lives changed with the divorce followed by diagnosis. I was thanking God and my child is gone, dead, passed on, deseased, not saved, taken, stolen, etc., etc. Yes, I am crazy. Except I am not. I know that I am a grieving mother. The tears were intense, but the pain was not. Let me rephrase that. The pain was less intense than before. I think only a grieving parent can comprehend that. I was and am still praying to keep that little girl from harm. It is a desperation. Maybe because she was sooooo sooooo much like my daughter that I feel this need. Who the hell knows? But I had to touch her.

I just thought of something. I have talked to several dpg parents. Several resounding themes occur. One is that people went -out of their way- to touch, talk to, or recognize these children. We all have other children as well, but our dpg kids were picked out well prior to diagnosis. Personally, I always were uncomfortable with the attention everywhere we went. I just did it. Very aware of my emotions. Very aware of my actions. Very aware of the intensity. I am begging God. I am begging the angels in heaven. Keep this innocent little girl from harm!

One more thing, before I forget. The stewardess had walked by, I don't even remember what was going on, but she took handed me something to hold for the kids. Ha. She thought they belonged to me. Whoa!

Huh! It is my birthday. This cold wet washcloth still feels good on my face, but sleep may be the best thing for me. Can I sleep, though?

Friday, August 11, 2006 11:52 AM CDT

Been a long time.

Life has just plain ole sucked.

After having my butt whooped by several my dear friends, I have decided to go to the dpg conference. I NEED to go for me. After all, it is what I have been looking for and waiting for. And they knew that. Unfortunately, I go solo. Hell of a thing, going to Las Vegas solo, but I will get over it.

We have been visited by dragonflies every evening for about a week. Thousands would descend to 20’ above our driveway. They would dance through the sky. I took several pictures. Digital cameras just don’t do well from a distance. I really had to zoom up close to snap a shot of one in the sky. They seemed to fly over the house, but when I went to the back…not a sign of them. I couldn’t figure out where they were going, where they were coming from, and what they were doing. I decided not to worry about it and enjoy the visit. They haven’t been back in two days.

The extension is progressing. The footings and slab are poured. Jerry has done an excellent job and I am so amazed at his ability. He is such a very hard worker. Next up is the blocks for the pier and beam structure. We have a roofer. Yeah!

The largest ‘yard sale’ in the world begins today. Yes, welcome to Arkansas. It goes along Hwy 64 through Russellville. Travel along hwy 64 (which runs parallel to the interstate) is dangerous now. I decided a couple yrs ago NOT to ever travel and work in the field on this day.

I hope I benefit from meeting these other families. The ones who, you know, understand. They understand what you feel, what you experienced, what you endured. The club. The club so many of us have talked about. The club we were not asked to join. The club we didn’t want to be a part of. The club that reached out and gave each other a bit of sanity during the times of crisis. And finally, the club meeting.

Safe travels to all others heading that way. Peace to the rest of you.

Wednesday, July 26, 2006 7:10 AM CDT

Yesterday evening I watched a multitude of dragonflies dance in the sky. What a wonderful tribute to Leilani, I thought. Yesterday was her angel date. I smiled and was at peace for the time I gazed.

I decided last night that I would not be attending the dpg conference in August. I am so sorry to the people I emailed saying I would attempt to go.

Monday, July 24, 2006 8:54 AM CDT

Today and tomorrow we have angel dates for the first two children I came to know and love. I met them through their caringbridge sites after they left this word for the next. Liam and Leilani. Their pictures are on my angel board at work right next to each other. Please say a prayer for their families. Most people seem to forget with time. But their pain and loss still continues.

The weekend started out h o r r i b l e. But ended fantastic. I had my weekend getaway with my ‘grade school’ girlfriends in Mo. We went rafting on the Huzzah and Meramec Rivers. Jerry and Cassie went a little further towards STL and went to Six Flags.

We had a long drive to the Ozark Outdoor Riverfront Resort. We get there and there is a long long line to get in. okay, I am cool with that. They want me to register my SUV and all the occupants. Why, I am being dropped off? Well, sorry, policy. Okay, again I am cool with that. So inside we go to wait again. ½ hr later the girl takes my cards and tries to register us all. Nooooooo, they are dropping me off. Well, I ask her, in order to keep from going through this again on Sunday; I would like to take care of it now. So she fills out the car tag for just Fri and just Sunday and tells us it will cost them $9 for a day pass to pick me up. WHAT? Now Jerry comes forward. The girl gets an older woman (supervisor) to come forward. I guess she saw me go from nice to B *&^%. Jerry says to them, I am dropping my wife off with her girlfriends; my daughter and I are leaving. We will be back Sunday to pick her up. I do not want to go through this hassle on Sunday. The older woman says sorry, you can’t have a car pass (that is what they told us we must do at the front gate), and it will cost $9 to enter on Sunday to pick me up. The young girl tore up the car tag 12 inches from my face. And it goes on. They don’t give me a key because they say Debbie has checked in. Off to the cabin we go. No one there. Obviously, no one had been there. I really think they did that at the front desk to upset me. The girl I think was convinced we were going to sneak Cassie and Jerry in the cabin without paying $15 a piece for them extra. Back up to the desk we go. The next girl is nice. Never even told her about the first girl. I made sure my anger didn’t show. She gives me the ‘spare’ key. Yeah, okay, right, whatever. I just want to drop my gear off because I am leaving. But in the middle of talking to me, another little worker girl who just got off work comes over and starts talking about a mutual friend of theirs. She just stops dealing with me and has a 30 second conversation. That is a long time if you are staring at her waiting. She never even apologized for the interruption. But at least this girl seems to be concerned about me not having access to the cabin, so the above I accept without getting really ticked off. Jerry and Cassie were supposed to be on the road 2 ½ hours earlier, and we are still stuck there. I write a note apologizing for my absence and we head out the door and get in the car. Jerry starts the engine and the girls arrive.

I am so mad; I can barely speak and am about in tears. Cassie starts ranting and raving to the girls. Jerry is beside himself. He is trying to get me to stay, so is Cassie, and so are the girls. Jerry heads back down to the office and Donna goes with him because the $9 to pick me up was the last straw for all of us…even though I kept getting more. Two people told us that. We explained and explained and explained once more that I was being dropped off. Anyway, they make it back. A different girl apologized. Yes, he and Cassie will have to be checked in on Sunday, but they will not be charged. (I am thinking…right!)

So, I stay, kidnapped actually and forced to stay. Cassie and Jerry have not eaten and still have to leave to find a hotel. It is almost 10pm. They are starving and were supposed to be gone by 7pm (I think I said that already). What a cluster %! And they get to attempt to ‘find’ a hotel. Remember STL had 500K people without power STILL. And many left town. My girlfriends were late because of it. Two still were without power and one finally got hers back on after 18 hours.

It goes on with this place. People EVERYWHERE. It was like an urban setting in the woods. This resort had everyone piled on top of each other. You couldn’t spit without hitting someone. Then they had all this vacant space. But the spots were assigned. Aggghhhh. Way too crowded. Then you have to pay for showers and they are nasty. The hell with that. I have bathed in the river since college. Good luck finding a commode with toilet paper in it. When I finally got in one, I had to clean the seat because it was very wet. Actually the whole floor was wet with tp all on it. It stunk. And this place seemed new. I suppose their attendants don’t do toilet duty. As I sat there with tp on the seat, I wondered how much of this was done by angry people treated the way we were. I was so grossed out. We were at the ‘family’ camp, so we couldn’t just squat and go during daylight hours because of all the kids running around.

It still goes on. And we heard other horror stories while on the river the next day. But the companionship was priceless. How many people are still so close with their grade school friends? I am so lucky.

I have never been on a float like this before, no canoe or raft float could compare. So back to the awesome girlfriends.

Cassie and Jerry had a blast. She told him that was the best day of her life. They did say the park had a ton more people than normal because of no power in STL. They finally got a hotel room, over one hour outside STL (the last one until Rolla). They both told me the water at the water park was brown by afternoon. There were so many people you couldn’t see the water until a mandatory 15 minute out of the water break. I told them, probably most of those people hadn’t had electricity since Thursday and they came there for a bath. They handled the crowds and filth remarkably.

Friday, July 21, 2006 7:32 AM CDT

I dreamed of Savannah last night.

Dreams are so odd, where you are, what you are doing, who is in it. I was at some kind of work function and had to leave to make roladin. Once I got to this kitchen destination, I couldn’t find a meat tenderizer, so my cousin (don’t know what she was doing at a work function) was going to give me a ride to my place of origin to get one on a scooter. Never been on one before. Somehow she vanished and I finally made it back to this back yard. Cassie was there. I asked where Savannah was. She said she woke up and wanted to go on a picnic and left. I looked over and a coworker was packing a car full of stuff to take her. I walked over to her. She was big, maybe at about 20 lbs added to her petit frame. Her hand was all bent in. She had that hard determined look on her face. She was holding one of those mini cans of Dr. Pepper. (now, as far as I know, she never had Dr. Pepper, never liked soda, and I don’t even like Dr. Pepper and never bought mini cans of any flavor soda) She lifted the can to her mouth. It spilled on her shirt. She was wearing a plain yellow shirt (don’t remember one from her wardrobe). I saw the wetness seep into the material. She tried again and it did the same thing. The wet spot growing larger. I remember thing we will need to get a new shirt on her before we went on a picnic. I gently touched her hand and helped her lift the can to her mouth. Again it spilled down the front of her shirt. I asked her if everything was alright. I heard her voice so clearly. ‘Can’t swallow’. The life drained out of me. The terror began. I felt it shoot down my spine. Shoot out my arms and down my legs. –control yourself Lisa- I kept telling myself. I told Savannah I was proud of her for trying a drink before real food. What the hell was this going to do for her picnic that she was determined to go on? She was so angry and focused because of the steroids. She still had her faculties. And she lost the ability to swallow. The steroids make her so hungry (and angry). What are we going to do? What what what? My baby. Please God, make it go away, please give it to me. Please please. The fear mounting, the surge again through my body.

I woke feeling the terror in my legs. I held back tears so hard, not wanting to disturb the rest of the house. I went outside while my coffee was brewing. I still feel horrible.

It was odd. Neither Jerry nor Cassie got up prior to me leaving.

Tuesday, July 11, 2006 2:33 PM CDT

I cleared out the guestbook, so it wouldn’t take so long to load on so many computers. All entries have been printed and put into a book.

Saturday we went to a wedding. It was very nice. We had a wonderful time. Jerry and I visited with some people I used to work with all evening.

Sunday seemed to be a different story for me. When I finally forced myself out of bed, I burned the heck out of my finger making breakfast. Because of the nasty burn, Jerry wouldn’t let me rake dirt outside. So I cleaned out closets, cabinets, and toys. I ran across a packet of pictures. I just knew they contained Savannah. I just knew. I set them down and just kept working. I knew if I opened it, I would fade so fast. Finally after a couple hours I did. Sigh. It was a roll from Savannah’s first day of kindergarten. I about choked. Prediagnosis, probably symptomatic if I only knew there may be something to look for. I was studying her eyes. Did they show any signs of a monster tumor in-between them deep in her brainstem? Was her attention span decreased from the tumor or was she just excited about the first day of school? She seemed to have difficulty getting her picture taken and she had always been so photogenic. Her life as a normal child was about to end. And the damned part was she was starting ‘kindergarten’. Her life really was about over. Her death was about to commence. I held the couple pictures so tight in my hand, not wanting to continue because I knew what I was going to see…progression. I needed to grasp on to the ‘good’ past before moving on.

Well, I continued. After all, her prognosis, cancer, and subsequent death are all a part of her life. Sigh. I knew before I got out of bed, that the day wouldn’t be very good. The next one was right when we returned home after the death sentence. Her eyes so droopy. Her cheeks bright red. She was unable to remain in a sitting position. She couldn’t get comfortable and began to kick and was getting angry. The pictures showed it all. My child was already a steroid monster. She was still skinny. The next picture was of a month later, already fat from the medicine. Looking so miserable. Feeling so miserable. Her eyes looked dead. Looked like the little five year old gave up on life. Have you ever seen this? If you haven’t, I pray you never have to. And for those poor parents that have, I truly am sorry that you also had to endure this horrific pain of watching your child die in front of you. Welcome to the fun fun world of steroids. I was allowing my daughter to be killed by a few little pills everyday. Trusting that the drs had my child’s best interest at heart. (I am sure they did, but looking back it sometimes sure doesn't seem like it)

I was at the end of the roll and just wanted to die. Oh, if I had to do it over again…if I had the chance. I would have refused all treatment. Allowed nature to take its course. I doubt she would have made it one month. She wouldn’t have had to suffer for so long. Sigh. Well, that sounds good, but it probably isn’t true. I refuse to allow myself to believe I could have or should have done anything different than I did. But those pictures. Could I not see her? COULD I NOT SEE HER? WHAT SHE WAS? WHAT SHE WAS BECOMING? My baby, my princess, my little girl that wanted to be a horse when she grew up, my offspring that was going to karate chop everybody that made fun of her big sister.

My heart felt funny after that, kinda fluttery. I needed to get out of my pity party. I went back to cleaning. I was never the same that day. Quiet. But there was nothing to say.

Monday, July 3, 2006 10:21 AM CDT

Wed July 5th

Was looking at the picture and thought i would mention that this is right where we said our vows. In front of the picture of Cassie and Savannah that my husband had painted for me when we were just friends. Most importantly, right behind my head, is Savannah. Her resting place. I had to pack her in tight to get all of her to fit. Kinda weird to mention that. I was surprised there were so many ashes. In front of her urn is her rose, hidden by my head. Cassie picked out a white one for herself and I got a red for Savannah. On another side note, Cassie's rose was beautiful for a week. Savannah's red rose wilted and didn't last 48 hours.

Huh, over to the far right is the unicorn drawing from 3-22-04 which became the tatoo over my heart. Next to it is the plaster cast of Savannah's hand in mine. And to the far left is Cassie's corner with her plaque, bottle of grape juice, and trophies. Father Charlie, Jerry, and myself together again like the night Savannah died. And the light in my life, Cassandra.

And we have our building permit. So we can finally begin the addition.

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I wrote that I was going down last week. Called and talked to Sydney’s mom, Carol. Thanks Girl! We were discussing success stories on our support groups. Parents asking to hear stories of hope. They start flowing in. This is a cyclical pattern. What gets us is that these success kids don’t quite have what our kids have. Need to hear some survivor stories of kids with typical diffused intrinsic ‘pontine’ gliomas. Normally an AA3 or fibrillitory A2. But frankly, we don’t know this because you can’t biopsy the tumor (in some cases you can but that is rare). It almost seems wrong to me. These parents are so new to the game, they may get confused comparing JPAs or tumors not in the pons or nontypical to what their child truly has. It makes us want to scream.

I guess I had taken a different approach. Not that mine is better at all. I knew my child was going to die from the moment the doctor told us. Actually, I think I knew when her little body slid back into the MRI machine. I still looked and looked for success stories. They are out there for slightly different diagnosis or tumor locations, but not dpgs. Sigh. How much did I concentrate on the life Savannah had, fighting the doctors and her father over treatment that was prematurely killing her. Making memories. Spent all my time with the girls when they were with me. I had to cram it all in. Why am I writing this? I have written it all in the past, but as memories come back more than once, I guess this does, too. I just pray those parents don’t lose sight of the little time they actually have. They have to cram 60 yrs into one. And looking at what I wrote seems to say there is no hope. This is so wrong. There is always hope. What is there to lose? If you concentrate on your child and they are the first miracle to be cured…what have you lost? You have lived ‘pure love’.

The black cloud that has hung over me seems to have finally started to thin out a bit. I don’t get so angry all the time. I am not quite as passive/ aggressive as I got for a brief time. I am not completely over sensitive (you wouldn’t think so by what I just wrote). It is a slow process to come out of this phase of grief. But I know going through it is healthy. I feel sorry for Cassie and Jerry. I have lived on my last nerve for many many months now. Ha, maybe I have developed two nerves now, so it takes a little longer for me to combust or shut down.

Sat night I had another bout of no sleep. Doesn’t happen very often, but it is still irritating. Did get to watch some X files. Yesterday we vegged in front of the tv. Maybe the relaxing and doing nothing has eased my spirits. Hell, we know that can switch in an instant.

We received some of the artwork we bought on the cruise. Beautiful! Need to tell more about vacation. We didn’t do much. Hung out on the Lido deck in the shade, would visit all the secluded bars. They are nice when no one is there, just to sit. Jerry even serenaded me while he hit keys at the piano in the piano bar. He can't play and can't sing. That is what made it one of the highlights of my life. I laughed like I hadn't laughed in several years. My cheeks hurt. We had a gazillion pictures taken, to decide on only one. We went on a time share kinda deal. Got a free bottle of tequila and coffee liquor. No telling how many yrs that will be in the liquor cabinet. Met so many wonderful people. In fact, most people who come here know I don’t like to eat at night. Well, we got 8:30pm seating. Yuck! But I went for Jerry. Then we went for our table companions. Just couldn’t miss our daily visits. We did miss the last evening. Exhaustion hit. For some reason both of us had been staying up until about 3am a couple nights in a row. Why? Who knows? It is amazing how many teenagers are walking around the ship then. We also met some very cool couples. It has always amazed me how smokers connect to each other. We spent a lot of time with a couple in their late 70s-early 80s. In fact, I think we will try to visit them next time we are in Tampa.

I found out about a Shared DPG Conference in Las Vegas during August. It looks as if Cheyenne’s father Roy and Rory’s father Tom will be speaking. Many of you are familiar with them. Jerry and I are going to try to attend.

Happy 230th America.

Friday, June 30, 2006 3:41 PM CDT

I hope everyone has a very safe Independence Day and weekend.

This morning I had that complete empty feeling again. It sucks the air out of you. Come to think of it, that happened yesterday afternoon as well. Except, yesterday i cried. Today I didn't. I so desperately want to hold my little girl. I miss her. As time goes on, she seems more distant, and that scares me. I think it is because i am watching Cassie grow. There should be my other daughter growing beside her. She would have been taller then her big sister by now. But she is just a memory now. It seems so unjust and unfair to these kids and to the world.

Cassie is with her father this week and next. This may be what is bringing it on. Or maybe, it is just time.

I am better this afternoon. It seems there will be an upcoming conference in Las Vegas in August. We will see what transpires on that.

For all who remember, the 4th of July was Savannah's favorite holiday. She was such the patriot...for God and Country. or is it? that's what i mean. i almost forgot, or am i remembering wrong, things get fuzzy. i know it is. but it just seems so distant now.

anyway. jerry and i are going to be working on the house.

God Bless America on her birthday and every day !

Tuesday, June 27, 2006 7:43 AM CDT

We are home. We had a wonderful time. Many stories to share. I will start will my poor spouse. For twenty years he has been told he looks like a certain actor. Boy was it prevelant last week. We would walk through the ship and i would notice a woman just staring, her eyes wouldn't leave him. I get such a kick out of it. Even at the bar, he said some little girl (okay not too little if she was at the bar) approached him and said her mom had been talking about him because he looks just like her favorite actor. This never ended. Every day, on ship or off, this happened. I told him I should call him Sam, and see what the people do around us. I thought that might be funny, but I never did.

In Cozemel we had an issue. Apparently, some young adults under 21 found themselves in trouble with the Mexican police. Not a good bunch to be in trouble with if you ask me. They had come on board and escorted them off. We heard that because they were under 21 the ship could not leave them in a foreign port of call. so we waited and waited and waited. Finally, 3 hrs 40 minutes later they are back on and off we go. The ship kicked it into high gear. 'Hold on to your drinks'. That ship was rocking and rolling all night long to make up for lost time. There is no telling how much the cruise line was out waiting on those kids. Even at 6am we were flying.

We had beautiful weather the whole time.

Our first night home I actually dreamed of Savannah. My first good one. She was sleeping. No cancer was in the dream. No steroids. No illness. She was just a sleeping princess. I needed to move her to the bed. The problem was that I kept thinking she was Cassie. It took me a couple minutes in my dream to realize it was Savannah. Is that telling me that time is passing? Sigh. It was good. I felt no sadness for the first time. But also with that comes the opposite. You don't feel the incredible outpouring of love. The holding on desperately, taking in every detail of your child, their smell, the softness of their skin. I just picked up my daughter like any mother would. Again it is a balance created by this beast. A horrible disease matched by your eyes opening for the first time to every detail of your baby. Kinda like right when they are born. Enough for now.

Thursday, June 15, 2006 8:19 AM CDT

all the trees are gone. well, 36 are gone. 26 still remain. the yard no longer exists. but we will tend to that when we return from our honeymoon.

Thursday, June 8, 2006 7:22 AM CDT

Friday June 9th


Only 10 trees remain to come down. Most of these are between 40-60’ and in the front by the house. The stump grinder is coming this afternoon and grind the 25 stumps already there. When all is said and done…NO MORE PINES. After 13 yrs of not wanting to disturb the balance of blah blah blah with the trees…nature…and all…they were there first, kinda crap, I am taking control of my property and they are going. Still leaves something like 30 hardwoods, so I don’t think I am going overboard. The existing hardwoods will now be able to grow and canopy. We will be able to grow grass. And maybe get plants other than azaelias to prosper.

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Happy Anniversary a day late to a wonderful couple who have touched my heart in many different ways.

Cassie is with her dad this week. I miss her so very much. You would think i should go do something special. But no. Well, guess that isn't quite true. Got to shoot pool yesterday for a bit. I swear this is a small town. Met someone who I will be working with probably when I get done with the budget formalities and get back to engineering.

The trees are finally starting to come down at the house. And I have to redo my addition plans. New ordinances passed after I bought the house. So I have to follow that. I will get to it. Just lost the gusto for the moment.

I miss following all the bt kids. I used to call them mine. It hurt so very much, but it made what we went through real. It filled a void left when Savannah passed away. So many people told me to stop. That it wasn't good for me, the way it could take me down. Guess I just made them uncomfortable. Anyway, I slowed down then stopped. Now I am developing health issues. Can we say 'stress'? In a way I just gave up. Don't want to make others uncomfortable so I did what I do best and shut down.

Vacation is in a bit over a week.

Wednesday, May 31, 2006 3:56 PM CDT

Time for an update now.

I mentioned we had a party planned for last Saturday. What I didn’t mention to anyone was the true reason for the party. It ended up much better than I could have ever expected. I really do hope it wasn’t corny. We didn’t want a big tado. Fr. Charlie drove in after mass.

Jerry called everyone inside for a moment. Blamed it on one of the guests, I think. Fr. Charlie then began the ceremony. Jerry had to stop him. He proposed to me in front of a house full of people. I had the shortest engagement. The ceremony was beautiful. We stood at the base of the portrait of my girls and in front of Savannah. I couldn’t think of a better place. Both my girls were physically there. The rings were blessed. And the marriage blessed. It was Saturday’s events that were of importance to us, not the courthouse the day before.

I will continue later.

Wednesday, May 31, 2006 10:56 AM CDT

I am trying to get a picture loaded here from Saturday night.

Wednesday, May 24, 2006 3:54 PM CDT

Today was Cassandra’s last day of school. They had there awards ceremony this morning. It was real bittersweet. They start with the little ones and work there way up to sixth grade. I am sitting with Cassie and her class. They are announcing names in the 2nd grade class. I remembered them. That was the first thing we worked on in reading in kindergarten. This was the class that Savannah would have been in (her second time around). That was fine. Until they got to the third grade class. That was the class Savannah SHOULD HAVE BEEN IN. That was the class that welcomed her back after a four month absence. That was the kindergarten class that she graduated with. And she was not there. I put my arm around Cassie. I guess just stealing comfort from her little unsuspecting frame. What kind of awards would my youngest have been getting? Sigh!

Now this is really the coolest part of this post.

Cassie. Man, I have to brag big time. First Honors, 1st Place Essay Contest, Quiz Bowl, and a Reading Medallion. Summer is starting for her. She is so excited. Seems to be a busy one for her. Her dad has her signed up for a couple camps. There will be weekly library day (she’s not looking forward to that one), swimming lessons, and visits to the animal shelter.

Still seems to be so much to do to prepare for the party on Saturday. I do hope it will be a grand event.

Well, Jerry cut his hair off. He looks good. Of course, he was clean cut when we met. I told him he will keep getting told he looks like Sam Elliot. Well, except a girl here at work goggled Sam's pic to see because she's a youngin'. And there is Sam. Hair cut almost the same as Jerry's. She just started laughing.

Thursday, May 18, 2006 7:36 PM CDT

Today is a good day. Jerry and I opened up a very special bottle of wine and toasted to a dear friend on his birthday.

Mom and dad stopped by Monday evening on their way home. Tuesday mom got her first ever manicure, pedicure, and massage. She loved it. I loved giving her something she had never allowed herself to have before. We had a wonderful 'girl' day. Dad and Jerry just hung out and did whatever guys normally do. Cassie was so happy that she got to switch nights going to her dad's so she could be with her grandma and grandpa.

So this evening she is with her father. School is wrapping up. Tomorrow is field day. Jerry volunteered to go help out with the kids. And we all look at him like he is totally 'nuts'. But Cassie is beside herself.

Hopefully next week they will resume on the tree cutting. I was wanting them down, the stumps ground, and then us clean the yard prior to memorial day weekend because we are planning a party. I'm getting a bit tired of having a white trash yard. My luck, April showers start a month late, the day they start removing all the trees.

Think we got Cassie's summer schedule figured out today. It seems kids always have a busy schedule. Still would like to fit in a couple getaways in there.

Company's coming...gotta run.

Monday, May 15, 2006 7:10 AM CDT

Mother's Day has come and gone. I hope it was a great day for all the moms out there. It was a good day. The three of us headed to OK to see Jerry's parents for the weekend. That was probably the best Mother's Day gift Jerry could have given his mom.

Sunday morning I took everyone out for breakfast. A single gentleman at the table behind me asked me if I was the girl's (cassie) mom. I thought, oh no, she is kicking the booth or something. yes, i said. he grabbed my hand and shoved something in it. He held my hand tight for a second so I couldn't see. He was shaking. He said, this is for you. i can't be with my mom today. i said thank you. he released me. inside my hand was a $20 bill. I thought about returning it. He looked like he needed to keep it for himself. The old Lisa would have. But I would have ruined it for him. I thought, you don't know his circumstances. She could have died, work could have kept him away, he could have been ostricized from the family. you just don't know. and it was very important to him.

Jerry and I escaped and went to the BBQ and Blues festival in Bigsby. Cassie wanted to stay with Jerry's parents. I told Jerry it was like we were going on a date. The music was grand. The weather perfect.

Tonight my parents arrive for an overnight on their way home. We get out Mother's day a day or two late, but well worth it since we can be together.

There are many moms out there who lost their offspring. Moather's Day is another one of those painful days that we put a happy face on for. Even if we really are happy part of us is empty and sad. Nature of the beast, I suppose.

Thursday, May 4, 2006 7:20 AM CDT

I dreamed about Savannah last night. Only a couple times has this happened. I envied those who were visited in sleep by their children. It always escaped me. But I also was at peace with not dreaming.

The dream was good because I was able to have my daughter back for a brief moment. But the dream was horrific. I don't know if it was worth having.

Savannah was back with me. I knew she was ending her honeymoon phase even though i knew we had already experienced this. her right eye shift off to the far right. Her left eye started spasms. But she was just talking to me like normal with no talk of not being able to see. It was coming on sooooo quick. Time was so short. She wanted to go for a walk. My little girl was able to hold my hand. I wish I could feel her hand in mine. but then she stumbled. The surge of terror went through my body. The ataxia has begun. Then she seemed to fall around backwards. This damn monster was growing so fast. I called for Jerry to hold her other hand. Her walking became so bad that i carried her. she wanted to keep going, to keep seeing the world around her. her last chance, i thought. then jerry took her. i was alone and terrified. he came in and said it is growing so fast it will only be a couple days or hours. her breathing has started to get gurgly. i can't do it again. i can't do it again. that was all that i could say. but i kept thinking that i have to be there for my daughter. how could i run, but i didn't know that i could. oh, the guilt i felt. she was dying and i was being so selfish. i wanted to hold her and never let her go, but i couldn't go through her death one more time.

then i woke up. the jury is still out on if this was a good dream or a nightmare. anything to have my baby for a moment. but at that price. i feel aweful. the dream drained me.

everything else is picking up and starting to speed up. i have been complaining that i had so much to do and couldn't get anything started yet alone completed. now the balls have begun to roll. and they will go much faster. now that makes me nervous. time for a deep breath and take one day at a time.

Wednesday, May 3, 2006 7:36 AM CDT

I am not going to say that the weekend was easy. Jerry's best friend called and said he was coming to see us Sunday and Monday. Made me a bit uncomfortable due to timing, but he had no idea. Maybe it was a good thing and created more of a distraction. Nothing was said on Saturday, the day I was dreading until i casually wrote it on a magnetic board Saturday evening. Law and Order SVU was on. My favorite show. All three of us curled up on the sofa. Cassie said that was the best thing that could have happened to me. I fell asleep during CI. I wanted to be asleep. I didn't want to be awake come midnight. Jerry stayed up and wrote. I guess we all handle things differently. And different years we even do different things.

I miss Savannah so much. Her little pipsqueak voice. Her touch on my face. her smell as she slept next to me.

It has been two years, baby. It seems like yesterday, yet it seems like a lifetime ago. It seems unimaginable, yet so realistic. I still get very lost sometimes. But I keep telling myself that i have to go on because you would want me to. You don't want your mommy to be depressed, you don't want her to cry, you don't want her to feel all alone, you don't want her to be angry. You aren't here anymore to wipe the tears off my face when you caught me crying over the death of a child. I miss you.

Thursday, April 27, 2006 6:06 PM CDT

Two yrs ago Savannah would have been in the hospital. The final hemmorage, bleed, stroke, whatEVER! The movie kept playing in my head this morning. She opened her eyes. Jerry called me in. She tried to communicate, she tried so hard. Her eyes. Her eyes will haunt me for the rest of my life. She was trying, but her brain was bleeding. Jerry was laying down holding her in his arms. She began to seize. I called hospice and got her lorazipan. He got up and put on her favorite movie, Spirit of Cimmeron. The seizures wouldn't stop. Elaine from hospice arrived. Savannah was at the max dose for an adult on lorazapan and morphine. nothing was stopping them. Elaine finally said because she is in hospice doesn't mean she can't receive medical treatment. Is cruel to let her die like this. Her heart rate was over 200. She was stiff as a board. My dreams of wanting her to die at home were crushed, but what was happening was horrible. There was nothing peaceful. Those eyes, remember!

I called the hospital, and let them know we would be there in ten minutes and what was going on. The male nurse met us at the door. Everyone was all over my little girl. The male nurse remembered us from Children's hospital. I wrote about him before. They gave her something else, dilantin? don't remember anymore. Another dose. finally har heart rate began to drop. 190. 180. that is way up in stroke range. they admitted her to get the seizures under control.

Jerry, savannah, and i got a room at the 'inn'.

she never woke up.

THAT is what kept replaying in my head. I thank God for Elaine. She saved Savannah from the most horrible slow painful death. By telling us that she can go to the hospital without breaking hospice practice, she allowed my daughter to die from her tumor, not from seizures.

I cried many tears today. Good thing I was on the road. I stroked my tatoo, kissed her little lips, and allowed the tears to roll down my face. I feel alright now, i guess. my head hurts.

i think i needed to get it out. i can't remember how much of the story i wrote about before. right now i really don't care about repeating myself.

I was thinking about Riannon and Jared today.

Time to pay some bills.

Monday, April 24, 2006 12:20 AM CDT

Note Cassie's essay at the top of the page!!!

seven days until my little baby became an angel. sigh. i think i will be alright on the 30th. she past just after midnight, so the 29th will be hard. it would be a good time for a bottle and a lot of crying with close friends. however, cassie will be with me. always have these grand intentions, just never make it. i am truly a wuss.

still haven't heard back on my tests. i guess no news is good news.

The trees at my house start coming down today. 29 i have tagged and most are enormous. all the pines will be history. i think this will really help the remaining hardwoods. I think it was last year about this time that i had new flooring put down.

still remaining swamped at work. i learned how to check my spammed email at work. after a yr of just not receiving stuff. now i know why and now i know how i can retrieve wanted messages.

Trying to figure out what Cassie and I are going to do June 17-25th. Our plans have changed a hundred times for the summer and we are still a month away.

remember all the angels. pray for the soon to be angels and the families that will be left behind.

Tuesday, April 18, 2006 12:20 AM CDT

I hope every one had a Blessed Easter.

I first want to welcome Stephanie Rose. She is Angel Rachel's little sister. Please stop by their site. I can't wait for the pictures. i am sure Danielle is jumping up and down. and jeanne looked so wonderful during her pregnancy. and steve is one helluva dad and hubby!!!

thank you Paulette for mentioning Cassie's essay award. Cassie is so very private about what she wrote. all 5th and 6th graders had to write an essay titled, 'If I could change one thing...'. Cassie got first place in the school. But she won't tell anyone what she wrote about. i read it. and she finally let jerry read it before she submitted it. but she refused to even tell her stepmom which created a bit of an issue. she is so embarrassed by the subject and depth but is very excited that she won. i wish she would let me put it here, but i doubt it. cassie worked very hard on it and it took her the entire week.

Easter was so difficult. Cassie wanted and had an easter egg hunt. she and jerry went around to the front looking for eggs. i stayed on the back porch and could see savannah in the wheel chair two years ago. i had my breakdown. alone. but i wouldn't want to ruin everyone else's day. later on, jerry asked to watch videos from two years ago. i said sure and set it up. i thought it would be nice. boy, was i wrong. it was more frightening than the scariest movie i have ever seen. i just lost my cookies. i CANNOT believe we went through that horror. i can not phathom it and yet i am watching us all live through it. mom, helping the girls dye Easter eggs. dad, pushing savannah in the wheel chair in the house for her Easter egg hunt. jerry, like a good dog taking commands to do this and do that. cassie, so so so good with her sister. savannah would point to an egg and cassie would go get it for her. and poor savannah. she is dying and you can see it. her beautiful blue eyes couldn't track together, sometimes you could hear a faint sound from her, her head and eyes couldn't remain stable like she was drunk or something (like a big freakin' tumor in her head bleeding), so big from the steroids. my little pip squeak was trapped. all i could say was, 'how did we do it?' the next scene was from 4-21-04. she was just waking up after having another major bleed two days before. she could barely move and couldn't speak. about all she could do it roll her eyes. all she did is look into my eyes. my mom had the camera going on us. then the tape ended. just like my daughters life.

what jerry and i agreed on is that this has not gotten any easier after two years. time and lots of it, i guess.

Wednesday, April 12, 2006 5:13 PM CDT

it has been quite a while. shame on me. frankly, i have not been up to writing. i have been dealing with my own shortcomings. i think the stress is catching up to my body. i need to make some changes. sunday was bad. i actually began the day with a horrible anxiety attack. it was the worst of what i had been experiencing as of late. i hate it because mine don't go away. i drown myself in work. don't converse, just stay at my desk. it keeps my mind focused on just one thing so i can't panic. i have allowed so much to build. things that need to be done. i procrastinate and they begin to loom over me. i am starting to make myself actually tackle these things. like the trees that need to be removed from my yard. the party we will have over memorial weekend. a physical.

cassie is doing fine. she is taking her SAT9 tests this week. i guess all the kids are. she forgot her glasses this morning (after I reminded her to put them on her face so she wouldn't forget). i hope it didn't cause too much damage. she wanted wierd food to eat before the test. brownie this morning. we have all kinds of hot food to eat and she wants a brownie. she told me when she heats it up it 'will' be warm. okay, how can you argue that? a homemade brownie is probably more healthy than a poptart (which is not allowed in the house...can't stand them). well, tomorrow she has a big bag of grapes to take.

Wednesday, March 29, 2006 7:07 PM CST

i would like to thank everyone for their very nice posts.

i just seem to be skating along. kinda blah. kinda dead. i am so focused on my work though, i forget i need to walk across the street to the bank. escape i guess. better for my employeer. i am scared of getting excited about things for myself so i have backed off. i can't save the world. i know that. God, how i know that. but for some reason i feel i keep trying. i catch myself and remind myself that i will only hurt myself by doing this. i feel so tired right now. it is temporary. laughter eludes me right now. if it wasn't for a couple really good funnies i got at work today, i doubt i would have ever cracked a smile. cassie has added attitude to that. she wants to go play after school, but she can only concentrate for such a short while after she gets home on her schoolwork. it is impossible for her to do it later. i struggle along with her. i want to let her go play. but at the same time she needs to do her schoolwork. i let her go across the street when Lawson is there. I then suffer through the evening with her. my choice. i don't think there is a good answer. i hate myself when i raise my voice because she gets so sidetracked and can't focus. i hate myself when i have dreams that others can achieve what they want. only to find out it is not what they truly wanted. i hate i get excited.

Friday, March 24, 2006 1:10 PM CST

We are home. well, I am. Cassie is in Illinois with her dad visiting relatives. STL was great as always. We even got a special treat. SNOW. Cassie got to go sledding for a while. Part of me loved to be in it, but the frost bite i got when i was 14 really acted up.

We went up the arch (it is a joke that most people who live there, have never gone there...which seems to be true), to the planetarium, the Titanic exhibit and subsequent OMNIMAX film, the Science Center (twice), sledding, a fancy Italian restaurant, and St. Pat's in Rolla. I got to go to a class on ADHD children at one of the community colleges. We stayed with and visited 4 different sets of friends and their kids (human and animal). Cassie and I were in heaven everywhere we went.

The trip was bittersweet. Two yrs ago we took that final vacation to St. Louis with Savannah just days before she entered hospice which was on the 22nd. We went to a few of the same places. Much of the time, she was too tired. I stayed with her at the hotel and jerry took Cassie out on adventures.

Time to do more errands.

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i have been glossing over my feelings as of late. not wanting to ruin anyone else's peace of mind. 'i am fine', of course. i lie. big time. i am sure the big guy forgives me. i really feel i am doing such a good cover up job. two yrs. two yrs ago we entered the worst nightmare imaginable. the final days. hope vanished. no, hope was never gone, just reality ...in your face.

while in st louis we saw Donna first. she still had the little vase in the window sill that savannah painted for her during her last time up there. savannah was in a wheel chair when we went to st louis. she was tiring sooooooooo easy. steroided out and obese. but she wanted so bad to go and stay in hotels. my kids are both hotel junkies. i had let her plan out all the places to go, not cassie. and then when it came time to go, she didn't want to. she was too tired. i sent cassie with jerry. i remained in the hotel with her. any parent who has had a child on steroids at such a high dose and for a long length of time knows how obsessive they get. she constantly was wondering where jerry and cassie were, what they were doing, when they were coming back, when were we going to eat, what we were going to do next. she would start at the beginning of this list and start asking me. the entire list of questions was repeated every three minutes even though she remembered my answer. God, looking back, it was aweful. so aweful. but at the time i didn't care. she was dying and had just DAYS to live. what the hell else could you do? drove me nuts. but there was nothing i could do but accept. how would she feel if i told her to stop asking questions? i wanted to yell. i was crazy! but i didn't. i never raised my voice. i answered her again and again and again. i had NO choice. we painted those little vases and a little box. i have the little box on my bookshelves. anyway. after donna's we went to chris's. upon her stove sat another little vase that was painted by angel hands just two yrs prior. my mother has the third vase.

two yrs ago, i quit praying for a miracle. i began to pray for her death. i loved her too much to pray for a miracle of life. i loved her so much that i wanted her to go. i released her. i still hurt that i had to do that. i hurt because i did do that. yet, i would do it again in a heartbeat. this month, the images of the time during hospice flood my mind. from the strokes or bleeds or hemmorages or whatever one wants to call them to her recouperating from them, never regaining full capacity. watching a child have to endure this is cruel. i can't write about the individual memories right now. i see them, feel them, relive them, but don't feel like writing them. i want to move her back in here to the computer room, but can't because we have company.

i asked jerry to take the day off and be with me. i have had no time with just him. the whole ride home, i daydreamed about the evening. telling him about the vases. about being at the same places we were two yrs ago. how it was heartwarming, yet gut wrentching at the same time. how i wanted to run yet never leave. i was reliving the turning of the page to her final chapter. life always changes things. he was asleep. i unpacked the SUV, started laundry, and looked forward to doing it today. i did the glossing over thing. i am so good at that. so bad at just saying what i mean. but you just can't come home from being gone a week and breakdown. that is just not fair to him. we need to enjoy the comfort of eachothers company without tears and fears. but then the phone rings. we are getting unexpected out of town company. just happens (never happened before) that we are both off on a workday. my doors are always open and i won't deny a friend a place to crash or just to visit. he was planning on leaving this pm. until he got a call delaying it. so he gets to stay until tomorrow. this is fine with me. it gives me the excuse to slam the door to my emotions. i have my whole life to grieve. but seldom anymore to we have guests. and i miss that so much. it was always so important to me.

so why am i in here writing? i honestly can't answer that. i am usually right in there but i am still breaking down, so i vanished to the computer. i am trying so hard not to cry and make any noise. or blow my nose. jerry is sensitive to those clues with me, and i don't want to take away from a visit for him with his best friend. dang, i am loosing it. so here you have it. he won't read the site, so i can't hurt him by writing.

i don't want to be whiny to anyone. i pretty well take care of things myself, very independent. i generally want no help. if i can't do it myself, i just won't do it. but that i learned was wrong. i did need help. i do need help. i need someone to hold my hand. i need someone to hold me. i need to be taken care of. it is actually humiliating to be human, don't you think? so i unburder my soul to a keyboard and send it out for public scrutiny. am i crazy? maybe, but someother parent may be feeling the same thing and it would be wrong of me not to share.

Friday, March 17, 2006 8:58 AM CST

Happy St Patrick's Day!

Today Cassie and I begin our spring break adventure. We are going to start at UMR, known for their St. Pat's festivities. We are planning on seeing alot of GDI/UMR alumnae. I really need a vacation. But i also have so much work to do. i feel guilty about leaving it.

The week has been busy. We are healthy once more. Had some crap go down, but it was worked out.

Did parent teacher conferences yesterday late afternoon. Cassie is doing exceptionally well. However, she does have room to improve. She is so hard on herself, but that may be a good motivator.

Have a wonderful day. be safe in all activities. i will update when we return.

Tuesday, March 14, 2006 7:49 AM CST

Cassie's birthday.

She had been progressively getting worse and I took her to the dr the morning of her birthday. (what a present) She was so scared that because she had a fever she couldn't go to school or have her slumber/birthday party. the dr cleared her for both. only one friend came because of the state basketball championship. BTW...the girls team won...State Championship.

The girls made a devils food cake. We ate off the fine china and drank out of crystal. Finally, during dinner, UPS pulled up. I met the guy on the porch and told him that I had been expecting him. Cassie was bouncing in her seat. She knew who they were from. I did make her wait until after dinner was over. I even got my own box. Okay, we were both jumping up and down about it. Jerry got in and finished dinner with us. Cassie was still puny, but really was too excited to let it keep her down.

Friday, the girls had no school. They were wonderful. I worked on maps until I was blue in the face. Saturday, company went home. It was great but also exhausting.

Next week is Cassie's spring break. I am taking her to St. Louis. We have a very busy aganda. It looks like it will have to be cut short by a day. Cassie is furious, but she will have to get over it. We will still be able to do everything she wanted.

A coworker of mine passed away yesterday and one of our retired supervisors passed away last week. Between this and the firing of a 1/4 of my department, it has been very hard on us here. But we go on.

Thursday, March 9, 2006 7:44 PM CST

Happy Birthday Dearest Savannah.
Could you hear us sing?

i gave birth to an angel. i can't feel her today though. it makes me sad and guilty. sigh!

Nine yrs ago today i was on my feet. my stitches removed almost a week before. i was so tired of being on my back. i needed to nest. i was doing laundry. my muscles so stiff form three months on my back. but the movement was refreshing. mark kept telling me to lay down. i would and would be back up in ten minutes. i sat down with Cassie at her little Fisher Price table and was doing stickers. i felt a huge shift in my belly. a scraping feeling from inside. don't worry i will leave out the graphic details. about three minutes later, i had a pain. OMG. contraction. the next one came in 2 1/2 minutes. then 2 1/2 minutes. then 2 1/2 minutes. but this doesn't go this fast. the neighbor who was going to watch cassie wasn't at home. i had to pack a bag (couldn't do that while on my back now, could I?) Within ten minutes, they were at 2 minutes. and lasted 45 sec each. gave me a bit over a minute to move and breathe.

i told Mark Cassie was just going to have to stay with our neighbor's son. we had to go, NOW! they were down to 1 1/2 minutes now, just 1/2 hour from when they started. Somehow I got myself into the truck. Mark seemed to take forever dropping Cassie off. We were speeding off to the hospital. I got very scared. This was all wrong. I grabbed a cigarette and lit it. Pissed Mark off, but at that point i didn't care. I had been so good for 8 months. and i needed something right then. don't even remember smoking it. i couldn't breathe, the contractions were too close. i think i just held it. he dropped me off at the front door. i waited while he parked. i didn't know how i could stand yet alone walk.

we made it to maternity. i remember the nurse asking if she can help me. i said yes. my name is Lisa ...and I am having my baby NOW. she told me she was expecting me (gotta love small towns) and takes me to a room and hands me a gown. i couldn't get undressed. i started to cry. the contractions were a minute apart and were lasting over 45 seconds. i had less than 15 seconds to take a breath. the aids had to come in and undress me. the nurse told a LPN to find how far along I was when they laid me down. She went to work and was so very confused. The nurse was getting frustrated and asked her, how far along am I. She said she couldn't tell. All she could feel was the baby's head in her hand. Needless to say, at that point it got crazy. the dr was called and he was at a softball game.

they couldn't get a monitor reading because she was on her way out. one nurse held her in for 15 minutes until the dr showed up. he walked in, introduced himself, sat down, asked for a scapel and needle. he proceeded to cut as i proceeded to scream. he yelled to put the O2 on me. i forget my lamaze and couldn't breathe. and she was out. from beginning to end, including holding her in, lasted 1 1/2 hrs. well, by the time he stitched me up, i felt no pain.

savannah was a very traumatic birth. very quick. i suffered internal trauma, but she was healthy. she went directly to the breast. she was going to be opposite of Cassandra.

So happy. such an easy baby.

She got her shots. then got sick. fever. back into the hospital for spinal tap and cathedar. newborn don't get fevers. since then i have found that fevers may be an allergic reaction to the toxins mixed with the immunizations they give. she was healthy (except constant ear infections...right were her tumor pressed into her ears from the inside) until she got diagnosed. i am not saying to deny your child immunizations.

didn't mean to go here.

that day, i really did give birth to an angel. that baby would glow when she looked at me. she did until the day she died. maybe i needed her more than she ever needed me. i don't know. i didn't even think i needed anyone. i miss her. i just wish that i could feel her today. i really do. this is very wrong. this is kinda how i felt last yr.

i still have more to add to cassie's birthday. i will not forget. but now i have to get back to jerry and cassie.

Tuesday, March 7, 2006 7:20 AM CST

this was my entry from the 3rd of march. it didn't go and then now my adress is screwed up.

i have more to write on cassie's birthday and savannah's upcoming birthday in two days. but this is enough for now.
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several things

first, we have a new angel today, ryan.

second, today we remember when heaven opened it's gate to Melody Shleigh. My 'other' sweet little redheaded spitfire. we will be lighting a candle shortly here for her. Rob, Deb, and Devin. We have not forgotten. We miss and love you.

third, i heard from tami. so jeanne and the other celeste...i will get you there.

the rest i will write and not number.

this week was horrible and wonderful.

wed at work they axed a quarted of my department. we were all stunned. i have worked for the phone company for almost 19 yrs and nobody saw this coming. they did a good job of keeping it a secret. i think us remaining will go through survivors syndrome. i know they chose at corporate level, but can't figure out why the ones let go, were let go. i cannot explain the horror felt that morning. i think we all expected on of ours received a new job and the opposite happened. a few were sent up to talk to the big boss. then they return and i realize what happened. my boss comes up to me, puts his hand on my shoulder and says...it is your turn to go upstairs. i alone go upstairs. i was gone before i heard him tell the rest of the crew. i was so calm. at that point i realized that it was not me, i was just a number. i was actually shocked to find out that i was employed. but part of our family died. i need to explain a bit. at almost 19 yrs, i am the least senior. granted, i have an engineering degree, but at some point, that no longer matters. i was there when children were born, i was there when others started kindergarten, bought mounds of wrapping paper and candies, bought them graduation gifts for high school and college. i have watched some of these same kids get married and watched another have her thesus published. we are close, we ARE family. it comes with the support and caring, the in each others business, the bickering, and the 'no matter how much you hate them, you love them'. and they were just axed. (ahhhhh, i just told my parents what transpired...it all comes back to life, the pain....but i am very familiar with how that works) Anyway, i have a job, by the grace of God. and we go on. i hurt. i hurt for the bosses that had to do the dirty work. as i told Jerry...if you bust your a**, all you get in the end is a busted a**. I was told that when i started working here by a fellow employee long since retired. i never forgot. don't follow it well, but i remember it.

i leave THIS meeting to give a presentation at Kiwanis. As i pull into the parking lot, i get a phone call. cassie is running a fever. AHHHHHHHHHHH. i high tail it to pick her up. then (told you about the busted a** part) high tail it back to be at a 1pm meeting i have. blew off the presentation. set cassie down at my desk, popped a motrin down her, told her not to visit because she is running a fever, and RAN into the meeting. i am 'kickin' myself the whole way'. after 45 minutes, the meeting starts to lose intensity. i figure if i volunteer for something, i can exit and go to my main job (mom). so i do. and it worked. i scooped up cassie, grabbed two armfuls of stuff to work on at home, and hightail it outta there. i got a dr's appointment for her the next morning and sent her to her dad's. (i wanted her at home, but tey were celebrating her birthday that night). i worked until 8. jerry got there and i collapsed( okay, as much as i actually can collapse). i was beat to a pulp. feeling guilty for being a bad mommy, for being a poor employee because i had to be a mommy, for still having a job because i am a mommy, for being a crappy mom because i am a professional. (this balancing really sucks, chose one or the other to do it well). the phone keeps ringing and i hear...i just don't know how you do it. GUILT!!!!that is how we do it. SURVIVAL, we have no choice.

the day of cassie's birthday began at 3am. i saw jerry off and was at the office prior to 5:30am. running on nothing but adrenaline. i met up with cassie at the dr's office at 8:30am. it took forever, but she was cleared, fever and all, to go to school and have her party (sinus infection secondary to getting over a mild case of the flu). she was in heaven. i was so happy for her even though because of that i have a sleepover to deal with and 'still' have to work. i got it done. even documented the breaks i took to tend to the kids. from 5am until 6:30pm, but i got over 8 hrs in. i am whooped. i need to sleep. i need a vacation from my life. but heck, i am employeed, so i have no real complaints, just whining and exhaustion. oh yeah, survivors syndrome, too.

all this sounds bad. it really was good. this is actually the most important part of this post. see, i am remembering to put it into perspective.

Friday, February 24, 2006 2:08 PM CST

I love the following story, so it will remain.
the week. oh the week. where has time gone. last week and weekend pretty much were poopy. ups and downs. i allow myself to expect too much out of people. mom always told me i did. you just get disappointed. and yet i fail to learn. i keep holding out for the best in people.

cassie has been getting anxious on occassion. but due to the circumstances, i will remain quiet on this. she would want me to write about it, but certain things i always try to explain away or give the benefit of the doubt, yet she knows. but i do ask for you to send prayers and good vibes her way.

her birthday is in 6 days. she has been so excited about a sleepover party. we sent out the invitations, but it looks like all the girls except one in her class have a game. she is so down. i told her we can work on the time or even day. she is still so upset.

quiet weekend planned other than buying a gift for the birthday girl.

that also means that Savannah's birthday is in 13 days. what to get for her? she would be nine. she would probably be as tall if not taller than cassie by now. would she have filled out a bit or still have been a rail? i really hurt yesterday. i realized that i hadn't missed her in a while. i think about her all the time. but the hurt and then the guilt poured in. i just sat at my computer and cried. then went home and cried. at least no one saw me. maybe that is one reason i have felt so alone and unwanted. who knows.
------------------------------------------------------------------------------------------------------------------------The below story touched me so deeply. A bond between women, a bond between mothers. It still brings tears to my eyes. I feel the fear. In reading this again I feel the fear. I don't want anyone else to ever have to feel this. For Jeanne and I, it didn't stop. I can't say that the fear has stopped yet. I am so glad Celeste and Erin allowed Jeanne and I to be a part of this. Myles, mommy, daddy, and grandma are all doing great. We were blessed with several pictures that have brought me so much joy. I would like to thank Celeste and Erin for allowing me to share their story. I think Jeanne may also post this on Rachel's site.

Just a few days before receiving this story, I received one of the 'girlfriend' emails. one that talked about a girl friend to go the dr with you, be there for your children's events, etc. I think this story is a perfect example. I needed this and was granted this in a scare I had just a week before.
-----------------------------------------------------------

Erin had a doctor's appointment on Friday January 13, 2005. She was being checked every three days because of high blood pressure. On Wednesday, she had had an ultrasound and they told her that if she didn't go into labor by Monday 2/16/06, she would be admitted and they would start a pitocin drip.

But that Friday she was just going in for a check. Kevin had to work so I got out early and went with her to the appointment.

An aide hooked her up to the fetal monitor as had been done for each of the last several visits. No heartbeat. I watched the aide fiddle around with the monitor for what seemed to be the longest time. Her face showed no emotion except that her neck started to get red. She said that she was going to get a nurse and left the room.

I was sitting in a chair and reached up and put my hand on Erin who was on the examining table. Neither of us said anything. The nurse came in and they both fiddled with the monitor, unplugging the plugs and starting over. Nothing.

The nurse said that she was going to get another nurse who "had been doing this for 12 years." They both bolted from the room.

I stood up and put my hands on Erin. She started crying and saying "I can't take this."

Another woman walked in and saw right away that Erin was crying and asked what was wrong. We both blurted out "They can't find the heartbeat." This was a doctor and she stayed totally cool. Erin was in a half sitting position and she had her lie down and readjusted the monitor belt. There is was: ba boom ba boom ba boom.

Basically, the aide and nurse were trying to get a heartbeat out of a butt.

I think the whole thing lasted 3 minutes but seemed like an eternity. I remember thinking: "Is this what our journey is going to be?" Everything was in slow motion. But then it was over.

We went onto other things and I went out into the waiting room while she had another ultrasound. She came out and said that she would talk to me outside. They had determined from the ultrasound that she had to be admitted that night, that there wasn't enough fluid. Very different from the ultrasound two days earlier.

She was upset and couldn't get through her conversation with Kevin without crying. I must say that I was really good with her at that point and just said that they were being cautious and that the hospital was the right place for her to be. We went to her house where she met Kevin and they headed back to the hospital for the 7:30 PM admission time.

After dropping her off, I let myself feel all of the emotions from the afternoon. The three minutes of no heartbeat was swirling within me and as much as I tried to make my mind shake it off, it wouldn't. I stayed home that night (good thing because I was up for the next two nights).

I felt traumatized even though the trauma was past. I thought of the two of you, who have had those three minutes but they never ended. I knew that that time was over but my emotions hadn't caught up with my mind yet. I drew on your strength. I remembered the pictures of Jeanne and Rachel at camp three days after diagnosis. Your daughter right there and you with all of that knowledge inside you. I thought of Lisa's description of Savannah's diagnosis, which is some of the most powerful writing that I have ever read. Those minutes of fear that turned into forever.

I lay in bed and I began to feel at peace. My grandchild and daughter still had quite a journey to take over the next few days but those three minutes were over and they are just a story now and not a lifelong journey.

As I drifted. I felt Savannah and Rachel. I felt like the baby (now know as Myles!) was with them and coming to us. I felt a tremendous sense of peace. They were watching over him as he made his journey from there to here.

I wish that Myles could talk and tell us where he came from and who he knew there.

I have another story of my mom meeting Myles last week for the first time. There connection was incredible. She with Alzheimer's and he a new born babe. Unbelievable.

So....thank you both so much for sharing your stories and your daughters with me. I can't help but believe that there is something much much bigger than ourselves going on here.

Love to both of you and love love love to Savannah and Rachel.

Celeste

Friday, February 17, 2006 9:17 AM CST

The below story touched me so deeply. A bond between women, a bond between mothers. It still brings tears to my eyes. I feel the fear. In reading this again I feel the fear. I don't want anyone else to ever have to feel this. For Jeanne and I, it didn't stop. I can't say that the fear has stopped yet. I am so glad Celeste and Erin allowed Jeanne and I to be a part of this. Myles, mommy, daddy, and grandma are all doing great. We were blessed with several pictures that have brought me so much joy. I would like to thank Celeste and Erin for allowing me to share their story. I think Jeanne may also post this on Rachel's site.

Just a few days before receiving this story, I received one of the 'girlfriend' emails. one that talked about a girl friend to go the dr with you, be there for your children's events, etc. I think this story is a perfect example. I needed this and was granted this in a scare I had just a week before.
-----------------------------------------------------------

Erin had a doctor's appointment on Friday January 13, 2005. She was being checked every three days because of high blood pressure. On Wednesday, she had had an ultrasound and they told her that if she didn't go into labor by Monday 2/16/06, she would be admitted and they would start a pitocin drip.

But that Friday she was just going in for a check. Kevin had to work so I got out early and went with her to the appointment.

An aide hooked her up to the fetal monitor as had been done for each of the last several visits. No heartbeat. I watched the aide fiddle around with the monitor for what seemed to be the longest time. Her face showed no emotion except that her neck started to get red. She said that she was going to get a nurse and left the room.

I was sitting in a chair and reached up and put my hand on Erin who was on the examining table. Neither of us said anything. The nurse came in and they both fiddled with the monitor, unplugging the plugs and starting over. Nothing.

The nurse said that she was going to get another nurse who "had been doing this for 12 years." They both bolted from the room.

I stood up and put my hands on Erin. She started crying and saying "I can't take this."

Another woman walked in and saw right away that Erin was crying and asked what was wrong. We both blurted out "They can't find the heartbeat." This was a doctor and she stayed totally cool. Erin was in a half sitting position and she had her lie down and readjusted the monitor belt. There is was: ba boom ba boom ba boom.

Basically, the aide and nurse were trying to get a heartbeat out of a butt.

I think the whole thing lasted 3 minutes but seemed like an eternity. I remember thinking: "Is this what our journey is going to be?" Everything was in slow motion. But then it was over.

We went onto other things and I went out into the waiting room while she had another ultrasound. She came out and said that she would talk to me outside. They had determined from the ultrasound that she had to be admitted that night, that there wasn't enough fluid. Very different from the ultrasound two days earlier.

She was upset and couldn't get through her conversation with Kevin without crying. I must say that I was really good with her at that point and just said that they were being cautious and that the hospital was the right place for her to be. We went to her house where she met Kevin and they headed back to the hospital for the 7:30 PM admission time.

After dropping her off, I let myself feel all of the emotions from the afternoon. The three minutes of no heartbeat was swirling within me and as much as I tried to make my mind shake it off, it wouldn't. I stayed home that night (good thing because I was up for the next two nights).

I felt traumatized even though the trauma was past. I thought of the two of you, who have had those three minutes but they never ended. I knew that that time was over but my emotions hadn't caught up with my mind yet. I drew on your strength. I remembered the pictures of Jeanne and Rachel at camp three days after diagnosis. Your daughter right there and you with all of that knowledge inside you. I thought of Lisa's description of Savannah's diagnosis, which is some of the most powerful writing that I have ever read. Those minutes of fear that turned into forever.

I lay in bed and I began to feel at peace. My grandchild and daughter still had quite a journey to take over the next few days but those three minutes were over and they are just a story now and not a lifelong journey.

As I drifted. I felt Savannah and Rachel. I felt like the baby (now know as Myles!) was with them and coming to us. I felt a tremendous sense of peace. They were watching over him as he made his journey from there to here.

I wish that Myles could talk and tell us where he came from and who he knew there.

I have another story of my mom meeting Myles last week for the first time. There connection was incredible. She with Alzheimer's and he a new born babe. Unbelievable.

So....thank you both so much for sharing your stories and your daughters with me. I can't help but believe that there is something much much bigger than ourselves going on here.

Love to both of you and love love love to Savannah and Rachel.

Celeste

Wednesday, February 15, 2006 8:11 PM CST

Adversity tests ones metal,
You have been weighed and measured
and found not wanting, My Lady.
Trust your instincts,
draw strength from family and friends.
Breathe love in
Let it flow in your blood
and that's where I'll be.
Have a very Happy Valentine's Day.

----------------------------------------------------------------------------------------------------------------------

for the past couple of weeks, i have been seeing ghosts, so to speak. memories, in my face. it seems that what ever i do, i run into a memory, ghost.

tonight i feel i have been lifted. however, i do know not to trust my emotions. but i feel good, free, light, and airy...so i am going with it. i may crash tomorrow. i think hormones, at my age, play a part. i am happy tonight.

one thing i love about being single (cassie understands that her mom is crazy)...the music is always going...not the tv, so i am always dancing around the kitchen. tonight, cass and i have been jammin to a cd that my best friend made for me for me birthday a few years ago. i cannot get the smile off my face. days like this have been so far and few inbetween. the grievances and hurts of the day just melt away in the notes. from Bernadette to Red Red Wine to One Hell Of A Woman. I am at peace. I feel Savannah reaching down with a gentle touch and smiling. God, how I miss my little angel. Does it ever get better? Any easier? Cassie and I have been dancing. something funny...she got out and finished off her bottle of grape juice from the winery...i thought that looked pretty good. i poured myself a glass of wine...red. right then...red red wine comes on. she got such a kick out of that.

I am happy, but i miss Jerry tremendously. He made the mistake of telling me he was going to come into town last night for Valentine's Day. I made the mistake of getting my hopes up. can we say...crash? needless to say, i took cassie out for dinner and put away what i was going to make. i won't ever tell him, though. i don't want him to feel bad. He said he will get off very early on Friday to make up for it. we will see. i know far too well what that means in the construction business. too many years under my belt. or too many life events? to ever believe such a wonderful and hopeful thing. the reality of it, puts tears in my eyes. how can you be hopeful? How? please tell me. 'you're only the best, i ever had' how funny to here that now. thank you. i do have an angel watching over me. to explain, the music never stops. 'can you take me higher?' from tears to smile. isn't that my life right now.

Savannah is no longer at the computer for me to hold. maybe i need to move her back. Oh how i miss my past. i miss those who made me who i am today. i give the greatest thanks but i hurt so much.

Monday, February 13, 2006 10:41 AM CST

Had a good week and weekend. Cassie is doing well after a kinda rough weekend but she woke up in such great spirits. Jerry and I found blinds for her room. But that was the only size they were out of, figures. And found blinds for my diningroom. It will be so good to have the scarred one replaced. But of course my windows all seem to be odd shaped. Typical.

Had a message Friday from a friend on his way through town, so we had unexpected company for the weekend. It was most pleasant. And had Lisa come over for dinner last night, also. Cassie arrived later, so she was able to see Disco for a bit before she went to bed. We had a blast, but I was sooooo very wore out from being stressed all day that I retired at 8:15pm. I couldn’t keep my eyes open. I liked it this morning knowing that I was going to have to straighten out all the bedrooms and sofa this evening. I really do like having a house full of guests. Cassie may not be too pleased when she has to help me, though.

Had a bit of snow flurries on Saturday. Very dry snow. It was quite heavy at times but never stuck to anything. It was awesome driving in it thought.

Cassie and I have started to plan her spring break. I have asked for her so we can do something. That way she is not stuck in daycare for the week. She has a list of things she wants to do in STL. And she suggested we stay with all my friends one night each so we can see everyone. She is disappointed that it can’t be for two weekends, though. I really do hate what divorce does to kids.

I had to add another angel to my board. Sigh!

For Celeste...LOVED the pics
For Jeanne...Loved the snow and Danielle pics
For M Elton...welcome back, still listening to the cds you sent me and think of you often


------------------------------------------------------------------------------
Adversity tests ones metal,
You have been weighed and measured
and found not wanting, My Lady.
Trust your instincts,
draw strength from family and friends.
Breathe love in
Let it flow in your blood
and that's where I'll be.
Have a very Happy Valentine's Day.

Friday, February 3, 2006 7:29 PM CST

What a week!

#1 Quiz Bowl. They got third. It was so exciting. The first team they played ended up placing first. But they lost by such a very small margin. The second game they played they also lost, but it was by another small margin. They easily took the next game. Them they ranked the teams. After lunch, the kids regrouped and went for the gold. They were a 4th seed playing the 5th. Took that game easy, which put them playing for third. The team they played for that was the team they played at the second game. Well, that was quite the blowout. I was so pleased with the team. so proud. from such a tiny school, to barely lose to the top two teams.

#2 Got to visit with the friend of mine who has the stomach cancer. He is quite a fighter. I stopped by with a coworker. I think i just held his hand for 20 minutes and talked. He keeps losing weight. I wish i could infuse him with my middrift.

#3 Cassie has a couple friends over. One for the weekend and one until tomorrow. So far, we, excuse me, they are having a blast. They had chicken noodle soup and grilled cheese sandwiches for dinner. I made them make there own. Still think that ten is a good age to start. I was a mother hen, but they were good, listened, and didn't burn themselves or their food. Still, quite stressful for me. Easy, but you have to start easy. They all liked it. I think I will take them out to breakfast tomorrow.

Coming home, one of the girls says that I like Evanescence. So what do they ask to listen to during their bath? Then they want to watch the dvd of the videos when they are done. I can hear them in the bathroom. preteens. laughing, singing, shreeking. God, I love being a mommy. I love watching these girls grow up in front of my eyes. I try hard to back away. Afterall, like i have told cassie before, my job is to be a mom first, a friend second. never confuse the two. i am not trying to recapture my youth. i want to smile at their growth. that has got to be one of the best feelings in the world.

#4 I will need to be very careful on the site for a while. Several other sites, such as Brenda's have gone through this.

#5 This is something I take quite serious. I know how I feel in my heart. But I want opinions from those who are regulars. It has to do with children sleeping with their parent. Does this damage a child. Does it comfort a child. Does it make the child dependent upon that parent (that was a new one on me). Does it keep a child from moving on after the death of a sibling. Does it stunt their progression into adulthood. Does it make them want to sleep with every tom, dick, and harry that comes along in the future. is there a harm. or is it a not socially acceptable behavior in this society (as is nursing a child past the age of one). Does this make you a bad parent. is this abuse or neglect. i am curious.

#6 Cassie has been sleeping much better since she has been back at school. i have her back on schedule. she can sleep with or without me. and goes to sleep easily. i mentioned before she was having sleeping problems, but we seem to have resolved them.

#7 This may be my all time favorite picture of savannah.

i can hear them, but time to check on them.

-----------------------------------------------------------------------------
Tues
wonderful wonderful weekend. little girls being little girls. wanting to be so grown up but still with obvious innocence. makes my heart happy.

yesterday evening was a downer for a while. three new angels. two i have been lurking and one was new to me. more angels to add to my board. i have their pictures ready to go, just need to get some glue. cassie also didn't feel good last night. she just felt like crying and her throat was hurting her. at least she was able to sleep last night. we went from being in a down place to being filled with smiles. it feels so good to be lifted up. we then spent a wonderful evening curled up together and watched a movie.

thanks for the input to the sleeping arrangements. i figure when she is ready to leave, she will. i do not see where it would drive her away from anyone else. that is preposterous. but as i was taught through many years, 'everything' is somehow my fault. so i don't lend it too much creedance. always have to look at the source. but i can honestly say that i do NOT regret having my children in bed with me. my angel was dying and her sister was watching. i could do nothing. so in to bed they came. with the warmth, comfort, love, peace, kicks, elbows, giggles, yells, i love you's, the bond. family. isn't that what it is all about?

Friday, January 27, 2006 7:40 AM CST

it has been a week.
tomorrow my 'little' sister turns 40. Happy Birthday Jeanette!

Next week is the big 'Quiz Bowl' for Cassandra. She just beebops around the house with anticipation. She is such a good kid.

Sometimes I get so frustrated at adults who live in this...the kids of today are bad...the economy is so bad...everyone is complacent...world. At Kiwanis we had a new preacher come speak. It was fine until he starts preaching on the kids today. Bet my booty i won't be stepping into his big church. he is not looking in the right places, wanting to stay blind. don't mean to sound negative, but what i see today compared to growing up is a world of compassionate kids. a world of kids giving up of themselves for others. i know it isn't all of them. i suppose i am overly sensitive. i saw an entire school full of kids reach out to a little girl who was becoming more and more dehibilitated and deformed. big kids, little kids. they didn't turn away, they embraced. and then some preacher has to talk about how bad kids are. maybe people just like hearing it. some other guests were just nodding in agreement. oh please. you all live in a cave. you don't have to go far to see the good. but it is much more fun to talk about the bad.

and the economy is sooooo bad? haven't figured that one out. the rich get richer and the poor get poorer. if this was truly the case, why am i STILL middle class. i was born middle class, grew up middle class, and am still here. there is extra spending money in their pockets for golf that wasn't there 30 yrs ago. but they are being held back by the economy. just can't grasp the concept through my middle class mind.

these are just all things you hear growing up. and i guess as adults we have allowed ourselves to be conditioned. and spout crap that has no meaning. yeah, there are kids that do drugs, kids that skip school, kids that steal. BUT there are also kids that are dedicated to family, God, and school. Dedicated to make this world a better place by sharing themselves with others. why is everyone so negative. People complain about the gas prices. well, i haven't seen more people doubling up and car pooling like we did in the 70s, but 'it has never been worse'. they still drive to walmart, they still drive to go out to eat for lunch, but 'it has never been this bad'. they just WANT to complain. what are they doing to help? nada. just the enjoyment of hearing themselves talk.

guess, i am in a down place right now.

we, as people, shouldn't have to wait until mortality is in our face to see the beauty of life. most of the time it is too late then. make an impact today. do something for the better. just don't talk. talk is worthless when it is not backed up with action.

Friday, January 20, 2006 9:23 PM CST

Tonight i would like to thank my youngest offspring. i will explain in the long version.

tonight it was just cassie and me. she made me (okay, she asked me and i obliged) to watch a disney movie with her. much of it was painful. the crimp in my neck and restless legs, plus it was a ....oh, i am sooooo bad...a disney movie. i made it through the whole thing. it was time for a smoke. i crank zz top in the kitchen. i did mozart and hair last night. didn't think she wanted that. okay, warned you...long version. she comes in and proceeds to start shaking and gyrating to zz top. get this...bad mommy, bad mommy...she starts to show me and teach me how to shake my bootie like beyonce to 'tube snake boogie'. never never did i do this prior to savannah, with the biggest gleam in her eyes and covered in bubbled who told me to just move my body. you just don't so that babe. mommy, she said, have fun. and she would move. like this, she said. cassie always did, but never got through to me.

what a sight that must have been in my kitchen. not pretty, but hilarious. cassie has those hip hop moves. i was a poor imitation. but i did it. as she said, while doubled over in laughter, 'your butt is jiggling'. thanks honey. 41, what do you expect. but thank you savannah for allowing me to find another path of fun. a smile. you were, or at least would have been. you would have rooted me on, jiggly butt or not. i can hear your voice, go mommy, go. it feels good. oh, how i miss you, baby. her smile. her persistance. that attitude! if there was ever a child born with it...it was savannah phoenix hurley. and cassie, bless her ever loving compassionate heart, finds all the shortcomings. what the heck. guess she gets that from her mommy.

there is a new little girl in her class this year. cassie and she do not get along. i found out she lost her sister in a fire and has been in counseling. even with the little ones lashing out at cassie, I am surprised at her. it seems there is no compassion, and my heart is breaking over it. cassie seems to reach out so much. yet, she has turned a blind eye to this girl. i hurt because of it and honestly, i an ashamed that she refuses to befriend her. i understand, it is not my life. i understand that some folks just don't blend. but i am stil flabergasted. is she scared? does cassie see the other side? i want to talk to this 10 yr old. i won't of course. but i want to ask her. are you mad? do things out of the blue piss you off? do you not fit in with life? do you not know where this comes from? do you sometimes want to cry for no reason? do you HATE yourself? do you yearn? I want to tell her that it is okay. it is okay because an old lady feels that same way.

i think that light switch just flipped.

how i miss being behind Jerry on the bike. doesn't seem to be in the cards. i have tried for 8 months now. i give up. time for bed.

oh, this is hard. oh, this is hard. and once more...oh, this is hard. can't believe i almost forgot the real reason i updated. tomorrow night, savannah will go to her resting place. her, so called, urn, arrives tommorow evening. i took har out of her temporary box last night. changed the bag she was in. had my hands buried in her ashes. my offspring. i allowed the ashes and bone fragments to run through my fingers, careful not to loose any of them. i ran my hands over my face and over jerry's face. you need an old soul for what i did. the most natural thing. cassie thought i had out a bag of sand when she walked in. she wanted to feel her sister through the bag. she even held part of her femur before i put her down for the night. kisses galore to you , my love. i have always had an earthly bond with me eldest. with my youngest and ancient bond, not brought to light until her illness. don't know how i missed it.

enough. sleep calls.

Friday, January 20, 2006 9:23 PM CST

Tonight i would like to thank my youngest offspring. i will explain in the long version.

tonight it was just cassie and me. she made me (okay, she asked me and i obliged) to watch a disney movie with her. much of it was painful. the crimp in my neck and restless legs, plus it was a ....oh, i am sooooo bad...a disney movie. i made it through the whole thing. it was time for a smoke. i crank zz top in the kitchen. i did mozart and hair last night. didn't think she wanted that. okay, warned you...long version. she comes in and proceeds to start shaking and gyrating to zz top. get this...bad mommy, bad mommy...she starts to show me and teach me how to shake my bootie like beyonce to 'tube snake boogie'. never never did i do this prior to savannah, with the biggest gleam in her eyes and covered in bubbled who told me to just move my body. you just don't so that babe. mommy, she said, have fun. and she would move. like this, she said. cassie always did, but never got through to me.

what a sight that must have been in my kitchen. not pretty, but hilarious. cassie has those hip hop moves. i was a poor imitation. but i did it. as she said, while doubled over in laughter, 'your butt is jiggling'. thanks honey. 41, what do you expect. but thank you savannah for allowing me to find another path of fun. a smile. you were, or at least would have been. you would have rooted me on, jiggly butt or not. i can hear your voice, go mommy, go. it feels good. oh, how i miss you, baby. her smile. her persistance. that attitude! if there was ever a child born with it...it was savannah phoenix hurley. and cassie, bless her ever loving compassionate heart, finds all the shortcomings. what the heck. guess she gets that from her mommy.

there is a new little girl in her class this year. cassie and she do not get along. i found out she lost her sister in a fire and has been in counseling. even with the little ones lashing out at cassie, I am surprised at her. it seems there is no compassion, and my heart is breaking over it. cassie seems to reach out so much. yet, she has turned a blind eye to this girl. i hurt because of it and honestly, i an ashamed that she refuses to befriend her. i understand, it is not my life. i understand that some folks just don't blend. but i am stil flabergasted. is she scared? does cassie see the other side? i want to talk to this 10 yr old. i won't of course. but i want to ask her. are you mad? do things out of the blue piss you off? do you not fit in with life? do you not know where this comes from? do you sometimes want to cry for no reason? do you HATE yourself? do you yearn? I want to tell her that it is okay. it is okay because an old lady feels that same way.

i think that light switch just flipped.

how i miss being behind Jerry on the bike. doesn't seem to be in the cards. i have tried for 8 months now. i give up. time for bed.

Tuesday, January 17, 2006 7:12 AM CST

When I picked Cassie up from school yesterday, she told me she wrote me a poem. I put it above. I couldn't help but cry a bit. I will save her other one in the history here.

I have a lot to talk about and nothing to say.

I did receive a Christmas card that had been floating around the postal system. I began to read it and was so overwhelmed i had to put it down for a couple days. such little things. no one else would notice. but from a parent who also lost her little boy, the little things spoke volumes. i finally read it on sunday and immediately began to bawl. i would read a line. then reread it. then reread it. i drank in every thing that was written. because I know. and she knows. the pain. we go on. but the pain remains. 3 1/2 yrs for her. mine less than two. i get hope that i can move on. that my family can move on. but i also know that the pain will not cease. there are a few that will see this. to the rest of the world, we will live a lie. i was able to feel relief in those tears.

i have a 24X36 poster board I had made months ago. all my angels are on it. they are with me daily and never do i forget. i am not the only one apparently. to find that out brings me great comfort. i also made a power point of my angels. i taught myself ppt by this creation. my kids. sigh. my extended family.

I had a hard time losing Justis. i just couldn't update. The problems their family was having with the site just after he passed was atrocious. How many other families do i know who have went through the same thing? Sometimes people are just idiots. and that is ashame. life is too short.
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check out the counter. just shy of 1/2 mil. i don't know how to feel about that. very mixed emotions. i am in awe mostly. that's a lot. i remember when it was 200, then 2000. then savannah went into hospice and it was increasing about 1800 a day. i remember starting this site because the other site was public and i wanted a private venue to share a story. a story that i needed in the beginning but never could find. i was compelled to document our journey to hopefully ease and comfort the next parent who was told their child was going to die. the only people who had access were the parents on the support groups. wow. now almost 500,000. i am embarrassed because of the spotlight. but i have been told repeatedly that my documentation has helped. so we are not private anymore. the site has been used against me with people i know. it has caused a great deal of strife for my household. but then i think of the one person who is desperate and searching. i can't deny them our experience as painful as it got sometimes. but i must be honest. this site has given me the most incredible support. when i am down, i am lifted. when i am happy, others are happy with us. an extention of my family. so for that, i thank all of you who come here, all of those who came here, and to those who continue to visit.

Sunday, January 8, 2006 6:05 AM CST

yesterday was so much fun. cassie was ready to go in the early morn, but we were waiting on jerry to get in and get started painting. we began our journey eating bbq. got there and nothing looked good to her. well, she ended up eating half of my sandwich. then went over to the next town to show her a 100 yr old catholic church. except there was a wedding going on. soooooo, we went to a winery. i decided to get her some grape juice there and mull it for her. that way we can both partake in mulled wine. hers just being nonalcoholic. except that winery was out. so we went to another one. i explained what i wanted and the lady took cassi into the tasting room. oh, she was so excited. she chose two. back to the church we went.

the bride and groom had made their way to the reception hall, so we got to go in and explore. it was magnificent. the two of us were there over an hour. we did the stations. the writing was in german. i read them to her and she translated. a gentleman gave us a guide to the church. we followed and looked at everything on the paper. there was even another couple that came in well after us and left well before us. and believe it or not, i figured she would be ready to go and so we would leave. but it was cassie would kept going back. aaahhh. this child, i would be honored, to take to the Louvre or another similar.

next i took her to an old general store in hunt, ar. unless you knew this place was in business, you would drive right by. the woman who owns it has worked there 73 years. i told her upon entering that i wanted my daughter to visit her store. she was so nice to her. cassie was in awe. from the old time cash register to the awning held up by stripped trees. we got ice cream before we left.

i asked cass if she wanted to next go to a old store/cafe next. she was game. up and into the mountains we went. i love the mtns in the winter. no leaves. you can see the bluffs and rocks. breathtaking. of course, we have no snow. she just chuckled when we got out of the truck in Oark. i think she was amazed at how little items there are to choose from in a tiny general store. but as i told her, they have all the essentials. the lady working asked if we wanted to eat. we said no and told her what we were up to that day. the lady thought it was so cool. we talked to her for quite a while. cassie remarked when we left how very friendly these people were. she asked where we were going next. i told her, i think Catalpa. so off we went after cassie got some skittles for the road.

at catalpa, we talked to the people working. they asked where we were from, etc. cassie just told them. she was having a blast. we got a drink and left. at this point i let her make the decision. paved highways backtracking to go home or gravel roads through the mountains. i am sure you can guess the route she choose. at one point, it got so bumpy, we started to sing as loud as we could. we were laughing so hard. we took the backroads all the way home.

jerry was done painting and gone visiting when we returned. it is a shame he couldn't come with us. i had wanted that day for the three of us, but it just didn't work out that way. actually, i wanted to do that on the bike with him but fate kept interceding. it ended up even better because cassie was so into our adventure. and nothing bored her. she was fascinated with every place we went. and THAT makes it worth it.--------------------------------------------
Wonders of Life

Wonders of life are floating around,
Just floating and waiting for someone to take them down
To read them
To use them to carry out their will
God’s plan is still up there with all the secrets and wills
You can find Gods plan if you try
All we have to do
Is live our life…


By: Cassandra Hurley

Friday, January 6, 2006 6:41 AM CST

today is the Epiphany. Cass and I will take down the rest of the Christmas decorations tonight. I have a special treat for her tomorrow. Jerry wants us out of his hair so he can paint. i am going to take her to an old catholic church. she is always interested in the german language and they have a lot of it written in the church. i also want to take her to an old timey store. would never know it was a still functioning general store. it is so cool. so tomorrow is an adventure. i had wanted to take jerry to these places on a bike ride, but it just never happened.

i spent a lot of time last night on my old pedi brain tumor group. it still bites. all the new kids diagnosed. the new angels. all the memories of the symptoms, treatments, meds, and relationships. what became a normal existance for 18 months which to a normal person is uncomprehendable. reading, part of me thought it was uncomprehendable. part of me thought, how do they do that? then i thought, what the heck are you thinking? i did it. i lived it. it is like a haze. i have heard it referred to as a war, or battle. and after, we do suffer PTS syndrome, the same as soldiers. you can see it in the eyes. i think most angel parents would agree with me. we looked dead and empty after our childern died. hollow. smiles are rare and forced. and they are ever so small. it is still hard for me to smile sometimes. it is even harder for me to laugh. even last week, i was told...Lisa, laugh, please, that was funny. i admit, it was funny, but the laugh escaped me. i wonder when i will get that back? will i ever get that back. i am not real fun to be around anymore. i guess that will come back in time. i read more on grief yesterday. still sounds like i am so very normal. the anger, the backing away from people. they didn't talk months. they talked years. sigh. i always knew the death of my child was not the end of the story. now it has become a story of survival because that is all i feel i am doing right now.

Tuesday, January 3, 2006 7:09 PM CST

i hope everyone reading had a wonderful holiday season. it is over now. cassie resumes school tomorrow. the tree is still up. us catholics, in general, wait for the Epiphany, to take it down. but we got everything else put away today. boy, that is starting at the end.

cassie was with her father until tuesday. i picked her up and we began to drive. we took a whirlwind trip up tp Il. Yes, Sharon, it was Lincoln that we went to. small world. we stopped by the cemetery on the way into town. i wanted to visit my mother in law. divorce will never disapate that family to me. the drive itself was so nice. i love the ozark mountains without leaves, the rolling hills of missouri, and the rich farmland of illinois. we stayed with my girlfriends in STL both coming and going. oh, time was way too short because i had to have cassie back to her dad for the weekend.

cassie is relaxing in a warm lavendar bath right now. a candle going. listening to George Winston. (Autumn...and if i am not mistaken, that is the first CD I ever bought) For some reason she hasn't been able to sleep at night. it started when she went to her fathers. but it has continued with me. personally, i would be in heaven if i could change places with her right now. i think that is an excellent way to conclude a busy two weeks.

we have been painting cassie's room. it looks like clouds. jerry will finish the trim this weekend. then i will do the doors. and why? since cassie sleeps with me? i still need to make it available to her. i learned from savannah that a child is not done until they are done. ie. the wee ones nursing. okay, after 40 months, mama got a bit tired but savannah was ready. to this day that was a gift i gave to savannah which i did not give in length to cassie. to cassie i give mama next to her while she sleeps. what i missed out on my first born, as a working mother, was the time. the only time i could really give my children was sleeping with them. after work, you come home, hand them a snack, let them watch Barney while you cook dinner. daddy comes home, we eat, i send him off to play while I cook and then clean and prepare for the following day. then i do bath time and we all hang out as a family for a half an hour. i would be plumb whooped. BUT i had to nurse and get the girls to bed. so OUT like a light i went. kinda like having a cat purr on you. a purrfect sleeping agent. anyway, how much time is that REALLY to have with your children. it was as comforting to me as it was to them. even though it at times was and is disturbing to be kicked and your covers being yanked from you, there is nothing better to feel the body heat of your offspring beside you.

way off the subject.

after the multitude of breakdowns...this is scarey to say, but i haven't thought much about Savannah. she sits beside me now. i am at peace. whatever that means. i guess for the time being i am calm.

i wanted to wish all the holiday birthday people who have etched a way into my heart, a VERY VERY Happy Birthday. you know who you are.

cassie is out of the tub and my little brother is on the phone. goodnight.

Tuesday, January 3, 2006 7:09 PM CST

i hope everyone reading had a wonderful holiday season. it is over now. cassie resumes school tomorrow. the tree is still up. us catholics, in general, wait for the Epiphany, to take it down. but we got everything else put away today. boy, that is starting at the end.

cassie was with her father until tuesday. i picked her up and we began to drive. we took a whirlwind trip up tp Il. Yes, Sharon, it was Lincoln that we went to. small world. we stopped by the cemetery on the way into town. i wanted to visit my mother in law. divorce will never disapate that family to me. the drive itself was so nice. i love the ozark mountains without leaves, the rolling hills of missouri, and the rich farmland of illinois. we stayed with my girlfriends in STL both coming and going. oh, time was way too short because i had to have cassie back to her dad for the weekend.

cassie is relaxing in a warm lavendar bath right now. a candle going. listening to George Winston. (Autumn...and if i am not mistaken, that is the first CD I ever bought) For some reason she hasn't been able to sleep at night. it started when she went to her fathers. but it has continued with me. personally, i would be in heaven if i could change places with her right now. i think that is an excellent way to conclude a busy two weeks.

we have been painting cassie's room. it looks like clouds. jerry will finish the trim this weekend. then i will do the doors. and why? since cassie sleeps with me? i still need to make it available to her. i learned from savannah that a child is not done until they are done. ie. the wee ones nursing. okay, after 40 months, mama got a bit tired but savannah was ready. to this day that was a gift i gave to savannah which i did not give in length to cassie. to cassie i give mama next to her while she sleeps. what i missed out on my first born, as a working mother, was the time. the only time i could really give my children was sleeping with them. after work, you come home, hand them a snack, let them watch Barney while you cook dinner. daddy comes home, we eat, i send him off to play while I cook and then clean and prepare for the following day. then i do bath time and we all hang out as a family for a half an hour. i would be plumb whooped. BUT i had to nurse and get the girls to bed. so OUT like a light i went. kinda like having a cat purr on you. a purrfect sleeping agent. anyway, how much time is that REALLY to have with your children. it was as comforting to me as it was to them. even though it at times was and is disturbing to be kicked and your covers being yanked from you, there is nothing better to feel the body heat of your offspring beside you.

way off the subject.

after the multitude of breakdowns...this is scarey to say, but i haven't thought much about Savannah. she sits beside me now. i am at peace. whatever that means. i guess for the time being i am calm.

i wanted to wish all the holiday birthday people who have etched a way into my heart, a VERY VERY Happy Birthday. you know who you are.

cassie is out of the tub and my little brother is on the phone. goodnight.

Thursday, December 22, 2005 4:59 PM CST

This has always been my favorite holiday picture of Savannah. I have had it out since thanksgiving to scan, but my computer had a bug until Monday. yes, i am a procrastinator. We were at my parents house that year. she is wearing a jumper her other grandma made for her. i wish. sigh. i just wish. can i have just ten seconds back? please? just at this time, so I can tell her I love her just once more. You can NEVER tell them enough. why is there sickness in children? why do people hurt other people? i want to hold her, to hug her. and i know why heaven can't spare just one second. it is because we would never let go. at that moment we belong to them and would never be seperated again. I'd risk it.

i was fine until this afternoon. actually, i guess i could feel the tide turning once more last night. here we go again. i laughed it off. same ole, same ole. nothing changes. i learn. i see the signs and i see it coming. don't say anything. what can i say? so last night i made the situation into a joke. this morning the haze began. couldn't concentrate. feeling betrayed. i finally manage to have peace and joy for the season only to have reality shoved in my face once more. i really either need to go out by myself tonight or just go to bed. tomorrow the sun will rise.

i visited a friend in the hospital. he had surgery again yesterday. i ask how he is feeling (stupid, huh?) he saiys fine but then most seriously asks me how I am doing. i lied, of course. the last thing he needs to think about is my baggage. how come there aren't more men like this in the world? I think everyone knows those half a dozen truly truly good men. he would never ever think that of himself. his wife is a beauty inside and out and i admire her so much. and once again to be able to visit with his parents was wonderful. one of those people that i can just hold his hand and there be nothing dirty meant by it. so refreshing. they will spend the holiday in the hospital. i hate that for them, but as he said...there will be next year.

i finally got my cd copies from my ex last night. i have bluegrass blaring now. it really is music to my ears. Windom Hill- Winter Solstace is next. Thought that would be appropriate. And I have my Handel cd back. so that we be on the lineup as well tonight. Hope it breaks my mood.

Cassie is at her daddy's. I do miss her, but I really needed some time alone, so to speak. Talked to her on the phone last night. She didn't want to let me go. She had me listen to 10 minutes of her keyboard playing. And then I got to see her last night when her dad dropped the cds off. It amazes me how grown up she looks. I wonder, with a very heavy heart, what Savannah would look like. Would she still have that radiant smile? Would she still have that take NO crap from anyone attitude?

I don't remember what she smells like anymore. Sometimes, in my minds eye, I can see her prediagnosis, but it fades. I heard a little girl crying today. I went to the aisle where she was. Her mother had been reprimanding her for being bad. That was fine. I just didn't like the mother's cussing at this two year old. I think that was the most defining moment of my turnaround. It had just been hazy, but then gone dark, and the light went out. I followed them for a couple aisles. I touched the button that I still wear almost daily. That mother HAS a child to misbehave. That mother HAS a child who can throw a tantrum. That mother HAS a child who can cry. I wanted to tell her to stop. She may not be there tomorrow. Mine's not here. So many I know and have come to love share this great loss. I grieve not just for me. I grieve for my other mommies and daddies who have to experience the holidays with a hole in their heart. I grieve for those who have prematurely lost a parent or a sibling. Only they can fully understand. This does not fade for a long long time. Moments of peace pop in. We can find utter joy with new additions to our families, but they are not replacements.

I really didn't want to write here while in my pity party. but frankly, i was tired of writing to my hard drive. i want the other mommies and daddies to know that even though you hide your grief, it is okay. i understand the continuous lying to the world. your burden is great enough. the pain you know, you would never want to put upon another. i will be okay. i may be dancing around the livingroom all by myself before the night is over. the lightswitch for moods goes up down up down up down.

please don't post...with i hope you feel better stuff. this is really just for me tonight. i will feel better.

oh, something off the subject. the differences between yankees and southerners. beans and cornbread. we had that yesterday at work. a comment was made about how yankees don't eat this. hmmmm. yesterday i had beans and cornbread with louisiana hot sauce on it. now, i got to thinking (dangerous). Growing up, one of my favorite dishes, which i had frequently was bean soup (consistancy identical...mayyyyybe a bit thicker). It had a bit of paprika in it and then we hit the vinegar big time. but no cornbread. we used a heavy crusted bread. really, it seems pretty much the same to me. so i think the southerners need to back off just a bit. and i happen to love biscuits and gravy. had it for breakfast with tomatoes this morning. and i even grew up with cracklin's and cracklin biscuits. and nobody in my home ever had southern influences. so HA! okay, feelin' better now and i hope everyone saw my distorted humor.

have a good evening. i plan on it.

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7:20pm
needed to share how quickly things change. I got done with my entry just an hour ago. put on a disco cd. cranked the music. the floors are rattling. and i was dancing. remembering how the girls LOVED these cds. how savannah taught me how to move my body when i danced. how the three of us would dance together. i am laughing, remembering wonderful mommy times with my little girls. savannah in front, cassie behind her, and me behind cassie. savannah would start a move. we would have to follow. then she would move to the back. we would do this for 30 minutes at a time. i am crying such incredible happy tears. i am sooooooo wrong! i am with my girls. as my best friend once told me. lisa, we will always have our memories. thank you, sweetheart. so right you are. we all have our memories. some good. some bad. they make us who we are. do not deny them, for they are us. whew! now that my chest has stopped hurting, i am going to dance again. us old farts can't do what we used to.
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have absolutely no sane reason why i am documenting this tonight. it is now 8:50pm.

have you evr been compelled to start to scream. scream as loud as you physically can? have you ever ended that scream with a mouth full of bile? have you ever danced with the ashes of your seven year old. thanking God for the time you had to mother an angel? have you ever wept such tears that made your chest and gut cramp that you couldn't move until they subside? have you ever cleaned your face and mouth, just to resume the anguish of emptiness and loneliness? knowing you will be accused of all sorts of hanus crimes. but all you know is that you want to be alone. you WANT to remember. you want to hurt. i risk putting this here. so many will know exactly what i write. so many will think i need help. so many will think i should be moving on. to those, I AM. I am acknowleding my pain. oh, how savannah loved this song. fly robin fly. she did. my little angel. how was i to know what was to become. she even had a blue bird hand puppet she used to sing this song with.
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Christmas Day eve
First, I hope all had a glorious Christmas. It can be such a stressfull time, both good and bad. Cassandra was my little savior for the holiday last night. Don't think she though too highly about me having Savannah's ashes under the tree. She asked (at least she is not the Hurley girl that doesn't voice a concern) why is Savannah there? I told her she loved being by the tree, remember? okay. She was satisfied and it didn't bother her after that.

She was so excited early in the evening. I told her to go ahead and get into her stocking. She got all the stockings and passed them out. But what was odd was that mine all of a sudden had something in it. She said, look mommy, I put some of my Christmas candy in it for you. No one should have an empty stocking. Now, how do you respond to such caring? It didn't matter at all to me that my stocking was empty. Beneath the tree was filled. I am so proud of Cassie.

I read a poem to the household that night. Something written and shared with me. It was beautiful. Santa visited in the night and left girfts for Cassie and Jerry. Afterwards Cassie realizes that mommy didn't get anything. I told her I got a special prayer and kiss from Santa last night. What else could he bring me? She was quiet for a moment and agreed. God, what a child! And a big thank you to S and M for allowing that moment of magic to happen.

I took Cassie to her father's this morning. It was painful. Guess the rest of the day followed suit. My highs and lows have been so frequent lately. I know not to trust my judgment anymore at either of these peaks.

Cassie asked why I was crying at one point. It was just a lone tear she spied. I told her that other parents had told me the first year of going through everything was just like the one gone was just on vacation. It is not until the second and third go around that it starts to hit you that they will never be back. You know they won't come back but deep in your brain it won't allow it to register too much. I think it is delayed shock that your body covers the first year. Christmas was nowhere near this hard last year. Of course, I have other stuff going on as well. don't we all?

Tuesday, December 20, 2005 2:17 PM CST

Christmas is upon us. It is snowing outside (okay flurrying). I am doing alright. Got my days. What is interesting is some days I am just NOT in the mood for the holidays. Other days I am just right on target. What makes it difficult is I then get stressed because I have allowed myself to get behind. Like Christmas cards. I started over thanksgiving. Got most out and came to a screeching halt. I finished last night. Gotta get them in the mail still.

Made lots of mulled wine last night. Lisa C. stopped by so I made her start to test the wine in progress. We did have a lot of fun. Cassie came home from the neighbor’s house bouncing off the walls. I am sure an uncountable number of butter cookies, peanut butter, chocolate, pretzels, etc passed that girls lips. She flip flopped around the bed ALL night long. I think we need to impose a limit at all the neighbors and friends houses. Either that or she can move to her own bed. I would lay money down on what the answer would be.

We had our Kiwanis Christmas party on Saturday. It went very well. This year we had huge blow up bouncy things. It took up almost the whole auditorium. The kids seemed to really have a blast. I passed out a bunch of Cassie and savannah’s little girl jewelry. Cassie had approved all items that adorned mommy to be given away. We had a lot of enthusiastic little girls. And a couple disappointed little boys. Oh, but the magic in the eyes of the young was incredible. Even the older kids, the way they watched and cared for their younger siblings was absolutely amazing. I hate that we need parties like that for kids, but I am glad we can do it. I hate it that some abuse the system, but I am glad that those in an immediate crisis can be seen through.

I will update prior to Christmas. Enjoy the anticipation.

Monday, December 12, 2005 1:21 PM CST

We finally have the Christmas decorations up in the house. (okay, the living and dining rooms) We did everything a lot different. No lights outside though, but we did put out candy canes. Last year was difficult. But nothing could tell me how bad this year was going to be. I couldn’t stop crying. On and off the tears would flow like a faucet. A picture of Savannah at her first Christmas on an ornament, then another ornament with her picture at her last Christmas, and she definitely was showing signs. Then a handprint ornament from when she was one. Then a communion picture of her. They just didn’t stop. And ALL are on the tree. I will be honest. The picture of Savannah ornament from 2003, I put on the back. I couldn’t stand to look at her dead eyes. I am so sorry she had to endure that. I wish there was something to make the guilt disappear from not being able to stop the cancer. But then at the same time I wish I had more guilt. Go figure.

Cassie and Jerry seemed to be having a good time so I hid my tears. Yeah, that only causes problems. I had to keep leaving the room midstream. Cassie did catch me though. It is awful what I put her through. I was squatted down putting a pot away when she laid her hand on my shoulder. She asked…are you alright, mommy? Needless to say, there I went again. She was just quiet, held me, and let me cry. And poor Jerry just thought I was mad at him because he screwed something up. I so much wanted to be held. I so much wanted him around me. But at the very same time I pushed him away and told him I was fine. Well, I was at that very moment, so I didn’t lie. I didn’t seem right to burden anyone when they were having a good time, but I guess I burdened them anyway. Cass and I do have the Christmas village to put out still.


We all went to our Retreads Christmas party on Sunday. Cassie went from being a bored 10 yr old to a very busy, in demand, girl. She got to pass out all the presents. So back and forth she went. She talked incessantly this morning on the way to school about it. I asked her if she was getting all the talking out of her system for the day prior to 7:30am. She said yes. I hope so. Otherwise she will be getting bad conduct marks to start out the week at school. We had a very nice time. Still don’t know a whole lot of people in the club, but they seem very welcoming. We even had several out of town bikers come in for it. I remember thinking I will NEVER know all the people in my Kiwanis Club (I cannot remember names). It took about eight years. So maybe someday, I will know all of them.

yesterday marked the anniversary of savannah's mri revealing the growth (like we didn't know that). her last irinotecan chemo. the day i allowed the doctors to put her back on steroids. i kept it to myself. enough drama.

Thursday, December 8, 2005 7:12 AM CST

Note the new poem that Cassie wrote. we tried to put it on the page yesterday but it wouldn't let me in.

we have a dusting of snow. cass cried this morning because they had school. bless her heart. she was so looking forward to being off today.

last night we had little ice pellets coming down briefly followed by big flakes. i scooped a bunch up and went to wake her up. at first she was MAD. i told her to grab a robe and come outside. let's watch the first snow of the season together. we did for about 30 seconds. that was enough. she is all bundled up today. the works. it is not very often i have to get out the real winter stuff. but we do have it.

well, so much for working in the field today. we were supposed to go to NW AR, but the other counties are pretty rough. all the schools in the surrounding counties are out. plus, i really need to stick around in case we get more snow and sacred heart lets out early. i need to be close, not 2 1/2 hrs away.

we primed cassie's walls last night. slowly getting there. hope everyone stays warm.

Friday, December 2, 2005 7:28 AM CST

Thanksgiving has come and gone. We had a wonderful time with my folks. Cassie whined on Sunday morning after they left. She wanted grandma to stay. It felt so good to see their relationship back to the way it used to be prior to Savannah's illness. We all seemed to work all weekend. Mom and Cassie cooked, sewed, and played games. Dad, Jerry, and I raked leaves. And even Sunday after they left, Cassie, Jerry, and I filled up his pickup three times with leaves and pine needles. We got done just in time for the big storms to come in. Cassie got all freaked when the sirens went off. she kept giving us updates every five minutes of where the tornados were. they always skirt around russellville so i wasn't too concerned. I must admit, i was shocked the next morning when i pulled car pool duty. the liquor store we go to was demolished. i took the girls there in the afternoon to see the path of the tornado. the destruction always amazes me. a narrow path with everything tore up in it and then on either side complete normalcy.

i tried updated yesterday but couldn't get in. i still fight those highs and lows. the switching from one to another is instantaneous. i think this is insane. for instance, yesterday, leaving to pick up my lunch, the daycare next door were coming in from playing. i was watching the little 3-4 yr old girls walking. i busted out into tears. they were so cute. i was overwhelmed. that lasted about a minute and i was fine again. then i thought about a friend of mine having surgery. the flood began again. got it in check. picked up my lunch. and proceeded to cry all the way back to the office. then the flood gates closed and i went into work. i would never have thought it was possible to switch emotions so completely.

Last Sat Jerry and I did the toy run for the mission here in town. it was so cool. i had a difficult time getting on the bike because toys were hanging out of the saddlebags and bungie corded. not much room for me. we got a police escort through town on the highway. one thing i really like about small towns is the respect people show. we had the north bound lanes. the southbound lane traffic stopped. there were a couple people who drove on by (most likely big city folks). we all filed through the mission and filled a room with toys. it made for a good saturday.

cassie and i have been hanging out this week. just vegging watching movies and shows. found out a friend of ours was coming through last night. oh cassie was so excited. she was going to cook for him. which she did. but when he actually arrived, i took the lid off the wok and saw that she hadn't left him more than a small snack. she lowers her head and says...but it was sooooooo good. it really was cute.

Wednesday, November 23, 2005 6:24 AM CST

i would like everyone to hop over to rachel's site in PA. you know how to do it. we need much more wonderful news. news that doesn't relate to pediatric cancer, or the brain, or grief. and i have been dancing in my seat. being swore to secrecy has been so very hard.

mom and dad made it in just fine. cassie got to join me in the afternoon at the dentist's office. i don't think she ever really believed me that i enjoy getting my teeth cleaned.

cassie was so hyped up last night. she was telling us all her plans of making thanksgiving today. whoa whoa whoa little one. she finally settled down and we all watched Beethoven last night.

time for work. have a great turkey day tomorrow. we really all do have a lot to be thankful for.

Tuesday, November 22, 2005 7:29 AM CST

A very happy turkey day to all.

cassie is so looking forward to her grandparents coming to visit her. she wants to cook all day tomorrow with her. it will be my moms turn to stress in the kitchen. she won't know what hit her because cassie does not want to help someone else cook. she wants someone else to help her. THAT is a big difference. i hope it all goes well.

i am going to sneak off in the wee hours of the morning and go to work. old habits die hard when my parents come to visit. i never have fully recouperated from vacation time since savannah passed away. of course our two vacations this summer helped that.

i remember thanksgiving of 2002. savannah actually took a nap. i woke her up to eat. except she didn't want turkey with all the fixings. she wanted 'lentil soup'. the steroids were already making her quite obsessive. so we heated her up some lentil soup. then thanksgiving of 2003 had another memorable moment. we asked savannah to say grace. she so proudly prays 'The Act of Contrition'. Everyone at the table had to chuckle. you may have to be catholic to get that. maybe i will ask cassie to pray that on thursday. just so we can relive the moment. oh, savannah was so proud and didn't give a flip about the type of prayer. she was just sharing a new one she had learned. a prayer is a prayer. for a 6 yr old, that is just fine. now all you catholics...try to recite, 'the act of contrition'!!!

Have a Happy Thanksgiving.

Thursday, November 17, 2005 12:59 AM CST

one week until thanksgiving. we have special plans for the holidays. i think we are all getting excited. i know cassie is. the two of us will be very busy this weekend preparing. we always celebrated my grandparents anniversary on thanksgiving. since i received my grandmothers wedding band, i wear it on my right hand. thanksgiving was always for my oma and opa. time to start something new.

Wednesday, November 16, 2005 7:06 AM CST

Back from out of town. It was long and grueling, but we got a ton done. I missed Cassie. She was well taken care of though.

Cassie is doing fine. She is very excited about the Thanksgiving holiday. I have made arrangements for Wed for her. She is absolutely thrilled. I remember being so exited about a five day vacation from school.

Last night we had to write a parable for her religion homework. Religion homework always seems to take us the longest to do. We had the idea of MYOB and judgment but went to something much more simple. Maybe I will write it here, if she allows me.

We did talk last night about getting into other people's business. she had made some comments about adults sounding like they were in kindergarten with the way they carry on. don't think she will grow up to be the type to talk and assume about others. she has listened and heard first hand and has brought it to my attention. she asked why. then she said...is that ALL they have to do? what a smart little girl. one of the rotten apples scenerios from her parable. but i need her permission first.

Thursday, November 10, 2005 11:36 AM CST

Everything has been fine. Then a memory hits you out of the blue. It tears you down. The pain and subsequent tears begin.

My mom had just come back down to Arkansas to care for Savannah while I worked. Jerry had gone back to work. Mom's first day was Mon. I dropped Cassie off at the bus stop and got to work at 7am. At 7:45 mom called. Lisa maybe you better come home. Savannah isn't responding well. Aw hell. But i didn't go home. I went to find Jerry. He had given his cell phone i got for him to his aunt for a couple days. I had to drive the other way from my house to find him. i thought that if Savannah was in pain, he was the only one that seemed to be able to communicate with her. They had such a special magic between them. except the site they told me they would be at, the crew wasn't there. so back to the house i start. i am in the middle of town and mom calls again. paniced. lisa come home now. savannah is NOT responsive. GOD, how much time have i just wasted, 1/2 an hour. i should have been with my child and to hell with everyone else. he had made the choice to give away his cell phone, not me. and yet i wasted a half an hour trying to find him. i am so angry at myself still for that. i SHOULD have been with Savannah. Because I insisted on hospice just 2 hours later, medically we don't know for sure what happened. but i will tell you what happened. her tumor began to hemmorage. she was having a massive stroke. my seven year old little girl. and i was at work and running around town trying to find jerry. i wasn't at home with her. my mom was robbed of her special together time with her. all she got was 45 minutes.

that morning will forever haunt me. i failed my daughter because i was trying to find someone. i failed my daughter because maybe we would have sought medical treatment earlier. i failed my daughter because i was not there with her. damn it. our job as parents is to protect our kids. she was dying, but that still didn't mean the protecting stopped. i should have been there. i can see her on the sofa. eyes open, staring, unresponsive. an occasional grunt. then nothing more. and i was driving around town because of someone elses choice. oh, how i hate myself today.

it is supposed to be a good day, too. i have a retirement reception to go to. and cassie is on the mend.

---------------------------------------
Fri

Thanks for all the comforting comments. But i think parents who have lost their children go through this. Every so often we get flashbacks. These are just so emotionally charged that it plummets us into despair.

I couldn't seem to stop it. I left the office crying and still couldn't get it out of my head. that is when i decided to come back and write it down. I did cry while writing though. Surprised the guy I went to Jacksonville with didn't say anything. All my mascara on the bottom was gone. anyway about 20 minutes after putting it on paper so to speak, i was fine. okay, not fine, but much better. i could remember without the pendelum of emotions.

one full day on antibiotics and cassie is back to herself. but somehow I still got a ton of stuff done last night. i brought home work. a big no no for me. i have been doing this all week. but cassie was puny and just laying on the sofa, so i worked. she went across the street for a while yesterday, so i was able to finish what i brought home. it is amazing what you can get accomplished when there are no interuptions.

maybe it is still just the 'keeping busy' mode i am in. savannah had just started radiation on 11-6 and she got so bad she was readmitted to the hospital.

i think the first year you are still in shock. it is after all that wears off, the littler things start reappearing. like, i don't think i thought about savannah starting radiation or having to be readmitted to the hospital a year ago. i remember the ambulance had to transport her to and from (a mile). i couldn't do it because she was a patient. I kept thinking...the bill the bill. and the drs are thinking...she won't make it two months. She had to have a LPN or something like that go with us.

enough for now. i will revisit this someday i am sure. it is not a bad thing. it is part of her story, her life, our lives.

Monday, November 7, 2005 1:05 PM CST

We had a nice weekend. Cassie got to finally spend the night at my friend’s house without me. She has been wanting this for YRS.

Jerry changed apts Fri so we didn’t see him until sat. he got in just in time to go watch a friend of ours little boy play soccer. To quote cassie, ‘they are sooooooo cute’. We kicked the ball around ourselves for a while. Been a very long time for me. Our foliage colors are at peak now. The mountains are breathtaking.

Sun morning we went to our Retreads meeting. Cassie was smart and took something to do. Missed last month because Jerry worked. During their after the meeting ride, there was a wreck. One of the members died. Please say a prayer. I guess it will be spring again before I ride. With having cassie full time now there is no time for me to go with jerry. she is still to young to stay by herself. Jerry has been the only one to wear my leather this year. Everytime I bring them along, something happens, like rain. He may ride in the rain, but I don’t have to!

Jerry did yard work all day. I did inside stuff. Cassie was great.

Last night as i laid in bed i was remembering during hospice when i awoke to find savannah just staring. i couldn't stay awake. my gut clentched. it is funny how these flashes just come out of nowhere. most times i allow them. i chose not to. we had a good weekend, cassie was getting ready for bed, and i didn't want her to see me crying when she crawled into bed.

jerry had one of those out of the blue moments as well that afternoon. at least i know i am not alone and neither is he. but they are so very uncomfortable. okay, extremely painful. but they are still not a memory i would change, for it is a connection to my little girl.

Friday, November 4, 2005 7:09 AM CST

Things slowly seem to be getting better for me. the days seem brighter. i can smile. being able to laugh at jokes still eludes me.

Tues i had a couple talks with cassie. she seems to be over being mad. but she got the attitude that she just no longer cares. that scares me. she kept telling me to tell this person or that person about what happened to her. i told her i'm not saying anything, but i certainly won't stop you from talking. you could tell she was still angry and scared.

jerry came in on wed night to see her. she wanted to make him dinner, stuffing and grilled chicken which she did. i swear, the two of them glowed, chasing each other around the house giggling and laughing. we all played cards, too. he tucked us in bed. cassie slept really good that night. she really does have a calmness about her when he is there. his boss even told him not to show up in fayetteville until 9:30 in the morning. he was able to get up with us. cassie said she LOVED him being there in the morning.

and yesterday she seemed to be back to he old self. i think wed evening and thur morn was the best medicine for her.

yesterday we got a package from our angels. we will get an actual thank you out shortly. cassie is going to have to dig into her new cookbook. this might be a cooking weekend.

i hope everyone has a wonderful weekend.

Wednesday, November 2, 2005 7:43 AM CST

i changed the picture to the girl's First Communion picture. i always liked it.

We had a rocky start to Halloween eve. But once we got out we made the best of it. Cassie still has some major issues over what transpired prior to trick or treating but doesn't want to talk about it. she now says she is over it and it is good because she can stay with me and not have to go anywhere. but she is not because she says she is very angry. what i do know about anger is that it stems from a horrible deep pain. i guess as long as she doesn't punch a kid at school, she is doing alright. i did notice that she wants me right by her side though. and if i get on the phone, she is there every five minutes. the fear of abandonment is great to a child.

enough for today. cassie becons.

Monday, October 31, 2005 12:14 AM CST

so everyone does not panic.

i made it through sat. fri night cassie had a friend spend the night. i thought it would be a good distraction. i was fine until about 8 pm. so i went to bed about 9:30pm. sat morning i woke up feeling blah but got thrown in the dumps fast. recouperated by packing cassie's summer clothes away. we stayed busy all day. jerry showed up in the evening.

i did blow up at cassie when i went to bed. took savannah to bed with me. cassie slept in jerry's room. jerry on the sofa. i just shut my door. and shut her out. don't know what was wrong with cassie's room?

sunday was good. we all worked. then in the evening we all watched a couple movies.

back up to NW AR for me tomorrow.

barely have time to breathe. tonight is trick or treating. just got a call from a friend of mine, so we will have company. this is a very good thing.

happy haunting.

Wednesday, October 26, 2005 7:36 PM CDT

i really don't want to write.

i was fine until a few minutes ago.

the incredible emptiness. the pit in my stomach. it is hollow. it is heavy. it is lonely. it is self consuming. i have so much to do and can't do anything. i must have anticipated this deep within me because i went crazy trying to get things done. i don't want to reach out right now. i am tired. i have begun to wonder if i now rely on drama to survive. i know i don't want it. but it keeps rearing its face and i somehow feed into it until i explode. i get so ashamed at myself for allowing it. i know sometimes i don't, but it happens, and iw onder how come i didn't prevent it. training. training to walk on eggshells. training to constantly look for danger. i was prepared long before diagnosis. do i create all this? i don't know. i guess i will think about that tomorrow.

my friend audrey wanted to take me away for a night. go to a new place, a different place, so i can get my mind off of diagnosis. remember, to date, this is by far the hardest date for me to handle. but i have Cassie. jerry will be working out of town. so we will have a sleepover instead. i HAVE to make it. but i am very scared of saturday. will that date ever have a less hold over me? how can i be a mom to cassie at this time? how? i want her with me so desperately, but will i be sharp with her? will i lash out at her? i am scared. maybe i will forget the date?

i am going out of town for the next two days. part of me can't wait to retire to an empty hotel room. all alone. where i can't hurt anyone, where i don't burden anyone, where i have to be careful of my own actions and reactions. i honestly don't think i want anyone. i want to be alone. i am tired.

i talked to cassie a couple minutes ago (yeah, life interupted and it is now 9 pm). i hear her singing church songs in bed right now. cute. but i needed to come clean. i needed to explain i am a time bomb. i don't want to take this out on her. whether i become a recluse, am sharp, or just blow my top and yell at her. she needs to know it is me not her. but at the same time does this not teach her how to walk on eggshells. hell, she learned that yrs before and i have done my best to restore the magic of childhood. one thing that did surprise me was that i asked her if she realized what time of the yr it was. she did not respond with Halloween. she responded with Diagnosis. THAT is wrong.

but this i write, is for me. i don't want to share. i don't want to talk. cassie told me to write. i laughed because i had started. she didn't like it when i said you go to bed, i will write, don't take up the whole bed when i come to bed.

i am angry and i am so sad. they bounce. i was angry this weekend. plumetted into sadness just before i started writing. found myself, wiltst taking a break from writing, getting so angry once more. it was way too easy. and it was over nothing. i killed it that time. and am back to being sad. this is just volitial.

i mean it when i say i don't want to talk. i am not doing this to get a bunch of entries. i doubt i will even check them for a while.it is time to hide within myself. what the hell would talking do anyway? time to curl up with my little one. the bed will be empty with just the two of us. i miss the days of past with the three of us in bed, giggling, complaining, fighting for room, the "go to sleep girls, now, before you sleep in your OWN bed by YOURSELVES", the snuggling, the arms and legs intwined, the feeling of little girls breaths, so soft and methodical on your neck, the sound of thumb sucking, the warmth, the peace, the love. i still have it now, but at the same time it is empty and just plain GONE!

Thursday, October 20, 2005 5:25 PM CDT

okay okay okay

i am still haunted by the previous entry, but as cassie even told me this morning, i have to learn again how to get over being hurt so deeply. today is a new day and i have to relearn how to see it that way. immense pain causes emmense anger and distrust. distrust is all what i am about right now. i trust nothing. i trust no actions, no words, no intentions. i wonder what the world intends to do to me next. i don't know what people intend to do to me. where is the next blow going to take me? one thing i have noticed, Jeanne and i seem to mirror each other a lot in our emotions. i do know i am emotionally delayed (hahaha). i don't know from her entry if she is in it as deep as i or not. but dang, it seems to keep hitting me from every angle. my only escape now is my road trips. i escape. when i am back, i keep so busy, talk to no one, and mind my own business because i don't want anybody in mine.

i tried my whole life to be a good person. i was a good wife. i am a good mother. i am a good employee. i was a good tenant, a good student, a good responsible child. when doing something bad was offered me, in general i turned away. and still felt guilty. it is a catholic thing. we feel guilty for things we don't even do. (my neighboor and i have had a lengthy discussion on that subject) i had fun growing up. i had fun as an adult. we all screw up some stuff. but i managed to escape doing really bad stuff. in fact, i have been accused of being perfect. oh how i am tired of hearing that. the whole last decade of my marriage i was told that in distaste, and now again. i am in no way perfect. and i am tired of hearing those sarcastic painful hurtful dispising remarks. i am tired of being told i am somehow hurting other people when i bend over backwards to help them. no more. that is my anger speaking. and i am tired of being a good person. because you are used as a punching bag, taken advantage of, and you have to keep taking it and keep taking it and keep taking it. and frankly, i am tired.

the point i was heading to was that i was taught ALWAYS to strive to be a better person. Mary was sinless. why couldn't i be. i tried. and my child DIED! hmmmmm. so did hers.

halloween approaches. that was always my favorite holiday. i keep getting pushed towards the festivities. MY DAUGHTER WAS DIAGNOSED THEN. we spent it in the hospital and her daddy was too freaking busy to bring her her costume so she missed the party. savannah was so hurt, she refused to even go or look at the other kids. she NEVER forgot the pain of missing halloween. and i can't either. and it is put in my face. three years ago NOW she was symptomatic. three years ago now the tumor showed itself. three years from just next week i was told my baby was going to die and medically we can't stop it. today savannah is dead. and i tried to be a good person. and i am pissed. and everybody has forgotten and puts it in my face.

i know this is to be a private site. and i do trust the majority of people that are here. but other intruders stop to be nosey or as my ex husband told me...to keep up with my activities, which he attempted to put in my face. what the F*&^ are these people doing in my business? honestly, these people are little people and do very little damage to me.

for 13 years i gave up my career for my ex. promise after promise broken to me. then i had to give my career up for savannah. i did it in a heartbeat. understand that. and i would do it again. but now i want to concentrate on it. and once again i am to set it aside for my ex? i refuse to allow him to control that part of my life again.

so yes, i am very angry.

oh, i have to brag. i hope i am not out of line here. i had my hair colored. my friend was to do it but she bailed. jerry offered. yes, my man colored my hair. it is the exact color of savannah's. orange. not bad looking. oh, savannah said my hair was red and hers was orange. she never had a problem with it so i decided not too. hers was fine and straight. mine is thick and course. but the color is an exact match. i am pleased. and it makes my heart feel better. a small gift.

cassie had a bug project to do. she had to collect them and pin them to a board. i was outside my office smoking one day, looked down, and there was a dead dragonfly. completely intact. remember our thing for dragonflies. it was a beautiful green. my favorite color. i have never seen a dead dragonfly, let alone one that appeared at my feet when we need insects. i so gently scooped it up and presented it to cassie for her board. a gift from an angel to her mommy and sister when we needed it. the prize insect was the centerpiece of her bug board.

i seem to live for conference calls now. i really thought this corporate thing i was on was just going to take a couple days. but writing policy has become much more indepth. i am even doing what i prided myself on not doing before. bring work home with me. i may work on it a bit when cassie is watching tv, but mostly when she is at her dads'. i even printed out a bunch to take to sparks this weekend (like i am going to find time). we will see.

my ezema is back. it seems to appear when i am under a great deal of stress. it appears, then i have to think about what is going on. well, hello itchy burning skin.

this weekend is to be an escape. to go into another culture. back for another bike rally. i need an escape. but i do understand it is temporary and i have to deal with my anger. does it just subside over time? most likely. it is part of grieving and this anniversary is as painful as her death. all will forget unless they read this. i will try not to say a word. but the pain will grow. i know, understand, accept, and welcome it. for that is my core.

i reached out for so long. now i want to be interverted. okay, functionally depressed (i made that up). i would really like someone to watch cassie so i can just stare at a wall for a day. but that is a luxary. i was given that once before but was abandoned in the middle. thanks! i guess i am too much to deal with.

okay...i have been having a pity party and i am the only one invited. i am angry and want to hurt people. so much for being good. what a struggle. it makes it so much harder when you are catholic because if i don't do it i am still guilty. man, i need to release some of this.

time to get happy. forget for a while and have a good time. i don't want to see a costume this weekend but i will have too. reread above.

i know this is so very selfish. but my whole life has been lived for others. i want to be taken care of now. this is not me. but i have allowed little bits over the past several months. i like it. it feels good and i need it.

Monday, October 3, 2005 6:43 PM CDT

oh, what an evening. nothing like being gut punched when you don't expect it! but that is not for here.

i have been really missing my baby as of late. i had a down time yesterday. abot 50 minutes, driving between ozark and russellville. i HATE flashbacks, but i also wouldn't trade grief in a million years. how i yearn to be with my little one. i was watching law and order a few nights ago. they were trying a woman who took her daughters life. her daughter was terminally ill and was going to go through a horiffic death. they wanted to crucify the mommy, bringing up all kinds of inconcequental stuff. it broke my heart. and it made me angry. very angry. anger only a mother who watches her child can possibly comprehend. i have been having bad dreams ever since. i have been crying again. of course, i have other stuff really adding to that, too.

it isn't the last breath flashback, it is the last look she gave me prior to her last round of siezures. oh crap, here it comes again. those eyes. those eyes. helpless eyes. and i couldn't do anything except watch her die. that is so wrong. and it was my fault. the silent tears i cry. to no one except me. there comes a point when everyone seems tired of your grief. so i keep it to myself. no one has ever voiced this. it is a me thing. i just miss my daughter. i want her back. please for five minutes. what can i give up for that? please tell me. i want to hear her voice one more time telling me she loved me, telling me that i am worth it. my baby.

-------------------------------------
please check out the added poem above

*************************************
thanks for all the nice words. still been very down. lot of crap going on to deal with. not for here. don't feel like writing. trying desperately to keep busy. fighting demons. not suceeding very well, but i am surviving. that is all it feels like. i feel i am cheating cassie because even when i am with her i am elsewhere. i yearn for the past. i feel savannah with me. so matter a fact. tells you the way it is. all bs aside. but life and wants are so much more complicated than that.

Sunday, October 2, 2005 6:05 PM CDT

HOME!

Got home Thur nite. exhausted from the long drive. i just wanted to climb into bed but i had some surprise visitors. had planned on updating then.

Fri picked Cassie up and off we headed for Bikes, Blues, and Barbeque. Cassie's first rally. we rode in the parade. guestimate of over two miles worth of bikes. i told cassie to start waving at all the people waving at us from the street. the little kids loved it. cassie was behind Jerry. i rode behind one of jerry's friends (twas nice). Jerry's best friend hadn't made it in yet from OK. but i would have been uncomfortable on the back of the Buell. didn't really care for it the first time.

that evening we all went to hear Foghat and Blue Oyster Cult. I saw them together a few yrs ago in Detroit. They rocked. while we waited in the parking lot, Cassie kept wanting to ride all over. she kept swapping bikes. when at rest she was all over jerry's trying to figure out the controls. way too comfortable on a bike if you ask my opinion.

our knight in shining armour (okay an old gray fart with braided hair on a harley) about took out an idiot driver for us. this car cut cassie and i off twice within a half a mile. she and i were quite freaked. we figured this person was trying to start something with us. anyway, at a red light, jerry comes flying around us to the car that kept cutting us off. he tried to get this persons attention, to no avail until he kicks the door (an attention getter, not a dent causer). some guy on a cell phone clueless of what he repeatedly kept doing. jerry in his perfect biker stance tells the guy in perfect biker language to get off the %^%#$$#%^%&&%%((^ cell phone and drive and quit cutting the vehicle off behind you. the light turned green. jerry continues and the car remains. i tell cassie...this guy in front won't stop messing with us. finally after a full light he goes. apparently, jerry scared the sh*& out of him. i can only imagine having my car door kicked, turn and see a very pissed off biker, with his hair in braids, so you obviously know that HE doesn't give a *&^, telling you to drive safely. cassie and i were cheering when the guy finally turned off the street. my heart rate finally started to slow at this time.

then the two of us were quite entertained (we both have very warped senses of humor) by some nasty thing on the back of a crotch rocket. you can only imagine, but the two of us laughed the rest of the way back. it was a sick humor, i know, but it did relieve the fear and hightened anxiety level from the driver previous.

we had a lot of together time. the boys went to Dickson St for a night at the clubs. i stayed with Cassie. i wish i could have gone dancing, but it was worth having cassie with us so me not going. if that makes any sense.

good night. cassie has prepared a large pallet on the floor for the three of us to lay down and watch a movie for tonight. jerry is making cookies. and i am being summoned to join them. can't ask for a better conclusion to a good weekend.

Monday, September 26, 2005 3:57 AM CDT

Today I head south for the week. I felt like i was playing dressup this weekend, trying on my suits and clothes to wear to Corporate. I even got out makeup. it is funny. i used to never go to work without makeup until savannah got sick. and more and more i went without. turned 40 and basically stopped wearing makeup all together.except on occasion, i haven't worn makeup in over a year.

i finally got the transportation thing to school figured out for the week while i am gone. FINALLY. I couldn't get Cassie's sleeping arrangements done until the transportation was finished. as of 7pm, all is done.

i even got a short bike ride last night. cassie was across the street for little Lawson's birthday, so we took advantage of the time and rode. we planned on going earlier between the bands from Rita. But that got squashed from a phone call from Cassie who was absolutely miserable at her father's house. she was crying. i can't figure out why i have no problem with her at home, and no one else seems to have a problem with her except her stepmom. i guess Cassie reminds her of me. cassie says she is constantly cutting me down and making fun of me. cassie tells her to stop, thus fueling the fire. And why should Cassie have ANY respect for someone like that? She is so frustrated with her life she has to let it out somewhere, so she choses a child. easy prey. at least cassie is with people who act like adults here. enough of that. i could go on with the stories i am told.

last weekend Cassie and I did something very very girly...we colored our hair. first time ever. Nobody noticed mine, much much lighter red. cassie's was darker and her blond turned red (hers is a wash out color). Cassie was mortified because her bitter arch enemy at school told her she was HOT.

hope everyone made it through the hurricanes. have a wonderful week.

Thursday, September 22, 2005 6:23 AM CDT

it has been crazy crazy crazy.

today i go to NW AR. i will be there for a couple of days. i will write more on that this weekend.

mon i go to Monroe. time to dig out my more corporate style clothes.

cassie is going to stay with some of my friends. she is really looking forward to it.

been having a heluva time with the transportation issue to Cassie's school. this weekend we really have to sit down and see if a life change is necessary in order to keep her there.

time to go.

Sunday, September 18, 2005 6:40 AM CDT

cassie's echo was fine. no thickening anywhere. i was getting quite worried because the echo was taking so long. i kept wondering if the tech saw something. i wanted to ask, but i know that even if she did see something, she couldn't tell me. i made cassie bring along ALL her school work. she finished it all before we got home that afternoon. we were wasted. i went to bed at 8:30pm exhausted and made her go with me. emotional and mental exhaustion wears a body out more than physical.

going to childrens...sigh. we went in a different way. wanted to escape when we were finished, but cassie wanted to eat in the cafeteria. i tried to offer other places, but no, she was determined. 'okay'. we walk into the cafeteria and the first person i see is dr becton. i turned not just my face but my whole body. i had to completely avoid him. what a pitiful woman i have become. then something else happened that i am so ashamed at. upon leaving, a woman stopped me and asked to see my tattoo. she asked if it was cassie. no, it was my other daughter. i couldn't believe the word 'was' came out of my mouth. oh God forgive me! one of those moments i will regret for the rest of my life.

when leaving i asked cassie if her daddy was going to call. she said no, she was to call him with the results. do you want to call him? no. if he doesn't bother to check on me or come, i am not going to bother calling him. now a few weeks ago i would have made her. but i decided that was between her and her father so i didn't make her. i asked her if she wanted to call jerry. again no, he said for us to call after work. honestly, i think she may have felt a little abandoned by the men in her life. but jerry did call to check on her while we were in route home. cassie finally did talk to her dad yesterday evening.

back to the heart thing. they still want an echo every five years. in case something shows up. i can deal with this. i have to.

now, onto work. i go to Monroe, LA not STL. i will write later on that.

Friday, September 16, 2005 7:04 AM CDT

Today I have to take Cassie to Children’s hospital. She has her five year cardiology checkup to make sure she doesn’t have what her father has. She and savannah have always tested negative, but the words still ring in my ear…this is a dominant gene. However, they did say that if the girls didn’t have it by toddlerhood, they wouldn’t ever have it. Yeah, but it still scares the crap out of me. Remember they told us; let’s just give savannah a MRI, just to rule out the bad stuff. She doesn’t exhibit signs of a brain tumor. And she is now dead. So, where does that put me?

And the second reason I am freaking, is having to return to Children’s hospital. Actually, I fear that as much as the above. Now is that selfish or what? But I do recognize it and call it as it is. My own worst critic? Yup. I will drive all around Little Rock in order to avoid seeing the hospital. And now I have to see it, park, enter the building, sit and wait for good news or bad. I go by myself. Her father forgot. It was on his calendar. Cassie reminded him, but now he has a meeting scheduled. Surprise!

Lisa C did tell me she would try to get off work to come with us. She was at Children’s hospital the morning after savannah was admitted and never left my side. I told her thank you but no. I am terrified. I have wanted to write about it, but just couldn’t. I tried to write. I would log in and then no keys would get hit. Blank screen until I xed out. I am a big girl and will face it as a lone adult. I did almost everything else with savannah.

Even jerry said call me tonight and let me know. Not call me when you leave the hospital. Tonight after work. Ow, that hurt. I am sure he in no way meant it that way. But I am sensitive now. I opened up only to Lisa, my fears. She was there for the birth of my children, the death of my daughter, every monumental event. Bless that woman. The sanest person in the world. I am tired of the drama in my life.

Tuesday, September 13, 2005 4:25 PM CDT

don't know how i went an entire week without updating.

first, i would like to thank m and k for their wonderful messages on and off this site. i am glad what i could share with you was your missing piece. it is very heart felt and heart warming.

second, i have now gone through the entire journal history. i have no problem with anything that is there. if someone would like to use it against me, so be it. it will end up on their conscious. but i doubt they have one. it took an entire week for me to make it through. everytime, i shed tears except the one night i did it with company here.

third, i and sometimes we, have been working on Cassie's room. the border is finally all gone. the glue is a booger bear. i am going to use a disolving agent on it tonight. cassie loves the furniture being moved around. next, figure out a way to repair the wall/paint beneath the postborder. then we can begin to paint the ocean. still am unsure about the dark blue for the ceiling, but it is Cassie's room. she is old enough, and i think it is important for her to pick out, design, and help decorate. it is a bonding to the work and develops pride instead of me just handing stuff to her. yes, i do make her work for what she wants.

looks like i will be sent to the STL area to be on some kind of board on telephony circuits. i suppose my eight year backround in that specialty area caused that. that is fine, but i am in the middle of another massive project that i have until yr end to complete. everyone seems to be freaking about that deadline except me. i just do field work a couple days a week and then three days transcribe it to the format wanted. now, more to add. i may have to join the bandwagon in freaking out if more is added.

today has been a very very good day. i needed one finally. we drove through beautiful country. just breath taking. in the mountains and the mulberry river valley. no cell phone signals here.

oh, i do like the lyrics. thank you 'friend'. they made me smile. is there a name to the group?

time to get to work upstairs.

Tuesday, September 6, 2005 6:44 PM CDT

have been going thru my past journal entries tonight. looking for ammunition against me. stil can't find any though. but i was remembering savannah's MAW trip. that was when the statue of Sadam was being pulled down. savannah wouldn't allow us to go to a theme park that moment because George W Bush was protecting children. And she was goning to watch it. that whole morning she would watch in silence slowly eating piece of bacon after piece of bacon. then, out of the blue, she would go into a disertation about why George Bush was like God. This mommy freaked but let her talk. He was protecting the children. 'I know', she said. 'Some may die, but we still must always protect the kids.' all i could think to say then and all i could think to say now is...damn...that is profound. i am living that now and it is a bitch. to hell with us adults. we made our beds. it is the innocent which must be protected. i am letting those words of hers ring through my ears.

i watch. i watch my daughter closely. always have. she should have had her allergy shot Mon. guess what...closed. then today...guess what, didn't get back from school until 4:45...too late. do you know that a week after we got bak from HI, she started to suck her thumb again? it hurts me. but it also tells me something because she had a marvelous time. i stop her everytime i see her, but i also see her doing it in her sleep. so therefore, it is also not consious. who else would bother to watch this?

i have to share something funny. cassie has always dispised shoes. since she was born. booties were GONE! sunday she stubs her toes 3 times in the house...cries and whines. then here she comes to mommy for sympathy. and poor cassie, mommy is not the sympathy type of person if you allow it to happen. honey, you know how to stop it? No...whine whine whine. it is called shoes. you have plenty of them in the closet. put a pair on. but they ALL (whine whine whine) hurt. but honey, you told me they fit. 'they do...but(whine)!' did shoes other than flip flops cover her feet. noooooooo. but i never heard another peep if she stubbed her feet again or not. it will probably be another full month before she puts on real shoes.

sorry...call from a friend who just lost his wife.ainful, but good. gotta get to cassie. she wants to have one on one. good evening and may the gods smile on you tonight.

Sunday, September 4, 2005 9:53 PM CDT

Mon pm
Jerry and I have been working on the upstairs room ALL day. the window treatments caused some high blood pressure, but other than that, just sweat. it is coming along. i could not get cassie away from across the street. i think she is babysitting their grandson. she is such the protective little mama. i think they did tons of arts and crafts, but were outside most of the day. cause i watched them from out the window. this afternoon she made (i watched and did what she told me to do) sauteed shrimp and peppers in garlic and angel hair pasta with a herbs and olive oil. it was yummy.

she is finally out of the shower and i promised her a game of cards before bedtime. another week to come and we both miss Jerry already. it's just not the same playing without him.
---------------------------------------

what a week!

had plans to go to OK for the holiday weekend. we cancelled at the last minute due to inadvertantly having Cassie. however, we have had a wonderful time together working and playing. we did housework and jerry did the outside stuff. poor cassie...mom, you always make me work. oh well. we hung out with out neighbors. cassie can't get enough of them. she and i made dinner for Jerry's aunt and uncle this afternoon. and jerry and his friend got out my desk. yippee! i have been wanting that gone for sooooo long. now, i can get to work on that room.

i have been thinking a lot lately about those comments. i had mentioned it to a couple people in the beginning of last week that i halfway think this person personally knows me. i should be able to have that person tracked through the ip address left behind.

but for the rest of the weekend, i won't let it bother me.

Tuesday, August 30, 2005 5:25 PM CDT

Thur
when our journey began i was a very uptight prude. with a little bit of openness. for those who remember, i lived in europe for a bit. the europeans have no problem with nudity. because i grew up surrounded by it, it never bothered me. so i went to a bike rally. whoopy do. i haven't looked at the pics myself. saw some nudity, not much actually.

what gets me is that i had, in no way, intended on offending anyone. i have been asked repeatedly on and off the record about Jerry. here he was donned in braids. give it a couple yrs and it will be the in thing. and remember last yr when i braided his hair for Bikes, Blues, and BBQ in Fayetteville he was asked to ride in the front of the parade. Discovery channel did a special on it, and he is recognized to this day. so for those who didn't see the special on tv, i thought you could see a picture. so what if it is not your thing. that's okay.

now i am much more layed back. in my job and my home life, i have been told that i handle BS incredibly well. maybe so. but i have put it into perspective. will save a child's life? will it bring comfort to another individual? will it really matter in a yr?

the guestbook entries have given me chuckles when i have needed them. there is much fear and sadness in my life right now. and this is not the place to write about it. i have actually been checking the guestbook entries frequently. i am humbled by those who come to protect me. i do thank you. just goes to show that we are still surrounded by angels.

now i am expecting company and must go.
a thank you to this inbicile for bringing me out of a slump tonight. a bundle lying on the floor bawling and drooling in a freakn' ball. a pitiful sight of grief. on a whim i called my sister and wanted to read to her an entry and saw yours. my tears were replaced with laughter. thank YOU! and it is all about me...hell yes! why do you think you are coming here. my daughter is dead. it is all about me. it is about my grief. my mourning. my loss. it is about one story of survival of a parent who lost their daughter at the tender age of seven. and of a parent who MUST survive in order to raise her other child. God knows I would love to crawl into a cave and not return, BUT. IF, just IF you really cared enough...then you would know that children do not begin to truly grieve until two to five years AFTER the death of a sibling. Just about the time i return to normalcy. RESEARCH AND STUDY. it shows incompitancy at your end, not mine.

Sunday, August 28, 2005 7:04 PM CDT

Mon am
i have been thinking...dangerous at times.

the entries most likely came from one person. she is scared i am going to send stuff to her computer. yet, she just put every picture she viewed on her harddrive. they are not even on my hard drive! because, i never bothered to look at them.

i think it is funny how this narrow mindedness thinks. A...Cassie printed the picture of Jerry. B...the web site shows some breasts. C...Cassie viewed everything. now lets do math. somehow A=C in this persons mind. whatever!


i deleted her trash. plus this person said they are not going to come back. then don't. don't come back and write another entry under another name.

honestly, it makes me laugh. i should know better than to open myself up for that. i just LOVED the pic of Jerry with his hair braided and wanted to share.

and i would really like to know specifically, what i have done that is wrong, how it is wrong, and back it up. and how am i a bad mother. i want specifics. because maybe i can change something to become a better parent. i do not mind constructive criticism. however, it will get quiet now because they cannot back it up.

gotta take cassie to the bus stop now.
-------------------------------------

boy, this has been busy.

ya'll are disgusting. i am proud that my angel has his picture on a website while at a bike rally and some flip. i haven't stopped laughing. i haven't even finished reading them all.

did you see me in any of those pictures? did you look? keep on looking. get a grip. this is a different culture. i was given the priveledge of viewing. i will not judge. i never met a stranger at this rally. everyone was nice. no body had the look on their face that looked down upon me because i have my daughter inked on my arm. not one. i get that in the real world. personally, i find that entertaining. and to be accepted, no questions asked, is a pretty amazing thing. don't you think? i am probably to the point in my life, to partially quote Eminem...I just don't give a F#$Back off. there is absolutely nothing wrong with the picture of Jerry on his bike, concentrating on the slow ride that he was in. it gives me goosebumps. and yes, cassie has seen it. she printed it out to give to him for his birthday. this in no way makes me a bad mother. she wasn't there.

i am still cracking up. this has NEVER been the puritanical site. go elsewhere for that. i have tried hard to be real. to open and allow entrance into how to continue on after. just one example. this is what i yearned for. someone who was real. someone who could scream, someone who could show me a release, someone who wouldn't pass judgment blankly because the pendulum swung one way it must be dealt with by swinging the other, one who was honest. honesty has always been of utmost importance to me.

keep having fun. i need to go back and read ann and mark. i bet carol calls laughing.

one more thing. it didn't do anything for me. are these nameless people trying to tell the rest of us something?

Thursday, August 25, 2005 7:02 AM CDT

Tues

A busy but melancholy day. Ozark AR took all afternoon. At least I was listening to Dido and Evanescence. We finally got RAIN. Power got knocked out three times. At least I had been hitting save quite often, so I didn’t lose anything. I have one more full day of office work, and then I am heading out in the field for a couple days. Headed west. I will bring company this time. Phase II of another big project.

I was so wiped out from looking at the computer that I actually went home during lunch…and IRONED.

I framed the new pic of Jerry from Sparks. It is on ridingfree.com. Then to pictureman. Then to sparks 2005. Then to page ten. I really do like his hair like that, all braided. Remember it took me an entire night to do his whole head. No pics of me this year. Only go there if above 21 please. We did make Sparks 2004 pics, though.

Wed

I started my career in telephony a week after another college grad. He moved on to run his family phone company almost ten yrs ago. He and his wife lost their 9 ½ yr old daughter last week in a traffic accident. Their 15 yr old son was driving her to piano lessons when he slid on some gravel, lost control of the truck, and flipped it several times. She was ejected even though seat belts were in use. He is not in very good shape. It is very painful for me because Cassie is 10 ½ and I cannot fathom losing her. I actually do think about it every time I drive, every time we board a plane, every time we go swimming, every time this and every time that. I have always been this way. I hurt so much for their family. Her funeral is today. Please pray for their family. The son who was driving was one of the first newborns I ever held in my life. I remember the baby shower.

Five weeks left of my Presidency in Kiwanis. The Installation banquet is my final duty and it is almost completely done. All our major committees are now chaired. And we have sponsors for out Key Clubs and Builders Clubs. What a productive year. I wonder if it looks that way to a general member? Or if it is just something that I see because I am in the midst of everything?

Tuesday, August 23, 2005 6:55 AM CDT

Cassie accidentally spilled the beans. We took him on a nostalgic train ride on A&M Railroad. It went from Ft. Smith depot to Winslow and back. We had packed a bunch of smoked meats, a block of sharp cheddar, bbq sauce, and other snacks. We ended up getting quite an upgrade. We were supposed to be on a nonairconditioned car, the Biloxi Blues. Actually, that is the train car part of the movie was filmed in. But the railroad happened to have a fundraiser the night before, so their deluxe dining car was out. We got to ride on it in the AC. Now, poor Jerry is in public in shorts and didn’t have to be. He got over it. He has cute legs anyway. We went through Van Buren and up into the Boston Mtns, over some tressles, and through a tunnel. It was nice. We got wonderful commentary. Coach and First Class all shared a car. First Class was just told to go to the far end. I could deal with that. It was Cassie’s first train ride.

Cassie had done soooooo good about not telling. Jerry kept trying to get her to tell him. He was opening all his presents. She was putting all the bows she had made that were on the presents on him. Like around his neck, on his head, around his wrists. She took pictures. I won’t put them here for his sake. Then she says you ought to keep them on all day. What will the people on the train think? (loosely paraphrased)

The ride took 1 ½ hrs longer than expected. We got home at 8pm. So now to the ten yr old gourmet chef. She decided on sautéed shrimp. She really started going crazy with ingredients and I said there was NO time and we don’t have time to go to the store. You use what is in the house. I asked if rice was okay. Yup. She now wanted to do the Rachael Ray thing, dinner in 30 minutes or less. I put on the minute rice. We pulled the tails off the shrimp. She puts them in the evo oil and sprinkles garlic on them. While they are lightly sautéing, she gets out red pepper salad and banana peppers and dices them. She puts the shrimp on the rice and puts the pepper mixture in the leftover juices/oil in the wok. Now I start washing dishes and she is drying and putting them away. She sprinkles this mixture over the shrimp. Voila. Just at twenty minutes. And in twenty five minutes all the dishes from cooking were done. I did eat a shrimp. It was divine. Cassie was so excited she e-mailed Rachael Ray from Food Network to tell her. My kid, Cassie  She made Jerry’s birthday very very special.

Sunday, August 21, 2005 9:08 AM CDT

i started to write several times this week and just hit delete.

today is jerry's birthday. cassie and i have a big surprise for him. i will update later on the events of the day. last week we spent an entire evening wrapping up his presents. she got so into it. 'let's get pictures of this, and make wrapping paper of it'. so she did. every item was wrapped individually and wrapped very different. even the card (cards) she made were very different. she made cookies yesterday and packed them up in lieu of cake for today. we decided cookies travelled better. where we are going will be hot!

this weekend was Valley Fest. friday i went down for a sponsors/volunteers lunch. i thought i was going to get sick under the tent. i signed up to drive the shuttle bus. i had a reason behind this. the shuttle is airconditioned, the ticket booths are not. because cassie was going to be with me, i only signed up for an hour. jerry was sch to work, so she had to remain with me. but he ended up coming home sat morning, so he got drug along. we drove for over an hour, then he took her on rides while i continued. we were short on drivers.

cassie hit the rock climbing area. she is good. she is really good. the guys running it told Jerry that she is better than 90% of the boys that try it. everytime you make it to the top and ring the bell, you get to go again up another side. she actually made it 2/3 of the way up the slanted out wall. she kept doing this until her muscles were giving out, and she still didn't have the sense to stop. i guess if a kid loves something, they don't realize their body is telling them to stop. her hands were all roughed up, even though she religiously coated them in powder prior to every climb. then for a change she put on climbing shoes. to watch her dangle by two hands, her feet swinging to feel for a foot hold was awesome. we only paid for two climbs and yet she spent most of the evening there.

well, jerry and cassie took the motorcycle home (all of five minutes away) and i went back to the bus for another round. i think we all had fun. it actually wasn't near as hot as i thought it would be. they didn't have a big headliner this year. i was disappointed, but OH WELL. there also wasn't much of a crowd either. i think this is the last year i get cassie an arm band to ride the rides. they are all baby rides. she is growing up and has out grown them all.

cassie told us she wanted to take the motorcycle down. she has had NO interest to ride since last fall. it was so cute, she puts her socks and shoes on, then goes and puts on a vest. she must think that is proper bike attire. well, jerry does ride with his demin vest. in fact, they just left again. i still think she looks so natural. kinda scares me. she places her hands on jerry's shoulders going down the driveway and then shifts them to his waist as they turn on the street. what a wonderful sight.

oh, i forgot to mention last week, i tried a bottle of white grape/apple/cherry wine. oh, it was very very good. don't have good story to share other than sit back, relax, and talk to jerry. i think he enjoyed it more than me. a good bottle of wine shared with good company always makes for a wonderful evening. thanks to Mark and Kate.

i guess it is obvious the bike is out of the shop. it is repainted (looks eggplant to me)candy apple black cherry. the dyna glide now has a springer front end. it is sharp looking. the only one built like this in the state. it rides much more smooth. a bit more high pitched vibration. and a lot easier on my rear end.

off to the celebration. remember it is a secret. all he knows is it will be hot, last until 5, and we are taking lunch. start guessing:)

Monday, August 15, 2005 7:30 AM CDT

what a busy busy week.

i got Cassie registered for school on Monday. Tuesday I took Cassie up to Fayetteville to see Jerry. His bike was in the shop waiting on parts for a few weeks. His truck was having bad overheating problems and he was stranded for the most part. Cassie was beside herself to go see him. We went uniform shopping. Even made sure they had a Target there. We get there and no uniforms. the girl told me they sold out already. even though i just got a coupon in the mail. the more i talked to her, the more i realized she was just lying to me. i did find a couple pair of pants that will work. If we weren't so pressed for time, i wouldn't have bought them. in fact, i was so mad, i told Cassie we were not going to get school supplies there. she tells Jerry, we are leaving, mommy is mad and won't give Target any of her money. (I went to Walmart this morning).

Wed Lisa C. came over. Also got a nasty letter from a new neighbor. everyone on the block did. we just are not neighborly. there is a lot of 'stuff' going on with the people on our block. i was going to blow it off, but Lisa said i needed to write them back. i did the next day. a brief overview of all the nieghbors, sharing only a tidbit of info that almost everyone knows. i am so careful not to spread dirt or personal stuff. i didn't even tell them about savannah. if they didn't figure it out, they are retarded. i got bashed for not picking up my trashcan for a few days after trash pickup. that is very true. every weekend i go somewhere i leave from work, so the trashcan is picked up upon my return sun or mon. and i was leaving again on fri AM for our MO/ARK district convention. oh well.

Thur Cassie and i were signed up to take tickets at the Cal Ripkin World Series (10 yr olds). we rushed to get there. it was 100 degrees. got there and they didn't need us. my first reaction was to be pissed off. an hour wasted. then i thought...what a blessing. we got 'stuff' to do at home...in the AC! anyway, it ended up we hung out at the nieghbors (not the letter writers) until 10:30. fri came too quickly. off to the convention.

the convention was cool. jerry came down. he was so bored but he was a trooper. our club was in charge of the hospitality room. i was very honored. i got to pass the 'governors' banner to another club. i picked up a couple banner patches for recognition. i made Alvin (our immediate past president) receive the distinguished club stuff. i was very proud of him because it was his year. i liked being able to walk around and district officers say hi to me by name.

but sigh, i am still in the dumps. i don't think it is my birthday tomorrow. even though i really don't want to bother. i want to crawl in a corner.

this is the kicker. i get this call from cassie's dad. he forgot to pick her up from daycare. then he proceeds to tell me it wasn't his week. we had changed. i was unaware of this. this was the one weekend i couldn't change if i wanted too. honestly, he is soooooo forgetful. he is not one to admit guilt, so it is my fault. oh well.

Tuesday, August 9, 2005 7:31 AM CDT

I looked at the pics of savannah in the hospital bed. It rushed me. I watched it replay and the tears have started. Her little body swelled from the steroids gasping for air. She struggled so hard to breathe. I remember when her lungs filled up. I heard it. She still tried to breathe and there was no room in her lungs. She tried. She tried. She died. Her heart stopped. Aaaaaaaaaaagggghhhhhh. I wish it was me. I always wished it was me.

I put Leah’s pic on my angel board at my office first thing yesterday. I had it cut out in my drawer for a while. I couldn’t add it until she was with all my other kids. It hurt. Okay and when does it not hurt? Except, in this pain, I find a peace. Sick, huh. This is the first time I have cried since I made this board. See, it has helped. But I was never fool enough to think I am done crying. I have a lifetime to fill with tears.

I knew my anxiety has been building. I had to fight panic attacks driving home from STL. I couldn’t breathe. I am ultra sensitive to my body. A nut case. I turn 41 in seven days. And I feel like crap. I feel like I am falling and I have nothing to grasp on to stop. I don’t mind getting older. It is not that. I just feel that there is no reason to celebrate. I didn’t throw myself a party last year either. During savannah’s illness, I did. I lived life. I made sure we all did. Sometimes now I wonder what the point is. Just keep my chin up for Cassie. My child is my strength.

Monday, August 8, 2005 4:23 PM CDT

The weekend is over. I went to STL. It was Eric and Elke’s birthday and they had a gathering on Sat evening. Several of the usual crowd from college were in attendance. Always wonderful to hang with the old crowd. You can tell we are getting up there in decades. I crashed at 11:30pm and only one other couple was left. Most everyone else left between 9:30-10:30. My, that was when we used to just start.

Fri night I went to Donna’s. it was a rough drive. Tons of bad rain and then night time paving. Took almost 8 ½ hrs instead of the 6 ½ hrs. I actually slept in until 9:45 in the am. Don’t know what was up with that. I never sleep late. A couple other grade school girlfriends came over and we all hung out until it was time for Donna to go to the Muny Opera. I do miss going there in the summer, but alas, I already had obligations. And I wouldn’t have missed it!

Jerry called me and told me we were in Thunder Road magazine. Pics from Sparks. Him with his hair braided and beaded and me donning paint. I am surprised the photographer got those printed. They even mention us by name. well, I just really don’t know what else to say about that, other than, nice pictures.

Cassie and I are supposed to go school supply shopping tonight. Maybe we can go to Conway and go uniform shopping tomorrow evening. Not sure if I am ready for the ‘back to school’ thing, yet.

I am starting to gather the stuff I am going to take to the MO/ARK district convention this weekend. The convention this yr is sponsored by our Division. That means our clubs have to run it. I should have my stuff under control. Other than a short delegation meeting and an awards breakfast, I will stay in the hospitality room and tend to it. I do have some help.

Friday, August 5, 2005 6:58 AM CDT

HAPPY BIRTHDAY CAROL!!!
41 :)
visit her and send happy wishes at tx/sydney

This may be the last installment for Hawaii.

The travels to the southern most state in the nation.

Kiwanis International uses a travel agency called Incontra. You go through them and they take care of everything. Cassie and I were coming from Little Rock and Susan was coming from St. Louis. Before doing anything I inquired if they could also handle our travels to the big island. They would be happy, too. I told them the hotel we wanted to stay at. They told me to go to a Sheraton. We don’t want to go to a Sheraton; we want to go to the Hilton. Well, they can’t help us then. Can you schedule our flight and get us a vehicle. No, you are on your own if you don’t use a Sheraton. Well, I personally never heard of that. She said to make my arrangements on my own and let them know. They would schedule our return flight from Oahu around it. Are there and dates or times we need to abide by. ‘No’. Okay, I will give you plenty of time. So I went to my travel agent here in town. No problem. It was done in an hour. We were going to the big island. All that got faxed to the other travel agent. I called to verify and to check that everything could be worked out. Oh, yeah. No problem.

Then the waiting game. I call and bug them a couple times a week. We hadn’t heard anything and time was coming up quick. One week to go. Finally! And lo and behold, they have us leaving Oahu 2 hours before we arrive there from the other island. Immediately I am on the phone. Well, they just can’t help me. They have a package with American. Airlines and that is the only flight we can be on. Whoa. I have talked to you, I have talked to the other agent there, and you have records that I called until you were probably sick of hearing from me. Yes, I know, she said. We just can’t help you. American airlines would have contacted you to tell you that wouldn’t work. They always do. Well, they didn’t. Why would they anyway, YOU are the agency I am employing. You subbed to American, so you are the responsible party. Well, you just have to change your other tickets. What! We could have made these other arrangements around you but were told not to. You could have told us in May when the other tickets were booked, but you wait until one week before we leave and I have to find your error. I asked her, how MANY times do you show I called to check on this package. It is in your records, look. Many times, Lisa. But we just can’t do anything.

So back to MY local travel agent. She changed the tickets immediately and at no extra cost.

That was the first problem. Prior to booking, I said we all wanted to travel together. If I book this myself we can meet up and sit together. Can you do this if we get your package? Absolutely. And that way you don’t have to worry about anything. Well, heck, to go through Incontra cost us a heck of a lot more then if I would have done everything on my own. When we meet up in Dallas, we find that we are on the same flight, but NOWHERE near each other. So we compare all of our other tickets. None of them are close to each other. What was the point of traveling together when we wouldn’t actually see each other? The three of us were ‘pissed’ after everything else. I figure, we can try to change our seats. But NO, every flight going over there has a problem. So there was never time to attempt a change. Welcome to American airlines. I guess, I had gotten spoiled flying Delta.

The saga continues. We arrive in Honolulu in the middle of the night and are greeted…but what? Not enough leis. Cassie gets a crappy looking lei, but at least she got one. Neither Susan nor I get leid. Now I am really pissed. Getting leid at the airport was a very big deal to us. We talked about it several times. It is like the …you are now in Hawaii, thing… and we are screwed, not leid, just screwed. This was a listed part of the tour we paid out the ying yang for, a flower lie greeting. I was sharing the story on the tour bus the next day. Getting me leid was offered if he wasn’t married. I thanked him for his kind thought. At least he made me laugh. But I really do try to be all proper in my Kiwanis persona.

This travel agency was a joke. And never will I use them again.

Oh, on the way home, we were able to change our seats, no problem. So what would have been the problem to get us seats to begin with? We asked and they said it would be no problem. I said hopefully we have all the bullsh*& Incontra caused behind us, and it cleared the way for an otherwise perfect vacation.

Looking back…I would call and ask for the specifics. They would never give them to me. We are putting the package in the mail. Or yes, we have you booked to travel together, leading us to believe that we were. The ONE thing I cannot stand is to be lied to or misled. That has always been the one thing I hate. Needless to say, they will never get my business again. Part of me is actually ashamed that Kiwanis uses them.

Sunday, July 31, 2005 5:29 PM CDT

The reporter, Amy.

Back to vacation. Right after we arrived we went on a planned excursion, the three of us. Waiting to get on the bus, a woman introduces herself and asks if she can join us. Of course. Her name is Amy. She asks if she can take pictures of Cassie, she is from Kiwanis International. Of course, I tell her. She has kids and is away from them. I understand this. I do the same thing. When I am away from mine, I latch on to other people’s kids. It is a mommy thing. Towards the end of the tour, we have been talking; she asks if she can write an article on Cassie. Uh?

Sure. Well, it is in the Tues addition of the Kiwanis international newsletter distributed at the convention. Cassie asked if she is famous. I told her if people recognize her. They did...at the convention center...on the buses...at the hotels.

More later...crap to deal with!
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Tuesday

Cassie is talking Amy’s ear off. Amy seems to be enjoying the company. And it gave me time with Susan.

I grabbed a handful of the newspapers, 55 actually. I felt like I was stealing a box of them. I got over it. It was my child in a publication that people from around the world could read (if they read English). Plus it gave my club recognition. I don’t know why she put a picture of me in there. I am wearing a dew rag, my tat showing, and black nail polish. (hahahaha, a new breed of president). Maybe Kiwanis isn’t just for old men anymore. They made my suitcase heavy.

Upon returning, there is an email waiting for me. Amy said Kiwanis international is interested in the full story with more pictures for their almost monthly publication which gets sent out world wide or for their on line magazine which is in development. I admit, I was very excited, for Cassie, my club, and me, too. I said, of course. Now we wait and see if the article makes the cut for publication.

It was absolutely wonderful to spend the week with my cousin. Every summer she would visit us for a week and I would go to her house for a week. We lived on opposite ends of St. Louis, and as kids it seemed forever to get there, and a huge deal to visit. Today these commutes seem daily for this or that. Now granted, we didn’t go *boy shopping* (never found any, still don’t know why we called it that. did we ever even look?) or turn in glass bottles for money to go to the movies. We did other stuff, shopped for souvenirs (coffee for me), key chains for Susan, and pearls for Cassie.

Cassie and Susan were great together. What I noticed, even if Cassie got in trouble from Susan, she never held on to it. She was right back to the happy Cassie with Susan. Cassie holds on to her getting mad when she gets in trouble.


My head is about spinning with all the stuff going on right now. Kiwanis (helping someone move, a death, MO/AR district convention, Valleyfest, Cal Ripkin World Series), stuff going on with Cassie (everything is fine with she and I), my friends (when it rains it pours). I will always be there for a friend. I will listen. If they ask for an opinion, I will give mine. Otherwise, I am just there to listen.

************i got another email. as of today it is writen in kiwanis.org online magazine. it is wonderful.*****************

Thursday, July 28, 2005 12:12 AM CDT

Happy Birthday Mom!

Cassie has flown several times in her life. She even got bumped up to first class one time. She went all by herself (Savannah and I in coach) and LOVED it. But this was the first time she started to pay attention to the planes. She said they need double decker planes like buses. I told her they existed. When we got to a bigger airport, I pointed one out to her. Then she started to point them out to me. I told her most are used for transcontinental flights. I knew what would come in a couple days. It did. Mom? Do you want to go somewhere really really far away on vacation one year? Of course. Where? I want to go back to Italy (I was there as a child). She continues, I was thinking Australia. And Rome, too. I knew it was the 747s on the brain. So, I tell her, chances are we wouldn't fly on the double decker planes. That’s alright; I want to fly first class the whole way! She is obsessed with first class. They have cool lights, real food, drinks before you take off, big seats, pillows and blankets...you know, first class. I told her we would be lucky to save enough just to go there, but we have our lifetime.

Leaving Oahu, we had several soldiers with us. I guess, they have to fly standby, so they were the last to board the plane. Upon entering the cabin, everyone starts clapping. Then the stewardesses come back and start getting the soldiers. The pilot finally gets on and tells us that many of the first class passengers are giving up their seats for the soldiers. I am mush. I really really did hold back tears. There was an officer, too, but he told the stewardess, no. all my men go first. Cassie thought that was way cool. About 8 of the 11 got to go up front. On the flight from LAX to DFW, we were down to 6. Now this is the sad part. In California, NO ONE gave up their seat. Not one. Shame on you, CA! We were on a 767, big. I hope TX was a little more supportive of our troops.

Saturday, Cassie and are going to hang out with Kaelei, Holli, and Jennifer McDonald. I haven't seen Kaelei and Jennifer since Savannah was doing chemo and Kaelei had an MRI. Check out their caringbridge site. You all can figure out how to get there from here.

And to the Cook's. I am so very sorry. I think about you all the time. I am glad you got to get away afterwards. It hurts. It looks like I get to see Bryan on the 17th. I will send a big hug with him for you. That husband of yours is a very lucky man. The good thing is, he knows it :)

Monday, July 25, 2005 12:53 AM CDT

Pearls

Cassie spied those pick an oyster places that guaranteed a pearl. I told her if that is what she wanted to spend her money on, she can. So she did. Her first was a beautiful large pink pearl. She wanted it mounted, but I told her she had to use her own money. She struggled with that and was doing all kinds of math in her head. She told the lady that she wanted a loose pearl to take home. So they struck a deal. If Cassie get her first one mounted, she will give her another oyster to open free of charge. Sold. Then to pick the mounting. They were all quite expensive. You could see the cogs just going in her head. She told the lady it had to be under $50 because that is all she had because she has to pay for the initial pearl. So another deal was struck…the initial pearl, 50%. Cassie picked out a real pretty shell pendant. Her free pearl was also pink.

She was hooked. At the next place she gets black twin pearls. I spy dangly dolphin earrings. I told her I will get the mountings for Christmas, if she likes. She is him hawing around, and tells this lady about the deal she struck at the first place. Yes, they will match it. So we get those mounted and she gets a free black pearl. The lady here asked Cassie to come back and show her the earrings after the glue set, if we had time. We did and she got another pearl. She wanted white. She got it. That was our last stop before we left Hawaii.

On one of our tours, she got MORE pearls. She ends the Hawaii adventure with a sum total of ten pearls, three in mountings. They are different shades of pinks, purples, black, and white. She has them in her special jewelry box. Yes, these are the only souvenirs she got. Honestly, most kids probably would have picked out junk that I would have had to dispose of in a couple of years. These, she can have for life. And most importantly, she had to spend her own money. So she had to determine HOW important what she wanted really was. I am very proud of her.


Sorry about the delay in the updates. We had a very hectic week, good but hectic. I have been swamped at work. Our region office even said to plan to work the weekend. I never got too stressed. Did come in early, work through lunch, and stayed a bit late, but I DID get it all done Friday afternoon!

We had a wonderful weekend. Some of Jerry’s family was in. We were able to keep his nephew Fri night and sat. He is a wonderful little 6 yr old. Cassie and Denver played nonstop. They never fought. Never even had a disagreement. They never made a mess and cleaned up after themselves. That was the best company I have ever had stay over. Cassie was so tolerant of anything he wanted to play.

It has been absolutely miserable heat here. Yesterday evening we spent in the garage playing darts. It was hot but bearable then. It was the perfect evening for beer sampling. Cassie wanted to get us more and more beer. (Carol will understand that reasoning) I think we split three (that is Jerry and I, not Cassie and I). Thank you M & K. basically, we had wonderful family time. Jerry and Cassie spent time together, just the two of them. We had some extended family time. And we had just the three of us time. How much better can it get?

Tuesday, July 19, 2005 11:59 AM CDT

A break from vacation chronicles

Saturday, Mark brought Cassie over. This started off with a bottle of Passion Mango wine. I told her I thought fruit would go with it. Off to the store we went. She immediately begins talking about cooking. Grilling fruit, cutting fruit, serving fruit and meat. So in excess of $100 we leave the grocery store with ALL kinds of fruit. We grilled mango and chicken and pineapple and chicken (in the deep freezer). Then she cut up and prepared all sorts of fruit. She used the top of the pineapple as a centerpiece and surrounded it with mounds of fresh fruit. She even put some grilled pineapple on there. She used origami and folded napkins. Got out the china and crystal glasses. Oh, did anyone know that red wine needs to be served out of a large wine glass and white, a small wine glass? I didn,t. I thought one was a wine glass and one a water goblet. My 10 yr old is informing me of this. The Food Network has filled her brain. It was honestly like talking to a real chef all day long.

She gets out three wine glasses. What is the third one for, I asked? Well, I am trying it too. Oh... She helps me open the bottle and asks to pour. I look over and see she poured herself a full glass. Whoa Cassie, you can have a sip.

What a setup! The magnificent fruit laden centerpiece, the real table settings, and the bottle of extraordinary wine. Incredible ambiance. What this truly was, was an overboard tea party. I guess us girls just don't quite grow up. It was wonderful, me and Cassie! Mark collected her and Jerry and I repeated this an hour later.

Jerry says that this is most likely the best white wine he has ever had. It really did taste like mango. And how did I know this¡Kwe had mango to compare it to. It was great. About the sweetest I can tolerate, though. It went perfect with pineapple chicken, too.

Cassie took one bottle of wine and made a day of magic with it. All for a sip. We had so much fun being creative, and cooking, and me getting talked to incessantly about food network, and just having mommy-daughter fun.
***thank you Mark and Kathryn***

I really am so glad that Mark and I weekly swap in the summer instead of him having her six weeks straight and then me six weeks straight. It makes it so much easier on all concerned. She kept thanking me for asking her dad if she could come be with me for the day. I am going to say she has gotten used to being with me day in and day out with all the vacations.

Back to vacation

The travel agent we used through Kiwanis International sucked! But they did get us on a great circle island tour of Oahu. Our driver was telling us all kinds of stuff. Cassie told him she saw on ¡¥food network¡¦ of an out of the way shack that was famous for its shrimp. All the locals went there¡Kdo you know where it is? Yes, I do. Do you want to eat lunch there? Really? So he announces to the entire bus that a little lady on board requests a special place she saw on TV. And if there are no objections, and nobody complained about eating about an hour later, we are going to a shrimp and prawn farm for lunch. It was wonderful! Messy! Cassie sounded so sweet thanking him. Oh was that child excited. At another stop he gave her the bag of caramel popcorn with macadamia nuts that the establishment gave him for bringing the tour bus there. The 13 of us on the overflow bus had a much more fun just because it was more intimate. We were all talking to each other not just sitting in our chairs staring out the window. And Cassie was an integral part. Later I will write about the reporter on the bus with us.

They got to go to Pearl Harbor. Both loved it. Okay, hated it but got so into it. We also managed to get to the Dole Plantation. That was a waste other than Cassie finding oysters and THAT is another story.

and one more thing...check out the dolphin photo. Cassie thanks you for the poem you wrote for her. it really is priceless.

Friday, July 15, 2005 7:26 AM CDT

Next vacation installment…

We went to a Dive-In. That’s right, not a drive in, a dive-in. Never been to one before. Actually, never heard of one before. And we went to two. The dive in was at the pool. A huge screen is brought out to the pool. This ‘portion’ of the pool was huge but just 3 ½ ft deep. At sunset, the movie starts. Kids just swam, floated on tubes, or sat on the pool step and watched. We adults just laid on the loungers. There was a lot of backround noise between the constant wind and the breaking waves on the shore. We saw The Incredibles the first night. What a cute movie. Oh, they even served popcorn for free to us all. The kids were actually eating their popcorn in the pool. The night before we left we saw Daddy Daycare. Also a cute movie.

The first night actually got quite chilly, but we were not about ready to leave. Come on! A dive in. that was just too cool. The second night, it began to rain, a hard drizzle. Now it only rains 10 in/yr here, not like the other side of the island that gets 200 in/yr. and we are getting part of it. Do we even think about leaving. Heck NO. our last night in Hawaii…at a Dive-In…at an incredible pool at the shores edge…so we just covered up with dry towels and laid in the rain.

I was thinking, years ago I would have gathered up my children and shuffled them off regardless of how long the movie had left. I decided when the rain began…screw it. This is a once in a lifetime event and I will NOT ruin it for Cass, and for Susan and I as well. I chose to make it an adventure instead of a disappointment. It was Susan’s idea to go to the second movie. And never once did she say anything about the rain. I hope she saw it the same way as I did. It still amazes me how much I have changed since Savannah’s diagnosis. I am so much more laid back and easy going. None of my plans for the big island worked out. And it never bothered me one bit. What happened was even better.

The pools at the hotel were awesome. One set was closed for renovation. The other set began with a sand pool for the wee ones (I guess the wee ones at heart, also). It blended into the big 3 ½ ft pool the dive-in was at. It went under a bridge and went into another pool with waterfalls and a hot tub. It continues through one of the waterfalls into a cave. Within the cave was another hot tub and a bridge. Then continued back out to the sunshine where the water slide was. The hot tubs were kinda stinky. I guess hot water, in a hot environment, in a cave, a ton of sweaty people. Yuck! But still, it was cool. I just hope they treat it frequently.

They also have a beach they made. Snorkeling is available within this enclosed bay. They had all kinds of water toys for rent, even kayaks. So you can imagine the size. Oh, another large waterfall in this bay. The bay out to the ocean was further on down the complex. Just an inlet created in between two lava flows. It was a swim at your own risk out there, riptides and such.

The above was on Hawaii. On Oahu, we were on Waikiki beach. We had a blast there. We were out soooo far and still the water just came to our waists. We played in the waves, three kids (two big and one little). Swallowing too much sea water. Tearing the heck out of our feet on occasional rocks the waves threw us on. Yeah, the ocean was beating the crap out of us but we loved it. I actually burned a bit. Susan got a pretty bad cut on her big toe, and cassie was puking sea water. And we never stopped laughing and having a good time. There were many outriggers there. It was neat to see them go by. It was so…just…Hawaiian.

Tuesday, July 12, 2005 6:05 PM CDT

Check out the new pic from vacation!!!

Many stories to share…

We took a plane ride around Hawaii. First off, I can’t stand small planes. They scare me. I would never fly with Mark when he had his license or the airplane. Of course, I didn’t trust his explosive behavior either. We are walking out to the plane and I finally realize my error in signing up, a 10 seater. Too late now. We take off and the pilot informs us it will be bumpy along the Kona coast. About 5 minutes into the plane ride he asks who brought the good luck with them. This was the smoothest flight he had ever taken here. He made a big deal about this. Of course I figured we had a little angel with us making sure mommy didn’t freak and ruin it for everyone else.

It was a gorgeous ride, crystal clear. It had been dreary and very voggy (that is volcanic fog) all morning. We board the plane and the coast clears. About ½ hour into the flight, Jason (the good looking ex navy seal pilot) says…oh my God…don’t panic…nothing is wrong…wow! Who brought the good luck? He could actually see the steam from the lava entering the ocean 80 miles away. The vog had disappeared. He says we are going in for a close look. Most don’t get to see because the vog obstructs the view. It was COOL. Then he asks other pilots how the crater is. One responds…at the moment…clear once you break through the surrounding vog. Jason says he will do his best, no guarantees, but we are going in. As we approach…the vog shifts to the north and we have a clear path into the caldera. He tilts the plane and in we go. The inside of the crater is solid except for three spots that have exploded out. We couldn’t get on top of that part, so we didn’t get to see the boiling lava which was inside the erupted spot. It was getting hot inside the plane when we were that close. Jason again asked who brought the good luck. The mountain top had not been seen for over 6 weeks, and the vog moved for us.

Off to the rainforests. Akaka Falls (that is the Jurasic Park waterfall) and a ton of others. Cassie got so excited. The incredible cliffs into the ocean. Breathtaking!

I noticed a beautiful rainbow out the window but it was crystal clear. I kept looking and noticed a double rainbow. I thought I was losing my mind, so I asked Cassie if she sees it. The rainbow? Yes! Do you see two Cassie? Yeah! Just then a huge bump. My head hits the ceiling of the plane. Both rainbows are gone. We did have us a nice roller coaster ride for a couple minutes. I decided to have fun instead of getting scared.

He flew over our hotel. I asked Cassie if she could see our room. Cassie said…THAT is our hotel? Whoa! Jason says they call this resort the Disneyland for adults. But I will share that in a later story.

To finish the ride…the landing of course. The smoothest landing I have EVER had in a plane. It was like Jason landed the plane in feathers.

What a wonderful plane tour. Now…what WAS all this good luck? How was OUR trip the only one in six weeks to see the caldera up close? How was our flight the ONLY one that was completely smooth down the Kona coast? Why did the vog lift for us and then return? Why did Cassie and I both get to see a double rainbow that just vanished?

I had initially walked onto the airplane again thinking about Savannah. Or the lack of Savannah. This vacation was about Cassie, about Cassie and I together. A new beginning, so to speak. I had intense moments of sadness, but more on that in another post. Oh, and Jason touched Susan’s leg. I am jealous. This is for Susu…exactly how long can you go without washing your thigh?

Monday, July 11, 2005 8:44 PM CDT

don't panic

we are back from hawaii

it was beyond words

i will elaborate later

38hrs and counting with no sleep travelling home

bed calls

will update tomorrow

paradise

Thursday, June 30, 2005 12:04 AM CDT

thurs PM
checkout the new picture.

can a picture be more perfect?

i didn't think it would affect me this way. is that the same child? was she real? did i dream her? i want my baby back. i would take her back sick in a heartbeat. oh, how I long to be with her. did she ever really exist? look at the smile. she was beautiful, so beautiful.

i remember that night quite clearly. it was the end of a fundraiser i did for Gordon McClaren. He was incinerated on the American Airlines crash at Little Rock. He, his wife, and four others from Russellville. I was in Ormond, FL. at the time with the girls. Mark called me. I have pictures of the girls that i took the day he called me with the news. they couldn't locate him. others i knew survived. it was very hard boarding the plane home. the plane was in two pieces at the end of the runway as we landed. enough! damn it.

anyway, he had been pres of Kiwanis. had asked me if he could nominate me for pres. i had turned him down. i told him both of my children had to be in school first. they required too much time and i would not deny them. i kept to my guns. he became an advocate for our local arts center which was about to close its doors.

i began rose day. a semi annual fundraiser to endow an art center scholarship in honor of those who perished that day. i did this almost entirely on my own. anyway, i received a couple dozen roses myself. i kept the puny ones at the bottom of the shipping boxes for me. what was i going to do with puny roses? a friend of mine suggested i bathe in them. i laughed, never heard of such a thing. he said relax, you deserve it. have Mark bathe you. I thought that was so romantic (maybe i do have a little romantisism in me). the more i thought about it, the more excited i became. a special moment for me and Mark. I told him about my plans. he told me, "That is the stupidist thing I have ever heard of." I was crushed. 'Well, i will do it alone.' I turned on the water. Screaming behind me. In run Cassie and Savannah getting naked as they ran. We are taking a bath with you. well, i thought, so much for my relaxing. They jumped in and the picture says the rest. in my utter disappointment, I was given one of the happiest moments in my life. i started off selfish, and ended watching my girls in a tub of rose petals in complete bliss. what can be better? honestly. i locked the bathroom door. locked mark out. he was not to ever share that moment. yeah, i have a bitch streak. not that he ever even knew the door had been locked.

that is the story of the rose petal bath. hopefully, it will someday be captured on the bike. if not, i still have my memories. 'you always have memories. nobody can ever take those from you', I was once told.

this is so hard. cassie keeps magically interupting everytime i start breaking down. i look at the picture as i hold Savannah on my lap. damn it. that beautiful child is a box of ashes on my lap. this is WRONG. so WRONG. where is God? no god would do this. my God would NEVER have done this.

----------------------------------------------------------------

i forgot to put on my Savannah/mommy pin this morning. i feel naked.

jerry is coming home tonight to see cassie. she is spending tomorrow night with her father. i can't wait to see him. he has a new toy, an airbrush. he is teaching himself how to paint. the bike is getting a new front end, so it is time for the new paint job. since he is of artistic nature (i can't draw a stickman, still don't know how i freehanded those dolphins), he is going to paint the girls on the bike. we discussed colors and pictures. our first choice (right now) i will find, scan, and place here. he is sooooooo excited. this will be good for him. he is going to be working 7 days a week for quite a while now. his choice. if he forces his subs to do it, he has to be right there with them. so we will see him even less, but at least he will be busy.

i wanted to share a story about 'our finest'. the night before we left for Sparks, OK. there was banging on my front door at 3:30am. then the doorbell rings. there are lights in my driveway. jerry goes to answer the door. remember, i just put over 30 braids and beads in his hair. it is the police. i bet he freaked them out. my garage door was open. i forgot to close it. they told jerry they patrol the area (a cop used to live across the street) and have never seen it left open. they asked for his name. he apologized for forgetting to close the door. they left. when he said it was the police, i remember thinking that it is not bad news they are going to bring. i was so calm. and of course, i had nothing to fear. i heard jerry say the garage door and i knew i forgot to close it. i am pleased to have a group of local officers who saw something out of the ordinary and investigated. if something really had been wrong, they could have saved our lives. kudos to the RPD. now watch me get pulled over and get the first ticket in my life.

cassie and i are getting excited. vacation in just a couple days. she will finally get to swim with dolphins. that has been her life dream to date. i really hope it is everything she anticipates it to be and is not disappointed. i will be out of my conference for that. i wouldn't miss watching her for the world.

i was listening to John Mayer this morning. again stuck on a video idea. anyway, my conclusion...to a woman, the sexiest man in the world...

a daddy!

that special love between a man and a child. that unconditional love, the bond. it fills me with goosebumps.

Tuesday, June 28, 2005 8:57 PM CDT

cassie helped me change the calendar from May to June tonight. yeah, I am slow. i was thinking as we did it. i did not change the calendar for one year from march of 2004 until march of 2005. that was the month in 04 that my daughter entered hospice. i miss savannah. i watch cassie grow and know savannah never will. (we tended to a pimple on cassie's nose this eveving) i cannot put into words the depth of my sorrow. it is so deep that tears don't even come right now. they were here earlier today. i was telling jeanne, angel rachel's mommy last night that the tears come more weekly than daily. but i do think that is a bit wrong. it is the intensity that has weakened. i cried three times that i remember today. it was just a welling up. a deep sadness.

okay...what i wanted to write about was Cassie. she is growing up so fast. i was tucking her in. she wanted me to lay down with her. i wanted to write. 'just five minutes mommy.' 'you have me all night, baby. some day soon cassie, you won't want to sleep in bed with me.' 'mommy, but now i want to soak up all the mommy i can get, now.' is that not absolutely precious. and no, i didn't lay down with her. i know, i need a spanking. i needed to document it before it floated away into a good night sleep as these things always do. this is the child i have.

again, i drifted away from the jist of this. i noticed tonight, and this has been going on for a long time. i just never realized it until tonight. cassie will say...mommy? what babe? I love you. it is frustrating to CONSTANTLY be interupted. then i thought...whoa!!! for those who are long time followers...this is what savannah used to do to me all the time. just when you are ready to beat your head because of the nonstop interuptions comes the 'I love you's for no other reason other than they love you. can you beat that?

cassie is bidding. it is time to retire.

Jennifer and Bryan...congrats of #4. actually, i hope it is a girl. i can't wait to see his glowing face the next time i go in for a review. you are a total doll, a beautiful pixie, and a total mommy that i admire.

i bid all a good and pleasant night.

Monday, June 27, 2005 12:08 AM CDT

Back from the bike rally at Sparks, OK. It was HOT. I don’t do hot well at all. Mid 90s. I was very concerned how I would hold up. So was Jerry. We drank tons of water and ate very little during the day and no alcohol or caffeine until the heat of the day was over. He kept dipping a cloth in our cooler filled with ice and placing it on me to cool me down. Never did get around to having another tat contest, so we finally left Sun early afternoon.

I wrote last about loving to see different cultures. Well, I did. Honestly, it reminds my of a Grateful Dead concert, except a lot more leather and tons of bikes. I braided all of Jerry’s hair and even put orange and black beads in it. He looked great!!! I had a bikini top spray painted on to match my dolphin tat. No, you won’t get pictures of that. Lots were taken, but none will show up on this site. It really did make it easier to take the heat on Sat and Sun. I will speak no more on that.

I like to people watch. They were expecting about 12,000. Honestly, I didn’t think they would get there. Sat night, the people poured in just for the evening. All kinds of fancy leather. The women looked a whole lot better and were wearing makeup. I figure all the professionals (drs, lawyers, etc.) from OK City showed up for the night with their pretty little wives donned in expensive biker apparel. I am not meaning to sound negative in the least bit. It is just an observation. So many trailered their bikes. It was funny watching big trailers unload these beautiful bikes just a mile from the rally, so they could drive in.

I recognized several people from the Oct run, and several people recognized us. Well, actually, my tattoos. And a couple people said they recognized the tats from pictureman’s web site, ridingfree. The weekend had a couple big bumps and bruises, but all in all, it was good. Met and talked to many people. No one is a stranger.

Wednesday, June 22, 2005 8:19 AM CDT

Tattoos
Everyday…just about every hour…about twenty times a day…I was stopped and told how beautiful the tattoo on my shoulder is. Almost everyone asked if it was Cassie. No, it is of her little sister. And then I would point to the pin I was wearing. (thanks Mark S) Many times I left it at that. If they continued to ask questions, I continued with our story. Sometimes I didn’t feel like it and just left it at my other daughter. A couple times, Cassie told the story and would tell me to show them her dolphins. Quite cute. She was an excellent child last week. Even if mom didn’t get off her back. Cassie held my hand where ever we went. Honestly, losing me is probably pretty upfront to her with everything she has gone through.

I was the big bad aunt. Found my niece once on accident. She wandered off from my sister and brother-in-law. Had the whole family in a tizzy. I was very stern and made her stay with me. I always told her…just ask my kids. I am mean and do what I say I will do. ‘that’s right’, they would always tell her. She minds me well now. I made everyone stay put instead of looking for them. I learned long ago, you will walk circles around each other. So, stay in one place and everyone will find you. It worked except for my dad who had to leave to find my mom who was also looking for my niece. Well, he never found my mom. She found us, of course. We eventually all caught up at dinner.

Funny, some people you never see on a cruise and others seem to be doing the same thing you are for an entire week. Cassie and I were constantly running into my family…everywhere. And another group of people, too. Never talked to them. But wherever we were, they were, and visa versa.

This weekend is the Sparks Bike Run. I will drive my truck and Jerry will take his bike. Yeah, I am not a biker. Hurts my tushy too much. I hope I am better enough to take the heat. I don’t do heat well anyway. We will camp. I am looking forward to it. I want to enter the dolphins in the colored tattoo contest. Jerry is actually taking Thursday off and packing. Hmmm. We will go on Friday.

He didn’t even see us at the airport until we were right on top of him. He looked so lost. Even wearing shorts (something I have gotten him to do on occasion now). Cassie wanted spaghetti for dinner. Jerry went to get some meat from the store. While he was gone, she set up the chess set she bought for him for Father’s Day and wrote out a real quick card. I got chewed out from my brother for getting one for her father, also. I really did try to explain to Tommy that life is too short. And if Cassie wanted that for him, so be it. Someday it may be reversed. She may find something perfect in her eyes for me. I would hope that he would be man enough to allow her to get it. I did have to carry them, and they were heavy. That was NOT pleasant. But oh well. It is done and Cassie is very happy she got something special for the men in her life.

We had a nice flight to and from Tampa. We went through Atlanta. That has always been one of my favorite airports to travel through. If you mention JFK airport to me, I cringe. Cassie asked if that was the one with the underground trams? It is amazing what kids remember. We rode the tram quite extensively the morning of the 12th. We got to fly around the first hurricane of the season. It was a beauty. Mostly broken up but still fills you with awe.

Monday, June 20, 2005 6:44 PM CDT

Cassie and I have made it home. We celebrated my parent’s 42nd wedding anniversary on a weeklong cruise. This was supposed to happen two years ago, but Savannah had gotten ill, so it was delayed. I did thank them for waiting an additional year for me. I won’t lie. I shed many many many tears while on that boat. It’s amazing what you can hide behind sunglasses. A Disney cruise was the one thing that I could not give Savannah. She was just never well enough to go on another one. This was Carnival, though. It was good. Couldn’t compare to the Disney one. The food was better on Carnival, but the entertainment…aggghhh. In general, the Hoven family loves theater. Even my nephew Keaton, who is three, was singing from The Phantom of the Opera all week long. (Okay, we are all just Andrew Lloyd Webber/Tim Rice junkies.

It was like eating on the food network. If someone leaves that ship without a new roll over their bikini, they wasted the trip. They actually served Weiner Schnitzel one night. That’s my favorite. Cassie was in heaven. That child ate me under the table and then some. She was driving me crazy because of the food. I think it is just too reminiscent of steroids. Constant. Before a meal is done, they are asking how long before the next meal. When life is just a whirl of food. I missed dinner one night and came for coffee. I was just overwhelmed.

Boy, am I jumping around. We went to Mexico (Costa Maya and Cosemel), Grand Cayman, and Belize. This is up my line of things I like to do. Ancient cultures and ruins. But I never made reservations for tours. That is so unlike me. I am the anal retentive one who has every day scheduled a month in advance, and I walked on the ship not really having a clue of what we were going to do. Damn good thing, too. Cassie proceeds to start coughing and coughing and coughing. I had a brand new big bottle of cough medicine I brought (I travel with my own pharmacy). It wasn’t touching it. I was getting so scared. This is how her asthma starts (actually, this IS her asthma, I thought) except her inhaler wasn’t doing anything. Finally, I asked Cassie if we need to make an emergency visit to the on board dr. They kept checking her lungs. They were fine. After an hr, they sent her to bed. I hope they didn’t think I was overreacting. I wasn’t, but they may not have known that. Cassie’s very first full fledged asthma attack was unstoppable coughing then her lungs closed. She was following the same pattern. Anyway, so she was puny. Then real weak and couldn’t tolerate being in the sun for more than 15 minutes. Then she goes from being too hot to being chilled even though she never ran a fever. So much for Mayan ruins and so much for the beach and so much for swimming with stingrays. So I told her we will just wait and when she feels better we will just take a last minute tour. WELL, mommy catches this bug now. Exact same thing. Needless to say, we didn’t take any excursions. But, I did take her to the spa. Yes, Cassie and I took our own excursion to the onboard spa. It was air conditioned; we were spoiled, and treated like queens (Cassie’s words).

We did manage to leave the ship for about an hour to shop at every port. Neither Cassie nor I like to shop, but we had fun. I had to go into the Lalique store and just take deep breaths. They had a large certain fruit bowl that I love just staring at. I have a small piece, that is all I need, but it is still fun.

We accomplished everything we set out to do. Except the tours. But remember, for some reason I never planned any in advance, so that doesn’t count. And except for Harley shirts for Jerry from the islands.

I have a lot of checking up to do on my other kids and parents. I am so out of touch. But now I desperately have to do laundry and unpack before Audrey comes over.

Friday, June 10, 2005 11:18 AM CDT

I pick Cassie up today from her day camp on Mt Nebo. I am so excited about having her back. These separations are very difficult on me. As they are on her. That is one of the things that suck about divorce. I used to dream of having time to myself again. But now, I can’t seem to get anything done in her absence. I did work late a couple times this week. Jerry came in last night. And the other two nights I watched junk on TV. Now, that was boring, but I had absolutely NO motivation.

The meeting Diana Cross has been postponed until late summer or early fall. Maybe we will be able to spend more time together then. It would have been so very rushed.

My new tat has been itchy for the past two days. I guess this is normal. I decided a loose fitting summer dress would help today. It has a bit. It will be quite difficult next week to keep it out of the sun. And I accidentally hopped in the tub last night. I was only there about three minutes and hopped out so fast. It probably would have been fine…but I don’t want to chance screwing up something that is permanent on my body.

Savannah’s request for a dragonfly for jerry and then something for me…whatever I want, may not come to pass. I probably need to do it anyway. I can’t imagine them hurting more than this one. Even if jerry and I never get married I can still thank him permanently with the dragonfly. But honestly, where would I put it. There are certain places on a woman that tend to change shapes with age. So my thighs, rear end, and belly are out. I want to keep a nontatted arm and breast. I have all the time in the world. She gave me no timeframe. I want a hug from savannah. I, I, I words escape me. Sigh.

She was such a happy child. Seldom got in trouble. Seldom got hurt. Seldom cried. Until about 8 months prior to diagnosis. This happened to Rachel, too. I remember a few times…out of the blue…savannah would bust out into tears. For NO reason. Real tears flowing. She would tell me she missed Sindar (our dog that died a couple years prior). I remember another time she began crying and was inconsolable. She was missing her great-grandmother who passed away the year before. She did not know her. She also cried the same way for her daddy’s mom who passed away three years before Cassie was born. She cried for people or animals that had died. This was before she got sick. Well, actually, I guess she was presenting symptoms with this behavior. Think about it…would a dr. of said, hey; let’s check her out for a brain tumor if I had taken her in for becoming emotional. Looking back, it seems obvious that something was wrong.

I understand that the results would have been no different. There was no saving my daughters life if caught earlier. I think this knowledge really does help me cope.

I just still can’t believe that Savannah died. My daughter died. I know she did. I was there, I watched. It is surreal. Her smile. She glowed. She was so happy. I miss her.

Tuesday, June 7, 2005 8:36 AM CDT

THURSDAY NOON
Check out my new tattoo in the pictures.

evrything is fine here. i have been working late the past couple evnings. cassie called last night. missing me. she was so cute. trying to be so grown up but still wanting to be a child.
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Saturday we get to meet Diana Cross. Jerry asked if he could make breakfast for us. He is a sweetie. I am so excited and scared. There is something about standing face to face with someone who has taken the same journey as you. And honestly, is still goes on. Grief and mourning are not something that takes a year to get over. It actually seems more pronounced not in some ways than before. I think the first year we are in shock. We also have to deal with the rest of the world and their grief over our loss. As they vanish and move on, we are left behind. Many of us seem to still be very angry.

I am angry my daughter’s life was stolen from her. I am angry I couldn’t save her life. I am angry that the medical community does very little in new treatment options. Heck, the ONLY new one I ever heard of was Vioxx with radiation. It didn’t work, but at least SOMEONE tried something different. I am angry because of the STEROIDS. They turned my child into a monster. I am angry that people say stupid things instead of just saying, I am sorry. I am angry that we get so hurt by others that mean to do or say something nice. I am so angry that all of this was allowed to happen. I am angry that I refuse to go to church. I try but cannot do it.

At the moment I don’t feel angry, but I did this morning when I woke up. I did last night, so much so that I couldn’t sleep. I lay in bed tossing and turning, just angry. Not at anything specific. Just mad. Maybe tonight I can sleep.

Friday, June 3, 2005 6:39 PM CDT

long day.

i think this one broke me. i have never in my life undergone that much physical pain. i know it wasn't the artist because he did the unicorn and that really didn't hurt (in comparison). i lived through it. i lived through natural childbirth, too. but, it is beautiful. at least now both of my daughters have tattoos on their mother's body. so many people have said i was doing a bad thing by putting savannah on and not cassie. she will get jealous. well, not anymore. a mother and young dolphin jumping. it is very blue. my whole body was tender to the touch today. that was from being so tense. i did the proper breathing. gripped on to the seat with all my might.

i was wondering if maybe the raw determination of survival is fading. maybe my need to feel physical pain has slowly deminished this past year. does that make any sense? maybe it shows i am healing. i am not as close to her death and life as i once was. i am moving on? if that is the case, i don't know that i like it. but as a friend of mine once told me...Lisa, you are forever constant, yet forever changing.

cassie's asthma is acting up. i HATE this. she is at her daddy's now for the week. i wish she could be here for me to monitor her.

the family cruise is coming up in a week. i have to get more excited about it.

tomorrow i work all day at the office. i like working on the weekends (if the kids are gone). i get so much more done. i have one week to finish up the 2006 budget, finish two work orders, and draw a work order up for voice mail in one of our offices. aaaggggghhhhh! none of these i will be able to finish tomorrow even if i devoted all my time to them.

but i do think i will go out tonight to the club. it has been so very long since i went out all by myself. i just dread the 1/2 hour drive. we will see. i have a lot of ironing to do. hmmmmm. iron/dance, iron/dance, iron/dance. it's a good thing i like dancing by myself, huh? actually, a soak in the tub sounds good with all the jets, but i can't because of the new tat. dang it. maybe i can nab a pool table. hah, can you imagine how jealous Cassie would be if she found out? best get to ironing.

Wednesday, June 1, 2005 6:14 PM CDT

cassie is sick. i used to not freak out. now i do. i was up at 1:30am. she finally began to sleep peacefully around 5:30am and i fell back asleep for 1 1/2 hours. i got her in to see her pedi. tonsilitis. sigh! I forgot how high fevers could get. actually, according to her dad, she had been running a low grade fever since last thur. she does have an absessed tooth that comes and goes, so i didn't panic. it just progressively got worse. but her jaw did not.

at the clinic, there was a little girl with the same color hair as savannah. i guess cassie thought i looked sad. she asked what was wrong. nothing. just noticed the hair. she sat straight up, climbed in my lap, put her arms around me, and said don't be sad. it is okay. ha. what a wonderful kid. then we played with each others fat. afterall, we worked hard to get these rolls. we just sat together and watched VH1 all day. even though I get antsy and think of a million things i have to do, i sat. but now it is evening. a drink of Old Charter and 7up. time to relax. time to write.

we went to Texas this weekend. spent the weekend with Carol, Tom, kids, and animals. oh, how i miss my zoo. sydney and savannah got to meet. i wouldn't let syd go. we set them down so they could meet. they hung out all weekend. i will put a pic up, if they turn out. i had a fantastic time. thank you Tom for opening up. what wonderful neighbors you have.

i have always had a dream of having a pool table. carol and tom did. i was in heaven. i have never been a good player, but this was so cool. everyone was busy and i got on the table. i cleared it. only missed 4 times. never did that good in my whole life. heck, i shot all weekend like i never did in my whole life. sigh! still gotta have a dream.

the tat...
the evening prior to hospice.
mommy? yes baby. your next tattoo has to be a unicorn for me. what? yes, a unicorn for me. savannah! the one after that had to be dolphins for cassie. then jerry needs a dragonfly. you can pick one for yourself after that. savannah...i have no intention of another tattoo. well, we know what happened then. so where am i today...

the dolphins for cassie will be done on thursday. now there is more to the story. after my board meeting (cass was with me because she didn't feel good) i said i need to stop by backroads to see what the guy did with my drawing. about a mile away, savannah's favorite song comes on. Cassie, listen! Bring my to Life is on. Savannah's song. does this mean i am doing the right thing? hmmm. okay, we look. looks good. we get back in the car. the radio comes back on with Amy Lee's voice with Seether. the tattoo visit was surrounded by Amy Lee. Remember Savannah's obsession with her. Cassie, LISTEN. i almost screamed it. is it Karma? She says, sure sounds like it to me. then it will be done. It was going to be a small tat, but what was given to me will cover a good portion of my lower back. but to me, savannah spoke. i gotta go with it.

i stressed over the idea of someday being covered with tats in a nursing home. now i figure, what are they going to think? this old bag had one hellofva life. 'tis cool. my mom will sh*&. sigh. i have always lived for ohers. this is not a bad thing. but part of me is living for me. it is breaking the rules of society. even though i am still fulfilling my childs wish. forever on my skin. i will not only birth and raise my girls. i will wear then until i die. i was blessed with two of the most amazing little women on the earth. and i honor them. crazy as it may be or may sound. but i am humbled by two little girls.

my whole life is still up and down. stability...to the wind. we are going with the flow. i miss savannah. i hold her as i write. i still miss her. i want dream visits. i want to feel her. i yearn. i mourn.

i have been dreaming so vividly the past couple nights. my best friend who died shortly after savannah was diagnosed. then the girls father. just dreams, but vivid dreams. maybe it is just all the loss.

Friday, May 27, 2005 2:17 PM CDT

I haven’t had a chance to write. I think about it a lot. You know…while you are driving, while you are going to sleep, while you are in the shower. Then it floats away.

Jerry’s best friend came over from western OK to visit me since I didn’t have Cassie this week. Jerry invited him and then came down from Fayetteville to visit a couple evenings ago. I did have a breakdown after Jerry went to bed. David did good. He just held me and let me cry. He said nothing stupid. He just let me cry. I actually have him talked into staying an extra day so jerry can visit with him tonight.

We have a wonderful weekend planned. It was going to be a surprise for cassie, but her daddy told her. Can’t blame him. I didn’t inform him it was a secret.

I had a longggg day on the road (several of them) yesterday. Saw lots of critters. A roadrunner chose not to cross the road in front of me. He was running down the middle of the road in front of me. An affiliated woodpecker was hard at it on a utility pole. I guess his mate was with him because there was another but the other did not have the red. I saw an albino guinea. And the funniest one was a dog. I am cruis’n down a gravel county road looking at poles. I see the blob move out to the center of the road. It crouched its front down. At the fur rose up. It was going to attach. I was thinking…could it be a different type of animal or maybe a rabid dog? Well, I made sure the windows were rolled up. His teeth were barred. He jumped and came at the front of the pickup at a dead run. I decided this was going to be the highlight of my workday, so I slowed down. At the last second he veered and went after the rolling tires. Now that I am used to in the rural areas. I was going a little fast for the dog so I slowed down. We kept an even pace until the end of his property. He stopped, returned to the center of the road obviously proud of protecting his domicile. I bet he gets rewarded with dinner tonight for his services. Then the little devil in me speaks up. I have a reverse alarm. I wonder what the dog would do when sound was involved. What would he do to a vehicle coming at him backwards? Can a dog even recognize this? So I stop. Yes, I was going to have some fun. I kick it in reverse just as the neighbor pulls out of their driveway heading my direction. CRAP! I just went back to looking at poles. Looking at poles. Huh, that sounds so simple. There is a whole lot more but in a nutshell I was looking at poles. Even had to back up and look at the same ones twice. Sometimes I even had to leave the truck and go look at the poles up close.

Oh, I was turning around (yes to look at the poles again). I was checking my mirrors and turning my head. There was a school bus barreling down the road at me. Anyway, all of a sudden I glimpsed Savannah’s face somewhere. I didn’t exactly know where cause I was really working on getting out of the way of the bus who was much bigger then me. I was freaked out. After I was off the state highway, I pulled over and started maneuvering around to find what I saw. Finally, I saw it. The side mirror caught the reflection of my tattoo through the window (still rolled up from the dog attack). It was the same except…except my brain had picked up a 3D colored flash of her looking off to the side. If I moved my just so…she looks off to the side on my arms. Amazing!

I wish you all a wonderful and safe Memorial Day weekend..

Monday, May 23, 2005 9:00 PM CDT

Tues

i just want to cry today. i want to dance. i want to move. slow, not fast. i need to release. what, i am not sure. it really has been hard to keep my crap together at work. i have been burying myself in work the last couple days. thank you all my angel mommies!
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i remember.

this is what scares me to be alone now. i used to LOVE being by myself. i still love to...to a point. i was telling jerry yesterday, i craved alone time. to work on some project, read a book, veg out in front of the tv. he flipped because i rented a movie for myself. he said he never saw me do that. i thought that was odd, but maybe i haven't. i probably haven't in years.

when your heart stops, the blood stops pumping. blood is a heavy fluid. it settles. when i finally got around to bathing Savannah, her back was getting black and blue from the settling blood. i bathed my dead child. i have to. to get it finally right, i had to. i wouldn't want it any other way. i held my baby, carressed her, loved her, and she was dead. i miss her. but honestly, i have been missing her for a little less than three years now. i rubbed lotion into her back. it mattered not that the blood was settling. she was my child. to hell with what the world thought. life or death, she was my child. her father wanted the morticians to come and remove her corpse. i laid down the law. a moment of strength? who the hell knows and who the hell cares. three hours later is when they were called. long after everyone left except Lisa C., Jerry, and her mommy. how do you let go? I hear people say that. i actually wonder about their sanity. we don't let go. WE were never allowed to let go. Our children were torn away from us.

You know the one book that I cannot read. It has haunted me for years. I will read ANYTHING. and this book, I own, and cannot read. Sophie's Choice. Long before I ever had children I owned it and could not read it. I thought that was the most horrible thing a mother could do. How could you choose? How? the choice was made for me. NEVER NEVER NEVER IN A F'N MILLION YEARS DID I THINK MY CHILD WOULD BE TAKEN FROM ME> NEVER!@ this is insane. this is pure insanity! and i somehow got yanked for a ride.

it sucks. and yet i will still swallow and be there for a friend. at least i have them.

Saturday, May 21, 2005 10:05 PM CDT

this is the date i always wanted to be married on. just noticed it. may 21st. saturdays is when the church does their weddings. well, i origionally missed it by one day. and it won't happen again.

jerry mentioned a poker run for childrens hospital. i felt a cold chill rush thru my arms. childrens hospital. you know, i don't think i can ever step foot in there again. i don't want to attend a fund raiser. not that they are not worthy. i am just not strong enough. after visiting my friend jeff at the hospital in russellville and seeing the room. being all alone to cope. even having to dig within myself to ask for a shoulder and having their back turned to me. i just can't do it again. i can't risk my own sanity. all right, what little of it i actually have.

i actually got on tonight to brag. cassie! oh, what a child. i was planning on picking her up from school at 9:30am when they were released. she told me the night before. no! one of the other girls would be the only one left and she would not abandon her. okay, i will work 1/2 day and pick you up. she left with a garbage bag full of games. it even broke (i heard her yell...shit). i had to contain my laughter. she was determined to be there for her. i get a call at 10:30am. cass is the only 4th, 5th, and 6th grader left. yes, the other little girl was taken home. i immediately left. she was windexing with the teacher upon my arrival. she was beaming.

they had awards ceremony that morning (a note she had negleted to give me). she had a quiz bowl trophey. a presidential achievement certificate. a first honors ribbon. and a reading medallion. i was immpressed. the only thing she ever did this year that i saw was quiz bowl. you ask about other stuff...yeah, it is done. well, apparently it was. she asks me what i was most proud of. well honey, i am most proud that you wanted to stay at school so irene wouldn't be alone. NO! what are you most proud of that i got today! Cassie...i just told you. that you stayed at school, when you could have started your summer vacation. NO!!! you don't understand. yes i do! that doesn't matter. well, it does but it is not the most important. that threw her for a loop, i guess. i am extrememly proud of her achievements. but to me they mean more if you work hard for them. so among everything she was actually presented with...quiz bowl. she actually worked very hard on that. hard enough to be a 4th grader participating on the actual team. still, the most important, compassion and character.

time to go snuggle.

Friday, May 20, 2005 7:00 AM CDT

today is the last day of school. i am as excited as cassie. i was going to just work a couple hours then go pick her up...then she informs me, she is taking games for her and irene. they will be the only kids in her class today. cassie did not want to go to kids club. so now i will work 1/2 a day, go pick her up, eat lunch, then strip border in her room.

this evening is the engineering departments company picnic. we are looking forward to great eats. aubrey is our local cook...and excellent. we always look for a reason for him to cook. i joked about having a safety meeting tonight since we will all be together. trish said, yeah, it can be on drinking and driving. hahahaha! yes, unfortunately, i will have to severely limit intake due to having cassie and justin with me. oh, since jerry is working, i am taking christy as my date. she used to work here.

cass and i got home after work...the garage door wouldn't open. i tried and tried. frustrated, i get out and go inside the front door (we get entirely too spoiled to convenience). who turned off the lights over my counter? kinda dark. whoa! no power. sure enough. breaker box looked fine. so i checked with the neighbor across the street. apparently, we had been out about an hour. they finally got it back on about an hour later. we were in business, so i celebrated by ironing. yes, i am retarded. you know, i actually had to plug in a phone with a cord. what is life coming to when you have to sit in one place to talk? i did turn the air on for the first time. it was 90 outside. at least that works okay.

i got a call last night about a lot mark and i own. we may sell it. i still have the house plans i designed. sigh! a lot of hard feelings over that lot. my grandmother was still furious over that when she passed away. it was to be my dream home. on a lot which would have given me a view of the Arkansas River and valley (at least from the second story). time to cast aside that dream. i will keep my plans, though.

today would have been my 16 year anniversary. cassie asked me if i was okay about that. yeah, i am sad i was forced into a situation that there was no escape from other than the path i took. enough of that because i would never want to go back.

i have been given quite the challenge at work. don't ya love been handed something you have no comprehension of, no training, and told to design a system. i may be able to do a lot in the phone industry but i've never dealt with the switch. i get to learn quite a bit of new stuff. i do like that but right now my head is swimming.

Sunday, May 15, 2005 8:20 PM CDT

Wed AM

The week continues on a good note with a few down time exceptions. Brief moments of anger creep in. but I seem to recuperate from them fairly fast. I did field work yesterday. I wanted to get a plan together prior to writing a business case. Windshield time normally gets me to a better place. Don’t have to deal with anyone. I can drown in music. I only took the interstate for 25 miles. I like taking different routes there and back. Interstate can get so boring.

Today Cassie has her final Girl Scout ceremony for the year. I will be there, of course. Maybe her father will come also. He said he will try to fit it into his schedule. She should get several badges. She worked so hard at home. They are a lot harder then I remember when I was a kid, but maybe not.

Today are the elections for next year at Kiwanis. It should go smooth. The club nominated no one from the floor. They made a motion to accept the nominating committee’s recommendation. Cool. When I put together the nominating committee, I changed it from the past. Instead of only past presidents, I added the officers. I figured they will have to work with the elected people for at least two years. I think it worked out well. Only 4 ½ months of my presidency left. Can you believe it? It has served a wonderful purpose for me. It gave me something to dive into.

------------------------------------------------
1) www.caringbridge.org/tx/sydney
carol started the website again for syd. way to go girl! i know you were so concerned about writing so much in the guestbook. that is and was always wonderful as far as i was concerned. we are a network here.

2) Thank you to Everquest for the beautiful flowers. they make my diningroom so fragrant. i don't have a clue of who you are. beautiful purple and white. thank you so very much. they brightened my day and my spirits.

3) I had a very nice time friday nite. the owner (who likes to dj) actually played decent music. no one was dancing and at 10:30 she put on Evanesence. well, the dj knows i will always dance to that. she did fairly well.

i want to share something. i have always been shy. people think i have an attitude. the bartender approached me and asked if i would leave if they ran out of shiner bock. hell ya, why do you think i come? well, we only have two left. another couple just ordered. WHAT? who drinks that other than jerry and I? i told him to save it for the other couple. i won't screw that up for them. thanks. that was the abbreviated version. okay...remember i am shy. so i approach this couple and tell them they drink a very good brew and there are two more. absolutely wonderful couple from indiana. even audrey enjoyed Chris and her husband. us girls(40) danced together to Lady Marmalaude. we enjoyed ourselves. CT, her husband ordered a different beer so i could have the final shiner. soooooo sweet. it was a late night. i slept in a bit.

4) Cassie and I went to fayetteville to see jerry. we had a wonderful time. it was a lazy sunday. jerry laid down with me for a couple hours this morning and just we just held each other. then we went to the park. cassie came over once from playing and said...ohhhhhh, she was sooo cute, she reminded me of savannah. later jerry said...check out that little girl's hair, like savannah's. she is still with us all. forever a little girl. sigh! came back and layed down for an hour again. jerry was crashed. cass and i needed to head home. it was good. so good just to be held, so good just to be touched. i have always been a very touchy person if i care about them. he is sleeping alot. especially for a man that never slept over 3-4 hours a night prior to meeting me. i am very nervous about this. i know it has got to be depression setting in. regardless of the path we take through grief...we still go through similar things. or does grief have anything to do with it?

i was thinking, as jerry was holding me...i remember when Deb put her arm around me. i exploded on the inside. the bond of mommy to mommy was complete. thank you Deb for allowing me into your personal circle. it meant more than i can describe. one of those friend that i don't have the necessity to talk to, but the depth will never become shallow. of course rob i hugged immediately. i was scared i wouldn't let go of him. i am sure the two of them were exhausted from all the hugs.

5) a question to the audience...what do you think of the paint on the walls? check out the picture with the Schleigh's. that is the new paint job. it was so much fun, so easy, and it looks so formal.

6)portal. now words escape me. i know any other parent who has taken this journey knows what i mean. a bond, a view to the soul, staring at death, knowing we have no control with love so intense, emotional overload, a knowledge given to us that others we pray will never have, a revamping what is truly important in life? this and so much more. a gift or a curse? i took it is a gift. i feel for those who turned their back, went into denial, for they missed out on life. enough. i am remembering too much. i remembered little spitfire at 3 and 4 today.

time for bed.

Friday, May 13, 2005 9:04 PM CDT

tomorrow i want to write about how obtaining knowledge that your child is going to die opens a portal to the soul. it works between parent and child. it is a choice for the parent to see the gift and embrace it or become scared and run. i have seen this with all my other angel's parents. Cassie is at a birthday party tonight. i am going out. actually putting on makeup. i was thinking about how savannah would get so excited about my getting dressed up and putting on my face. she would always say i was sooooo beautiful! i told her i would keep her around just for that. she made that part of the separation easier. i also remembered when the girls were at daddy's. i didn't want to go out. laura would make me. i dreaded the makeup. i despised the clothes. but i knew come sat morning, i would be in a better place. i always was. so i forced myself.

i miss cassie. she was so nervous about leaving me. i will continue tomorrow. my friends should be here.

peace to all. even though i am sad and i miss my girls and i miss jerry and i am sad for all the other families missing their babies, i am smiling. for i got the gift into the soul and i embraced it.

Wednesday, May 11, 2005 9:12 PM CDT

NEW PICTURE. THE SCHLEIGH"S VISIT. What a wonderful time that was. it was a lifting feeling, the reality of a connection. to touch Deb, Devin, and Rob. they were real and they lived in hell, too. they cope (barely). enough to make it to the next day. in their case with a new chapter beginning, trying to make it to the next hour. they gave me hope.

still fine today. i just could NOT sleep last night. of course, i can barely keep my eyes open this morning.
----------------------------------------

i was at a good place today. a coworker asked me to visit him at the hospital.
of course. i was a bit anxious walking into the hospital that my daughter died in one year ago, but i can do this. i am walking down a coridoor. the dreaded room is approaching (what! this wasn't supposed to happen!). i know it is not the same one by the number. but i have to turn. i have to turn right in front of it! damn it. i look in. my child died there. my baby. i couldn't save her. i had to turn left. thank you God. first door on the right! it took me a couple minutes to compose myself. i enter. i am fading fast. i am NOT there to bring him down. it goes alright. he is recouperating well. i leave. i walk out the door to stare into the room once more. i couldn't move. yet, somehow i did. i was going to die on the spot. i had to run and i did. i was sinking so fast. i was all by myself. i was lost. i put on my sunglasses in the elevator and was in tears when i walked out. all alone and my baby died. i see this on syd's angel date and the day after mel's birthday? and i am alone. there is no telling how long i sat in the company truck not moving, just crying. i turned the radio on. i here Amy Lee with Seether. Broken. i was completly Broken. that angelic voice that savannah loved soothed me. in my tears, i smiled, and held my child on my arm. i left. when the song ended, i switched stations. again Amy with My immortal (just the end but good enough). it got me to where i could drive without causing a wreck.

i called Jerry. and began to tell him. i NEEDED someone. not very often i say that, but i did then. I am so sorry, but let me call you back in 10 minutes. one of those FLOORED moments. he never did. i ask myself so often. why am i here? the man who held her during her seizures when her father just left. easier? i guess, i just have too much drama. i have kept everything inside my whole life. i was forced to loss the intense stuborness with the illness of my daughter. to honor her, i had to reach out. to honor her i had to learn how to accept.

i remember when Mark had his first heart surgery to impant the defibrilator/pacemaker. I asked my mom to take off work and come watch the children so i could be with my husband. of course she did. Mark became mean. MEAN MEAN MEAN MEAN MEAN. they wouldn't give him his Zanax. I never crossed him. i never raised my voice. nothing i could do was right. he cussed me like a dog. i even asked the nurses. he is scared, they said. actually, i was the scared one. but i never left. until he got the blank look in his eyes. nothing was there. Nothing! I knew this look. he told me he didn't care what the F I did, where the F i went, just GET OUT (he never spoke like this...i am the potty mouth of the family). i finally got it. he didn't want his wife. the moment i walked out was the moment i felt in my heart he had the capacity, the emptiness to kill me. i told the nurses and left. on the way driving back to russellville, the strangest thing happened. my heart started doing crazy crap. it was hopping and bouncing all around. now, mind you, i had become a cardio expert with mark's condition. i knew i was not going to die. i knew it was stress. i made it home. i had mom check (good to have an rn as a mom). way bad irregular. you could see my chest cavity bouncing.

i didn't abandon my spouse. i have been told i was an idiot to sleep 1 1/2 hours, get up, and drive back for the surgery. i was his WIFE! rush hour and an accident on the freeway caused me to arrive when he was taken into surgery. the nurse said. oh, it is about time you arrived. mark was asking about you and the surgeon wanted to talk to you first. now i am a Bad wife. bad wife bad wife bad wife. shift change is a wonderful thing...don't you think?

upon returning home everything was fine EXCEPT one thing i would find out at the next surgery. no more would my parents help my husband. never once did he thank her for taking her vacation for a week. not once did he thank her for tending to his children. not once did her thank her as she set down his dinner that she cooked for him, his favorite foods even. not ONCE. burned that bridge! and I agree. i was so wrapped up in my spouse that i never saw that.

hello Karma.

his next surgery i drove him down, left him, and returned to pick him up upon release. i had no one to watch my children. even my boss berated me. he didn't offer to watch my children. a few months later, he is about to explode (remember blank eyes). i shuffle the children to bed. he says...i am in arythmia. i told him to lay down. The next day, i hear how hurt he was that i abandoned him. KARMA!

Tuesday, May 10, 2005 3:48 PM CDT

I am in a better place. Take a deep breath. Today is Melody’s birthday. Keep the Schleigh’s in your thoughts. Tomorrow is Sydney’s angel date. Carol is in a bad place. Duh!!! Please bombard them with good vibes. What I have found out is many of us experience the same thing, and it seems like we all feel abandoned to a degree. Even those who you think are the ones who will understand run like hell and leave us behind to cope alone. Sigh. We are strong by nature. It just don’t feel that way when you are huddled in a corner in fetal position. When you hear the phone ring yet just listen to it ring and ring and ring. But maybe I don’t see what is in front of me. Maybe this callous attitude we see is their mourning and not their non-interest or fear. It is still hard when all you want is to be held…okay even their presence…and they walk away. Are we like that also? It is hard to be rational. Heck, I can barely remember what I ate yesterday.

I went to a Prayer Breakfast yesterday. It was nice. I was asked if I wanted to say something. Just couldn’t. First off, not my cup of tea. Second, after the day I had before, I was lucky to be in public. Seether came on as I pulled into the driveway with Broken. I felt that was appropriate. Then as I parked, against the dark sky was a rainbow. My breath escaped me. I knew I would be okay, maybe not good, but I would get to a higher place today. I actually functioned and got a lot done at work.

Stay busy stay busy stay busy. But I really do feel better. Now the next hour might be totally different. Remember the Hernandez and Schleigh families today and tomorrow. Thank you so very much.

what a strange entry i made on sunday!

Sunday, May 8, 2005 9:02 PM CDT

yesterday i went to Hot Srpings to watch the simulcast of the Kentucky Derby with friends. i lost big, that means $40. that means i didn't cash a ticket. by nature i am not a gambler. i took a long shot on the big race. $2 on Closing Argument. i liked the name. and with the odds of 69:1, what else could i do but bet. needless to say, i bet to win, not to show or place. dang. but i was stuffed on prime rib. it was over 11 years that i was at Oaklawn. i actually did something for me.

i couldn't get out of bed for the most part all day. i got up just fine and was making jerry the greasy breakfast that he asked for. i want to take care of him. almost finished with breakfast ALL the life force drained out of me. i could barely stand up. i force fed my self a couple bites and went back to bed. i dreamed. probably some of the most vivid dreams i have ever had in my life. i will probably write them in detail for myself. but in general they mostly took place in back alleys and i just didn't care. i remember i might have died. the papers said i did, i even remember my name, which was different, but i seemed alive and continued the the next episode, so to speak. don't know what the little elephant running down the alley had anything to do with it, but i dodged it. i remember my button of savannah and me falling off, i looked at it, and walked away. i did share them with jerry. the last one was a corridoor with offset doors. no numbers. i made note of that. offset doors? who the hell has offset doors? these dreams didn't take me to a bad place. i just didn't care. jerry held me. everything was weird. everything was intense.

i got up and we went to get cassie. i so thought the day would be better. but no. i am so tired. back to bed. never slept. just stared at the empty spot of the wall. not sad, just there. cassie was so good. i did get up because i thought jerry and cassie started bickering about making dinner for me. well, i am sure i f'd it up. i came out to make dinner, but they weren't arguing, just talking. jerry made venison chili for me (my request). i told him I didn't know why i couldn't get out of bed. (actually, the closet sounded better, but i figured cassie would freak) depression, he said. oh. i ate a bit, returned to bed, he packed his bike, and left. i told him earlier in the morning, if the rain lets up he may want to ride back tonight as opposed to tomorrow. i was stunned he left me. maybe it took that for me to wake up. a bit of hurt and anger. i would have driven through a downpour to care for him. but not anymore. how silly we get. i was up when my harley pulled out of the driveway. cassie wanted to pamper me. we watche VH1 remembering the 90s, she gave me a pedicure and a manicure. i wanted to keep my black nails, but she asked to paint the tips brown. sure. i will proudly show everyone this week Cassie's artwork on my fingernails.

i feel so screwed up right now. do i see things clearly? or do i see them all f'd up and very wrong. clarity escapes me. i don't think i could trust my judgment either way right now. entering year two. what all bereaved parents tell me is much harder than year one.

oh, how could i forget...i took everyone to the movies. i wanted to see Douglas Adams...A Hitchhikers Guide to the Galaxy. It was cool. I was probably the only one. i won't ruin it for anyone else. it was funny. after that was when i was so tired i had to go back to bed. they didn't spend enough time on the translating fish you put in your ear.

i did call my mom. oh, how i dreaded that. nothing negative towards my mom. it was me. i didn't want to worry her or pull her down. oh, jerry made it in. i am so glad. i couldn't even fake cheerfulness. how selfish of me. she taught me to be to woman I am, and I couldn't even convey it because i was in no mans land. i think she understood, but i still feel bad. i will have to make it up to her.

i don't even remember mother's day last year. i spent 10 minutes on the floor of my closet last night crying into savannah's robe. cassie had gotten it out to wear one night. i am sure jerry thought i was pissed at him, in the bathroom or something. that seems par for the course now a days. at least he has only found me once. he is attentive, i apparently am just sneaky.

i can't say i had a bad mother's day. i can't explain it. i am not sad. i am not angry. i just exist. i was thinking while laying in bed...hour anfter hour after hour...Cassie is 10 and taking care of me. i smiled. that was WRONG! that is putting her in the wrong position growing up. i have GOT to get a hold of this. she is me all over...born 40 my dad used to tell me. i asked him, what happens now that i am 40? do i revert? hahaha!

savannah and cassie both would have insisted they pamper me. breakfast in bed, with them at my side, eating ALL my bacon and crumbing up the bed. careful...hot coffee!!! daddy, we need orange juice (safer that way). oh mothers day pasts. another one was the week prior to my 10 year anniversary. i had always wanted a diamond coctail ring for our 10 yr mark. mark refused to buy me jewelry (another story). after i saw the prices, i said forget it. i just couldn't justify it. i told mark, i will be pissed if i get a ring for the 10 yr. okay, mothers day, i am presented with a barbie suitcase. upon opening it up there is another box. inside resides a beautiful diamond coctail ring, perfect fit. it is from the children. mark says, you can't be pissed now. it is from your babies, not me. well, how could i be upset? how long ago was that? 1999. i hope his present wife gets that good part of him without the rage. he may have many good points, but he still is not getting the other bottle of wine.

cassie even said something that disturbed me last thursday. i had said that i was so very happy that he was spending time and they had a relationship now. i told her he may frustrate me but he iss a good man. she said yeah, if it wasn't for his damned fist, mommy. i freaked. i didn't even say anything about her saying damn. and i know she was talking about us not them. i guess i didn't do the coverup job i thought i did. it just goes to show you that children see so much. probably even more if they go through a crisis. how much damaged have i allowed my child? hell, she seems to take care of me now, remember?

Mel's birthday is the 10th, Syd's angel date is the 11th, i was divorced on the 13th, my anniversary would have been on the 20th (thank God that's over...but i still hurt). It is going to be one bitch of a week or two.

Friday, May 6, 2005 7:10 PM CDT

it is the day after i picked up savannah's ashes. she was burned, by my choice. she sits here, just six inches from my hand. what does that mean to me? i really want to get drunk! i want to escape. i have for the last couple nights. i did not allow it to happen. i look at the box. i can't really explain the emotion. it is not sadness, at least not on the surface. has anybody ever written this? i want to lose myself and get mean. but part of me wants to be held. to be told it will be alright. but be careful. if it comes from the wrong person, it can backfire. i am going to scare the crap out of everyone, and nobody will leave a guestbook entry. please understand, no one here will hurt me. you are the ones that can say it because you mean it because you continue the journey.

a complete cycle (year) is over. Jerry even forgot her funeral. my heart was crushed. i never brought it to his attention. he does not believe in me keeping up this journal. cassie was attentive to the date. he was busy. and i am hurt.

i got a new cd last night. three days grace. i saw them with evanescence. they are another very angry band. i am liking that right now. it is an outlet so i do not destroy myself or others. one of my demons. why? because i want to! i honestly believe we all go through it. is that why most marriages don't make it? i am spitting my venom.

time to go.

Thursday, May 5, 2005 8:20 AM CDT

Yes, I was quiet yesterday. It was one year ago yesterday that we had a funeral mass to bid my little spitfire goodbye. Cassie asked me for the date yesterday evening, May 4th. She said that is the day savannah was cremated. Yes honey. She had removed her box of ashes the night before and placed it on doilies. She kept checking my eyes to see if I was going to cry. It just seems wrong that your children are brought up in environment where that is common. I do make the choice not to hide my tears from her if she happens across them. She must see how to mourn. Children learn by example. She must learn to release instead of keeping it bottled up inside. That brings about its own problems. And look what she has had to endure at the tender age of 10.

So, you like the new pics! Look closely at the eyes. They are not the same. She is symptomatic. Even though she was deficit free. Cassie made note of her dress. That was savannah’s favorite in that size. She asked if we still have it. I hope I do. I did get rid of a lot. I like the First Communion picture as well. That was savannah’s impromptu first communion. I think Cassie had a panic attack during mass. Yeah, I know she did. After all, I have them, so why can’t I see it in others? Speaking of First Communion…I got the pic of my mothers 1st Communion. I put it in a beautiful frame (as opposed to an ugly one, right?). Remember I had the girls and mine professionally framed together. I hung them all up together in my bedroom. Looks good.

Next Wed is Sydney’s angel date. Sigh! Mine loss should be enough. I get angry when others have to experience what we did. Why isn’t our tragedy enough?! Then I have to deal with BS last night. Made me sick to my stomach. All I wanted to do was return emails. I had made it through the whole day and only cried twice. But the date I never brought up to anyone. I just couldn’t believe cassie knew. I still feel sick. I really need a vacation from my life.

I wanted to add that part of grief is absentmindedness, blond (or senior) moments, distraction, etc. yesterday I think I had one of the worst in my life. I was reading something. I lit a cigarette. That was when Cassie came in and asked me the date. When I went to get my cigarette, I had two going. No recollection of when I did this. And understand, I don’t do this. BUT, it didn’t stop there. 10 minutes later I was still reading. I reach to get my cigarette and guess what? Two lit again. I cussed my scatterbrainedness. I actually had a hard time running my Kiwanis meeting. I was forgetting words when I was talking. And forgot once what I was even discussing. My head really was at the meeting. It just wasn’t working right. Then the worst was somehow I overindulged last night. I have no recollection of taking it to excess. That is not something I ever do when it is just cassie and me. Just can’t go there.

And what an eye opener I had. Some people really think this way. There are certain things that you do not divulge to your children. There are some things you lie about to keep the magic of childhood going, the traditions of childhood. Sometimes us parents must hide the truth to protect our children. Could you imagine if upon diagnosis, I marched into savannah’s room and said…savannah, you are going to die? We will give you treatment but you will still die. Could you imagine? I had to answer questions to savannah such as, when am I going to get better? (you are not) When will my brain tumor be gone? (it will kill you) When can I be normal again? (never) When can I stop chemo? (when you get sent home to die) What do you tell your child when they ask when you lost your virginity? (still a virgin, honey) None of your business? Ah, but this is lying through omission. When your child asks you if you have done drugs? When they ask how much money you make? I was told I am a liar. No different from someone who lies for any other reason. I am no better. Therefore, I can say nothing about those who lie in general. I can have NO problem with someone who lies to me because I am no better than them. It is okay for someone to lie to me because Santa exists. What the F?

Tuesday, May 3, 2005 7:10 AM CDT

LINKIN PARK
BREAKING THE HABIT

Memories concern
Like opening the wound
I'm picking me apart again
You all assume
I'm safer in my room
Unless I try to start again

[Chorus]
I don't want to be the one
Who battles always choose
Cuz inside I realize
That I'm the one confused

I don't know what's worth fighting for
Or why I have to scream
I don't know why I instigate
And say what I don't mean
I don't know how I got this way
I know it's not alright
So I'm breaking the habit
I'm breaking the habit tonight

Cultured my cure
I tightly lock the door
I try to catch my breath again
I hurt much more
Than anytime before
I have no options left again

[Chorus]
I dont want to be the one
Who battles always choose
Cuz inside I realize
That I'm the one confused

I don't know what's worth fighting for
Or why I have to scream
I don't know why I instigate
And say what I don't mean
I don't know how I got this way
I'll never be alright
So, I'm breaking the habit
I'm breaking the habit tonight

I'll paint it on the walls
Cuz I'm the one that falls
I'll never fight again
And this is how it ends

[Chorus]
I don't know what's worth fighting for
Or why I have to scream
But now I have some clarity
to show you what I mean
I don't know how I got this way
I'll never be alright
So, I'm breaking the habit
I'm breaking the habit
I’m breaking the habit tonight

*************************************

I HOPE

I hope you never have to hear the words
"Your child has cancer".
I hope you never have to hear
"The prognosis is not good".
I hope you never have to watch your child
prepare to undergo chemo,
have a 'port' surgically implanted in their chest,
be connected to an IV pole,
look at you with fear in their eyes and say,
"Don't worry Mom, it's going to be okay."
I hope you never have to hold your child while they vomit green bile.
I hope you never have to feed them ice chips for lunch.
I hope you never have to watch the "cure" you pray for,
slowly take away your child's identity, as they
loose their hair,
become skeletal,
develop severe acne,
become barely able to walk or move,
and look at you with hope in their eyes and say,
"It's going to be okay Mom."
I hope you never have to stay in the hospital weeks at a time,
where there is no privacy, sleeping on a slab, your face to the wall,
where you cry in muffled silence.
I hope you never have to see a mother,
alone, huddled in a dark hospital corridor,
crying quietly,
after just being told "there's nothing more we can do".
I hope you never have to watch a family
wandering aimlessly,
minutes after their child's body has been removed.
I hope you never have to use every bit of energy you have left,
with all of this going on around you,
to remain positive and the feelings of guilt, sorrow, hope, and fear
overwhelm you.
I hope you never have to see your child's head bolted to a table
while he receives radiation.
I hope you never have to know what it is like to take your child home,
(grateful but so afraid)
in a wheelchair because the chemo has damaged their muscles,
35 pounds lighter,
pale, bald, and scarred.
And they look at you with faith in their eyes and say,
"It's going to be okay Mom".
I hope you never have to face the few friends that have stuck by you
and hear them say,
"Thank God it's all over"
because you know it never will be over.
Your life becomes a whirl of doctors, blood tests, and MRIs,
and you tye to get your life back to normal
while living in mind numbing fear that any one of these tests could
result in hearing the dreaded words:
"The cancer has returned".
And your friends become fewer.
I hope you never have to experience any of these things,
because only then,
will you understand.

Carol Baan

Carol allowed me to have this read at Savannah's funeral. It was the first thing Fr. Charlie read during the homily. It hurts, but it is nothing but the truth. None of us parents ever wish this on another. But no one can possibly understand what and how we lived unless you journeyed in our shoes. This is why I grip so tightly to a chosen few. Only they truly understand.--------------------

John Mayer

Your Body Is A Wonderland


We got the afternoon
You got this room for two
One thing I've left to do
Discover me
Discovering you

One mile to every inch of
Your skin like porcelain
One pair of candy lips and
Your bubblegum tongue

And if you want love
We'll make it
Swimming a deep sea
Of blankets
Take all your big plans
And break 'em
This is bound to be a while

Your body Is a wonderland
Your body is a wonder (I'll use my hands)
Your body Is a wonderland

Something 'bout the way your hair falls in your face
I love the shape you take when crawling towards the pillowcase
You tell me where to go and
Though I might leave to find it
I'll never let your head hit the bed
Without my hand behind it

you want love?
We'll make it
Swimming a deep sea
Of blankets
Take all your big plans
And break 'em
This is bound to be a while

Your body Is a wonderland
Your body is a wonder (I'll use my hands)
Your body Is a wonderland

Damn baby
You frustrate me
I know you're mine all mine all mine
But you look so good it hurts sometimes

Your body Is a wonderland
Your body is a wonder (I'll use my hands)
Your body Is a wonderland
Your body is a wonderland




-------------------------------------------------------
enough of me.

we had a wonderful weekend, under the circumstances. i did read the posts. a couple people suggested a book? hahaha. what is so funny is Sunday night I actually started writing a story. i couldn't sleep. christy read it and it passed...except the sentence I ended with a preposition. I told her that is what editors are for. actually, i probably would have caught that when i got serious. if i actually finish this short story, it will go to her, for her dream book.

saturday jerry left to do some errands and invite Lisa C over. Cassie and I took a shower together. I got to wash her hair. man, that girl may have hair thicker than mine. I enjoyed it immensely. I got to condition her hair and wash her body like when the girls were smaller. there are parts that they have to take care of as they get older. but i was able to study her back as i soaped her up. i got to run my hands across the smooth skin on her arms. oh, to be a mother!!! we lotioned and powdered up afterwords. cass had powder everywhere. i easily could have got frustrated but made a conscious choice to enjoy the mess.

Jerry returned with a gift for each of us. decorated egg jewelry boxes. they are beautiful. i opened it up. it reminded me of a casket. the white lining, the same as in Savannah's. this little casket was empty. my heart sank. then i thought an egg symbolizes life. a jeweled dragonfly was the cover. it's wings raised from the shell in flight. of course the casket should be empty. she was reborn to the heavens. wow! remember that is how I introduced death to my child. And she became obsessed with dragonflies. cassie's is so cute. the pedestal on hers is dolphins. how perfect. hers does not play music. mine plays the song from American Tail...'Somewhere Out There'. everything about these were perfect.

we were busy all weekend. the livingroom is finally completed. i have our family picture and the Amy Lee picture hung. The crystal is finally on the chandelier. It took Jerry and I over an hour...very frustrating. but when it is on, the reflection through the glass in my china cabinet produces dancing rainbows. i got the cord a round cut and placed. Cassie worked so hard on one of her Girl Scout badges. And she colored a unicorn. we dined on Savannah's favorite bratwursts for dinner on Sunday. they are the ones served at Grant's Farm.

Time for work.

Saturday, April 30, 2005 1:42 AM CDT

Sunday nite

we are okay. actually, mommy has been in a good place. i did want to share two incredible things that happened yesterday. cassie and i finally got to get into a package we received. it had instructions given prior...do not open until the 30th. within it, two bottles of wine labelled for Savannah, in her honor. i could NOT speak. I did use a woman's perogotive. One bottle was for the 30th. another was to keep for ME. selfish? yes! when i do not think i can be humbled more than i have been...bam! My most gracious thanks to the PC clan for giving me such peace and joy on the most dreaded of days. yes, i felt the breeze. and i admit, i am in love with a sweet wine. never thought i would say it. and cass immediately dove into her fuzzy marker poster.

the second came when Lisa C came over. it was late. i had saved her a glass (that was really really hard for me). she brought me a gift. it was a statue of the three dancers. she said one evening she stopped by. at the front door she saw us dancing together in the livingroom. a little girl on each of my arms twirling. 'and by the way, lisa, they weren't wearing underwear'. 'i was'. 'yeah, but the girls weren't'. i just had to share that because of my previous entry. i laughed and laughed. 'you caught us in a naked party'. 'apparently, so'.

we move on to the next day. the 29th was much harder on me. i am dreading the 4th (her funeral) and the 5th (the day her ashes were returned to me). remember one day at a time. it has now been a year. i can honestly say, it is no longer one minute or hour at a time. healing. i do feel arms around me. and somebody quit breathing on my neck! it's driving me crazy.
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This is for my Savannah Phoenix, who never knew her mommy had a life other than being her mommy. Thank you Carol giving me the inspiration. This is also for you and anyone else who is curious as to why I am a strange character.

I was born in STL. The day after the Assumption of Mary. A Leo. The eldest of three children. We lived in a one bedroom 4 family flat. My siblings are 18 months and 29 months my junior. On pure accident and nothing to their name but a dream, my parents bought a 2 family flat. My bed was a pull out sofa I shared with my sister. I remember stark walls. But to this day when I am sick and in bed, I am transported in time back to then. I hear my mother doing housework as I lay under quilts. The greatest feeling of security and love with complete dependence upon my mommy. The best feeling in the world.

Times were very tough, but us kids did not comprehend how poor we were. We moved to Germany. I was 7. Zweibrucken was our new home. I remember eating fried onions on the best bread in the world. We lived in the maids quarters, us kids thought that was cool. We began to travel Europe, on the weekends, and then on real vacations. They were all budget vacations, we ate out of cans, but vacations none-the-less. We castle hunted. Walked ruins. Were drug through countless museums. Saw the Pope deliver Christmas mass. I remember being photographed my tour buses of Japanese. That still causes family laughter. That we were probably on billboards all over Japan was the joke. It must have been the red hair. My sister and I have completely different types and color of red hair. We were in pink ponchos my mother crocheted (she handmade everything). It was the 70s. My mom kept telling them we weren’t German…didn’t matter, they wanted our pictures. Probably didn’t understand a word of German or English anyway. We moved the Heidelberg the following year. The 1972 Olympics. The first international terrorist attack. Lockdown. Vehicle searches. The massive guns everywhere. The barriers went up. We became caged. The license plates had to be changed. The bombings in establishments frequented by Americans. My mother had just returned to work as an RN. She had to leave Patrick Henry Village to get to the hospital. I was terrified she was going to die EVERY day she left to work. Don’t know why I never felt that about my father. They actually had bombings in the base he worked at. I lived it. I lived it through the eyes of a child. I lived it on a military base. Except for a select few in this country, Americans do not have a clue what it is like to live in utter fear. For that was and IS war against Americans.

We returned to STL at the end of 1974. Into a new house. My parents accidentally again bought a house they couldn’t afford. It remained cold in the winter and hot in the summer because the energy bills were so high. My mother was a genius with making a meal out of nothing. We started at a Catholic school. Being the new kid from Germany, I began to get teased, horrendously. I would rather be dead than red on the head. Called a Nazi. For three years I endured this torment. I actually understand Columbine. The only thing I didn’t understand was the indiscriminate killing. I chose to go to an all girl’s school in order to hopefully escape. It worked I guess.

Home life fell apart. My family will shit and be pissed over this. My sister became so angry. My brother so lazy. My mother worked nights so an adult was always at home. I was in charge of my siblings while she slept. They resented me. I guess I was bossy. Dad just worked all the time. We went to counseling. Pissed my parents off. We quit. My father moved back to Germany in Jan of 81. I took on many duties. I had to become an adult. I shopped. I took my mom to work and picked her up. Before I go on…take note…I have the best family in the world! Times were tough. They did the best they could. They gave up everything for themselves and got three kids through college. Kudos to my mom and dad. And we were just kids. We wanted this. It isn’t fair we can’t have that. Our friends have it, why can’t we?

I remember one time I was shopping in the am. I had been stretching $20 into a weeks worth of meals. The woman in front had ribeyes (4, I was eying them). She paid with money I never saw before and got money back. I was confused. I was introduced at that moment to food stamps. I was pissed. To this day I am pissed over that. We could afford nothing but ground beef or meat reduced for quick sale and this woman got a real steak.

My family followed my father to Stuttgart that summer. I still had one year remaining of high school. I left the nest early for my education. But I was going to take calculus, I was student teaching both algebra and geometry, and I was taking a computer class (only two schools in all of STL had that). My parents sacrificed a lot for my education. I lived with my grandparents. Their only rule…keep your grades up. I know I am a freak. I found the Rocky Horror Picture Show. Weekly shows I became a part of. A family of freaks, early Goth and a lot of fags. We were good kids, no drugs, stayed out of trouble. We were just weird. Shock value, maybe. U-City and the Central West End. I got my first real boyfriend. I was 17. Yeah, late bloomer. My grades became straight As. National Honor Society. Very strange I thought.

I somehow made it in to UMR. Didn’t really know what I wanted to be when I grew up, but I had very high math grades. What the hell? Get an engineering degree. I found my freaks immediately. The hippies/nerds/geeks/druggies, the Independents, the God Damn Independents…aka GDI. Most all of us, outcasts in high school. Smart but different. We found each other. I became active in several ways.

I always loved music but knew nothing of it, so I took a chance and became a DJ. I trained under Mark Hurley, a DJ I religiously listened to for over a year. It didn’t take long for him to move in. And my life journey with him began. I became trainee director, production director, and ultimately program director. I DJ’d my show, shared a show, did artist feature shows, bluegrass, and jazz shows. Mark started the road show. This was early in the days of DJing weddings, parties, and such. We did this almost weekly. Honestly, I don’t know how I managed to graduate. I have to study. School was not easy for me. But I did graduate (no honors), but I made it out of a very tough school with a job. I didn’t even have to say…do you want fries with that? During my final year I developed acute panic attacks which I will fight for the rest of my life. But that is for another time.

I moved to Arkansas. The Arkansas River valley nestled between the Boston and Ouachita mountains on Lake Dardanelle. I live here still. We bought our starter home upon arrival. I was 22. We set down the drugs and began real life. We camped, hiked, gardened, home renovated, worked long hours, and had common goal and dreams. We were happy and loved each other. We married 5-89. We took wonderful vacations. We bought my present home and began to climb. Mark lost his mother, and I, one of my closest friends, on 3-2-92. Our troubles began. Grief is very hard. But I was determined that we make it. Counseling, proper diet, exercise, get-a-way vacations.

I had Cassandra on 3-2-95 (note the date). After a miserable pregnancy, I had a demanding preemie, and I didn’t have a clue how to be a mother. Because of her personality, we became very close (basically, I couldn’t escape her). She was my focus, my life, we had fun, and I learned more than I had in my entire life. I learned all about breast feeding, baby foods, RSV, jaundice, ear infections, etc. College was easier but much less rewarding. Life was so very different, but I adjusted. I was in love with my child.

Two years and one week later, Savannah entered the world. Different in every way from her big sis. She was easy with one exception. No body could get her to sleep unless she was next to me. Of course, I may have started this. It is a whole lot easier when you nurse your child every 1 ½ hours throughout the night, to just put a breast to her mouth when she roots. I actually slept, and so did she. Being mommy was the most natural thing in the world then. Lisa had changed. I loved children now. I couldn’t stop touching my children. We would have naked parties (that sounds awful, but it wasn’t). When daddy would be hunting or working, after their bath, they would balk at clothes. I would say…do you want to have a special naked party because there are only girls here. The excited shrieks would start. Naked they would giggle and run through the house. We would have tea parties and play Candyland. We would eat snack and read books. We would paint and play with playdough. All while naked. Understand, I didn’t partake, much to their dismay. They would beg me to be like them. Looking back, I should have joined them. It was female bonding at its finest. I also remember doing fun stuff when Mark was gone. I would make ice cream sundaes for breakfast for the girls. He would sh*^ if he knew this. He had become a demanding health nut. We girls became a special club as he drifted away. We learned how to walk on eggshells. It got to where the girls would ask when he would hunt or work next because they wanted to do something fun. We would play with Barbies prior to 6:30 because he would blow a gasket if Barbie stuff was on the floor. Hence, he would tell everyone they didn’t play with Barbie’s. It was out little secret, I suppose. Reading what I just wrote, it looks like my daughters and I had to start keeping many secrets. Sigh! But life with my children was heaven. I worked no more than eight hours a day and rushed to pick them up. Ups and downs but basically life was perfect. I had a strange sense of foreboding. Life was too perfect. I told people the other foot will fall and just can’t see from where.

I was handed, what I called, life shattering news from my husband in front of my brother the day before his 40th birthday party. My life with my husband, I felt had been a sham. I was crushed. But what could I do accept go on. So I did. Now he got so upset a few days later, he blew up and attacked me because he was scared of retribution. Mind you, I was sleeping when he started breaking the new computer apart. There were no fights, there never were. And the divorce was underway. Honestly, the split had nothing to do with the news he gave me, only the weapon. I was strong enough to handle the rest. I had failed. I still think I failed. Somehow, I could have been a better wife. I should have seen what I never did. I was divorced. I referred to it as NOT the big D but the big F for failure. But I know in my heart he needed to be gone in order to start the journey to Heaven for my youngest daughter. I had to regain personal independence. I had to learn how to stick up for us and fight for us. I was about ready to begin the fight of my life.

The fight to give my youngest child a lifetime crammed into a few short months. The fight to give her death dignity. The fight to show her that she was loved beyond comprehension. We won. Savannah died. We did good. The world did good. Mostly, this brought out the best in people. The worst in a few. But I know that is because the pain of loss is severe. It hurts but that knowledge makes hate not possible. I went through a small fortune. I accepted help for the first time in my life. Savannah was on a type of welfare to help with her medical bills.

We live in the greatest country in the world. We have the best medical treatment in the world. This era in history is the most humane, caring, protective of live, protective of children, and protective of others. The human race may still have a long way to go, but I am honored to be a part of today. My child still died at the age of seven. Shit happens. It is nobodies fault. We all did our best with what was handed us. Cassie and I start anew. No regrets.

I have written this before. If I were to join Savannah tomorrow, I would have lived a wonderful life. Love, the greatest of all gifts. I grew up with it. Shared it. Gave it. Created it. Accepted it. And I live it.

My life is not easy but it has been good. It is extremely painful, and I fight demons daily. I have the best family and friends in the world, and many of them. I am a very lucky woman. I have two children who lived and breathed mama. I have a man who adores me. I am loved.

Happy Angel Birthday Sweetheart.

Mommy will never stop loving and missing you.

Forever yours,
The happiest woman in the world because you called me mommy.

Friday, April 29, 2005 12:47 AM CDT

She awoke and looked at me. Jerry laid down in the hospital bed with her. I went to smoke. She began to jerk. I rubbed medicine on her. We put in her favorite movie, Spirit. I called the hospice nurse. They became stronger and wouldn’t stop. Susan had just gone to bed. Even the hospice nurse said it was cruel to allow her to die this way. I called the ER and said we were coming. They met us at the door. One of the nurses knew savannah and I from children’s hospital. He had sat with her a couple times the year before during an admission so I could take a break. He asked if we needed a wheelchair, stretcher, help carrying her. They had a table set out prepared for her. He along with another nurse pounced on her. Her pulse was over 200. They gave her even more lorazapan. Nothing. She was past the max dose for an adult. Nothing. They gave her dilantin (maybe, I am kind of fuzzy now). Nothing. A little more. Finally. Heart rate slowing down. In the 180s. I remember thinking, her heart could give out. I have a signed DNR. I was going to allow my baby to die. Part of me wanted her heart to stop then. Part of me said NOOOOOOOO. Not yet, it is too soon. It will ALWAYS be too soon.

Susan stayed with Cassie at home. I called her father and told him. I asked if he was coming to the hospital. No, just call me in the morning and let me know how she is. I was stunned. The nurse asked me when I hung up how long it will be before he gets here. I said he is going back to sleep. The female nurse said something not so very nice and thanked Jerry profusely for being there. The nurse we knew said, yeah, I remember from a year ago. We were admitted. I crawled right into the bed with savannah. I wished there was room for Jerry. I even told him that he could lay with her. No, he said. That was my place.

Savannah never woke up.

Mark stopped by in the morning. Susan went home to STL. Cassie went to school. It was wed 4-28. Mark said Cassie is breaking down. She needs you. He will stay at the hospital if I take her. (that was tues) At this point I knew savannah was in another world and it was okay to leave and tend to Cassandra. I am still okay with that. Thurs after being at the hospital in the am, I went to work as did Jerry. The hospital and mark forgot to give her the steroid wed night. Her brain swelled around the tumor. If I remember correctly, she began to vomit while the pediatrician was with her. He ordered antibiotics. She continued doing this throughout the day. By the afternoon, the dr had determined her stomach was shutting down. Aspiration pneumonia was the fear. I had not heard from Mark all day. I did find out later he had left one message on my work phone about it. By late afternoon Savannah’s lungs got bubbly. Aspiration pneumonia has set in. jerry went directly to the hospital at the end of work to take over from mark. I went home and started packing for the end. I had hospice on the phone. I needed baggies, scissors, cameras, clothes, and stuff for jerry and I because we were not going to leave the hospital until it was over. I had not only to watch her go. I also had to prepare her after. Don’t know why I needed to do this. Just one of those things. I needed to get it right this time.

It has been raining all day. I got up to hail this morning. It rains hard then soft but always continues. It is perfect for today. Throughout the world, people are mourning. Some times heavy, sometimes lighter. Today is my big grief day. This is the day I watched my child die. Her heart stopped at 12:10 am tomorrow morning. Heaven got a spitfire.

Wednesday, April 27, 2005 7:05 PM CDT

Thursday am
I have always loved this John Mayer song. The new bottom song. i am sure everyone knows it. When I hear it, I think of motherhood. I realize the song isn't written in that context, but I think it fits. Some company should use it in a commercial.

Have you ever just spent the afternoon just playing with your child...discovering eachother...a tea party she set up for two? a mommy knows every inch of her child's body. it is permenently etched in her mind. the sweet breath of a baby. the gentle kiss from the sweet little lips.

have you ever got out blankets and made an inprompto tent in the livingroom? how about all snuggled up for bed and have tickle time and kissy time rolling around under the covers. Can you hear the little shieks of laughter? stop mommy, stop mommy, do it again, noooooo.

we know exactly how our children look as they sleep. the little bit of hair that refuses to stay in the ponytail. i still see my toddlers climbing up into the bed. climbing across who is already there finding a place to nestle in. you move your body to accept their little frame squeezed in as tight to you as possible. 'damn baby, you frustrate me'. your heart is exploding with love. it somehow is not containable but yet it is. it does somehow hurt, this overflowing. have you ever cried because you were so happy, because you were in love with your child? they belong to just me, at least for right now. It brings a tear to my eye even as I type. The love for a child is the most intense emotion in the world.

So that's why I think this should be a commercial. life insurance would be good.
________________________________________

today was a good day. i felt refreshed. carol gave me an idea for saturday's post and i worked on it this evening. i though about it all day. even though i wore all black, i was in a good place.

today was the last builders club for the year. i made a list of things they did this year. i am so proud of this group of kids.
-made cards for make a child smile kids
-collected items for the soldiers and boxed them up
-made cards for the soldiers
-painted trashcans for the school
-walked dogs at the animal shelter
-worked at pancake day
-set up for the underpriviledged childrens christmas party
-saves tabs
i had more stuff listed earlier but i forgot.

i left and went to girl scouts. as i was walking in, i saw the girl's kindergarten teacher. she thanked me for the buttons and said, i will be thinking of you on Saturday. OMG! she remembers what saturday is! I had 100' to have my wet eyes dry up. she was an angel at that moment.

jerry is coming in tonight to see cassie and he is now here so i will sign off for the evening.

Sunday, April 24, 2005 7:32 PM CDT

less than one week. i type with my hand resting on the ashes of my daughter. i wonder, would she be proud of me? would she be mortified? i am no longer the person i used to be. i am more compassionate yet cold. open minded yet critical. i reach out to others but have become numb and no longer really give a shit about myself. i was told before all this began to open my eyes. they are. i see what i never noticed before. i can see the purity and i see the demons. i hold my daughter as she sleeps with the most tender touch only a mother can have yet i know i have a monster inside of me.

christy, my girlfiend who watched savannah for a couple months so i could work, got me some black nail polish. i have gone into mourning. hahahaha! i remember hanging out in U-City(for all you Nelly fans, i hung out there LONG before he did) and the Central west end. i was 17. i wanted black nail polish. i searched everywhere. little did i know it would many years later be called Goth. okay, that's off the subject. black. that is where i am. black. to all who will see me, they will not know unless they happen to notice the consistancy of black. but honestly. people are not that observent. i need to spend tomorrow night on the phone so i don't have to answer the phone for the rest of this week.

i read the most amazing nonfiction yesterday. i am speachless. my life and tradgedy are nothing. of course, i knew this before. my mom was a war baby...running from the soldiers, leaving her mommy's corpse behind without burial, being taken by a father she did not know and shipped to the US to start a new life with no person she knew. my godmother and greatgrandmother escaping a concentration camp the night before they were scheduled for execution. my grandfather, almost shot because his last name may have sounded jewish. my heritage. and people say I don't know? why? i am tired of typing.

Wednesday, April 20, 2005 9:19 PM CDT

due to an email i sent earlier in the evening, i started to read the journal history. first, i really wish i had spell check at home. it looks like i wrote these entries drunk. okay, i can't type worth a crap. i made it to sept 15, 2004. i wanted to comment.

first...savannah was NEVER savannah again after diagnosis.

the swimming party. childrens would have SHIT if they knew i sent her to swimming lessons in a public pool, tegederm or not. this is one of the reasons they don't like me there. and i don't ever remember her vomitting the day afer chemo when she was with mommy.

sign...liam and leilani. my first angels. always to be my angels. you will live as long as i am here. i was berated then for following dead kids stories. screw all those who i shared their lives with. i was told i needed to not look at what happened to them but to live for the present. where would i be today if i did not have the knowledge they trusted me with? god bless them for sharing. it is because of them that i am sane! crazy, maybe, but i am sane!

the doll. i still have it. our poor kids. they see. they see that mommy and daddy have a hurt they can not comprehend. yet, they are not privy to it. i thought i hid it well. that child could SEE INTO MY SOUL. a gift given with a lemon size tumor in her brain stem(which should be the size of a pencil). ALL THESE KIDS ARE BRILLIANT. what does this tumor open in their mind?

My grandmother. i actually heard that i had not dealt with her death because i did not grieve as the others. damn! i was cold beause i did not cry? my daughter was dying. my grandmother lived a full FULL live full of admiration and love. i hurt. i miss my oma today. but it was natural. she was an old woman. young in my eyes but still old. yet, that one line, i hear in my head to this day...you haven't dealt with it yet. if that is the case, i still haven't. it will never minimize the love i have for the woman who my childhood memories remain with.

Godspell. how many realized what was played at savannah's funeral was the song i mentioned all those months ago. 'where are you going, can you take me with you?' the tears i shed then never stopped. i still listen and cry. 'where are you going?'

oh, the other round of pain from those who thought i was pessemistic about her illness. she is better...blah blah blah. at least i knew better. then her getting skinny and me knawing on her. she got a little tiny flabby belly. i couldn't stay away from it. i kissed and chewed on her all the time. what i didn't write before was that she would want all us girls to sleep naked together. what the hell. the steroids create a sensitivity to the skin which she never got over. hell yes, we slept naked together and there is nothing sick about it at all. i birthed my children. i was naked when they cme out and they were certainly naked when they came out. she wanted to be naked again? so be it. was it a comfort to have momma's naked breast on her back? the way it was during the first years(yes years) of her life? was it preparing to go back to her creator?

because savannah lived longer than EVER anticipatied, mark started to back me. he left all research to me, but he DID back me.

the psychosis, i learned (from a breast cancer patient) was physical pain from toxic crap pumped into my child's blood stream. much further down the raod, i learned tylenol upon chemo completion eraticated psychosis. pain was all it was. not nausea. i kick myself again.

my 39th birthday was my best ever. i had a friend of mine, in bad drag, dance for me. if i am brave i will put up a picture. i was tied up for this performance. now that was a party. jerry was there, but he thought i was a lesbian. thanks laura! but i do understand, i was to be protected under any circumstances. protected from any suitors that could easily take advantage of a distraught female. it is funny now. i admit, i was a bit ticked off, yet alone shocked when i found out. still, best birthday i ever had.

my ashley. my miracle girl. she got her wings on jan 1st. my baby. she was to be the first! damn it!!! her mommy, Norine, held my hand. i can never repay her for that. until i die, i will try.

i did allow dex. but i did honor what i wrote. never would it be high levels again. i even fought to get into hospice.

i need to write one day about when mark and i were in a happy relationship. when i would say...it is too perfect. apparently i even said this to my dad. something really bad is going to happen. everything was too perfect. love, comfort, health, and money. i had no idea. who did? who can fathom?

the love of my life was introduced to my writing on sept 8th. who would have known where this simple friendship would go? the 7th is when i had the worst beakdown i have ever had. i had the kids. i had always been able to control them until that day. jerry was a new friend, but we connected as friends. he had promised to go to the movies that day with his aunt. i wanted to call him. i was in fetal position and out of cigarettes. i really needed a padded cell that day. i somehow managed to call audrey and she brought me a pack and sat with me for a couple hours as the children played. turned out, jerry was on a date. keep up with what you share. i am not stupid. honestly, i didn't and don't care. it is just as well that i couldn't get a hold of him. my breakdown would have scared any man away, friend or not. i still remember it. the girls, for some reason, were actually content watching tv. they didn't bother me for hours as i slipped further and further away. it scared me because i couldn't be a mother that day. i had lost control.

agghhh, the cancer picnic. go forward over 1 1/2 yrs. at the christmas memorial...there was a picture of another little girl at the survivors picnic. it said new friends. this parent, who picked out this photo, did they have any idea, that their child's new frind was my daughter? did they know she was also being honored in death that day? these two children DIED!

enough for revisiting for one night.

Monday, April 18, 2005 7:53 AM CDT

tues am
not in a whole lot better place. i have to go out of town today and tomorrow. my lower back is hurting me and i have another shooting sinus headache. i am dreading this. but on the good side, i will see jerry. he actually ASKED if i wanted to go ride. i normally love quite road time, but not when my body hurts.

pm
when you get severely hurt, you become bitter. at what point does this change? do you have a right to be bitter? i think so. healing is not instant. healing taking a long long long time. i pretend so well. all around you is deceit. tossed out for you to knibble on. i was betrayed. i am being betrayed. that takes a long time to get over. whether it is from God or from a man or a woman. i am hurt. i am angry. all i want to do is sit in a corner...conceed...cry...and disappear. i am tired of fighting. i am tired of being hurt. all this shit of God. he took my child. he made my life a mockery. i existed for my children. ask anyone who knows me. i was a good mother. i am a good mother. my child was stolen from the world. i am pissed. my living daughter's sister and best friend was stolen from her. i fought so hard to give quality, to give her life. I gave everything of myself for my girls. i gave everything for my family and that was tossed aside with a fist. i was betrayed. I gave everything to my family and was met with nothing but lies. i was betrayed. and then put in my face. PUT IN MY FACE! i gave everything. i am and was a good person. human yes. but i strove so hard. i turned down so much to be what i thought God wanted me to be. what others wanted me to be. what i was taught. a concious choice. choices others would have made and then confessed that they were human and went on. i still do and it makes me sick. what kind of a joke have i been living as an adult? Is everyone so selfish that they do not see the damage they create? am i that way too? have? i become that way? is God that way? afterall, what a joke he played on me! what a joke he plays on all us dpg mommies and daddies. human nature is to suck up for a while then return to themselves. is this what is going on? crap, my family and friends who read this will take it personally, and it is not meant to be personal!!! can you say...Lisa is not in a good place?

i tried going back to church in the beginning. it didn't work. i still can't go back. not right now. at least i don't make alse claims.

there is such a miraclulous side fighting me. at build a bear...one of the girls on her own came to me and asked how i was doing? a 13 yr old. what compassion. she hugged me on her own. she asked for one on the buttons ms sent me. hell, jerry doesn't even want one, but she did. it was all i could do not to cry in front of her. someone else approached me last week. she told me she heard someone ask for special prayers for a little girl named savannah and her family. what about the acknowledgement from GKTW I received today. Jennifer and Bryan donated in savannah's name. shit!!! they remember (that is a big thank you, cussing and all). they remember and acknowledge. not just a hug because they read the site and therefore know what day it is. because they remembered and cared enough on their own. prior, would i have been that good of a person? i wonder. probably not. it is the striving thing, remember.

i have reached out to others to try to repay the kindness to me and my children. it hurts to do it. damn it, it hurts. but i learned life is hurt. and i have an obligation. i have been berated. i need help. i can't move on. well, f you and rock you crawled out from under. i hurt enough for everyone else. if i can answer a question, if a can make a child smile, if i can cry or laugh with a mommy, and if i can bleed my heart for another, is it not worth more than serving dinner at a mission once a year? and I am critisized? I just don't get it? why can't I get it?

my daughter wants me to go to bed and i will. thanks for allowing me a venue to vent.
------------------------------------------------------------------------------
another wonderful weekend. jerry and cassie fished a good portion of it. she helped me out quite a bit to pay off the extra $13 she spect at her GS function. Then she made more money yesterday helping Jerry. I didn't build a bear. i did help some of the other kids though. and that is more important. Cassie and i cooked all day yesterday. we sent jerry home with a bunch of food and we have over a weeks worth to eat. we all worked all day then watched tv and played poker as a family at night. can't have it any better than that. okay, if savannah was with us, that would be better.

i woke up at 11pm last night with a sore throat and drainage. then an hour after i got up this morning the sinus headache began. part of what we have to deal with living in God's country.

280 hours remain until the anniversary when my daughter left this world. i am not sure what we will do. cassie will be with me that weekend.

please pray for all the other parents who have had to prematurely bury their children. there is no greater pain on earth. and pray for all the brave young warriors who fight for their lives on a daily basis. thanks!

it is going to be beautiful here all week. highs in the 70s to 80. can't beat that!!!

more old entries below--------------------------------------------------------------------------------------------------
7/07/2003


Midsummer Update All goes well with the Hurley’s. Vacation to Florida is over. We had a blast. A very special thank you to Ed Buckley, who purchased the plane tickets for Savannah and Cassie. Jeanne Callanan obtained tickets to Sea World including a ‘behind the scenes’ meeting with a whale and penguins. Busch Gardens was generous and donated tickets to us through their compassion program.
Due to this overwhelming generosity, the girls and I were able to enjoy a relatively stress free trip. No hospitals…no chemo…just fun. We returned to Give Kids The World, Savannah calls it ‘the Village’. Savannah was able to enjoy all they had to offer much more extensively. She acted like she owned the place. She used her birthday money and purchased a stone. It had not been placed yet, but we did relocate her Wish Star on the Castle ceiling. This organization has my heart.
Shingles!!! She came down with shingles while on vacation. She hurt badly. But thank God, she is over that now. I didn’t know they had meds for it now a days. Savannah is relatively symptom free right now, and down to 47lbs.
She saw her kidney dr last week…she has only one kidney stone remaining. Hurray!!! Her quarterly MRI was the day after we returned from vacation. The tumor is different…I can hardly call it stable. Parts show enhancement…and the fingers now look necrotic. The official results say it is smaller, more necrotic, and defining lines gone. This is a good thing.
It did mention solid tumor, so again confusion strikes me. How can a diffused intrinsic tumor be solid? Does this mean it is atypical glioma? Or still typical? Always a learning game. Keeps me researching.
The MRI spec is relatively the same at the last MRI. Still shows cancerous tumor, but stable levels from last time. Time is a gift, yet time is an enemy. I wait for the other shoe to drop. It will, but hopefully this tumor is now responding to the chemo. I feel the terror flow through my muscles and the tears still come daily, but it is much better now.
Oh…my hair is gone. I had a 14” and 13” ponytail cut off for donation. This was per Savannah’s request. I am still adjusting to very short hair. The grays really show…but that’s okay. I EARNED every one of them. Plus at almost 39 yrs of age I am due.
The girls spent the 4th of July with daddy. I went home to visit my grandmother. I did hurt because I wasn’t with Savannah over this holiday. I thought about her nonstop (okay…I always think about her nonstop). She is such a patriot. She gets so passionate when she talks about her country…at age 6…go figure.
She still talks about throwing food at and beating up the Dixie Chicks. (I did give her permission) God love her spunk. Yes, she has an assertive streak. Doesn’t put up with crap from anyone. What a wonderful quality to have. My baby is back.
She has a sinus infection right now…just like me. It takes her a while to get over things. It seems she is constantly on antibiotics for something. Late August she sees an endocrinologist. Hopefully, they will test her for secondary adrenal insufficiency. If she suffers from this condition…it will explain her mini illness after mini illness and her inability to kick it fast. It is a side effect of prolonged steroid use and can be fatal in a crisis situation (including stress). And it is treated with…steroids. LOL! We will see. I would love to be proved wrong. PT and OT still continue.
The girls both want to take swimming lessons. I HAVE to fit that in. Continue the prayers please…I see them working.

Lisa Hurley
6/19/2003


guess who's back? savannah's back...back again...savannah's back...tell a friend...guess who's back...guess who's back...guess who's back...guess who's back...NOT...we do miss y'all but we are having way too much fun.
Today we spent in beautiful rainy Florida weather at Sea World thanks to Mrs. Jeanne Callanan. Hugs and kisses to you for you gift. We were drenched, but it was the warmest rain I have ever been in. Kids all wore ponchos, not me. But for those who know mommy, know I have a passion for being out in a gentle rain.
Ha! Met whales and penguins. Bundle has even given the shopping bug to mommy. Peyton joined us on our Orlando vacation. More on other events later. Oh, got another opinion today. Same!
Oh, and one more thing. Savannah will be a featured kid on www.Makeachildsmile.com during the month of August. LOL! She really did. Love to all...the hurley girls.

Lisa Hurley
6/17/2003


Vacation report.......We left Tuesday night after chemo and drove 11 hours in a rented mini-van. Vicki took the first shift on driving as I had already driven 160 miles for chemo. The PLAN was to leave in the evening so the kids would all sleep. Cassie and Heather did fine, but Savannah slept in short stints with the now expected Dex induced psychotic episodes...so much for an easy drive.
Savannah did well when we brought her to the front seat to sit in our laps...she would fall asleep and we placed her in a rear seat for an hour when she woke up again. It became a routine for the night.
We made it to Gulf Shores at 4:40 am and went straight to the beach. The sky began turning pink in 10 minutes and we stayed for the sunrise. It's hard to beat the sound of the surf and a stiff breeze. We were all in heaven that morning. We stayed in a beautiful 9th floor condo at the Phoenix on Orange Beach.
Savannah was her normal self....she sat in the edge of the surf and played with her beach tools. I put on her life jacket and took her out in the waves. She did fine as long as I was holding on to her.... She did not realize that she floated like a cork with the ski style jacket.. that made a world of difference.
Vacation basically went along the lines of play in the surf, eat, play in the surf, shop, play in the surf, waterpark, and play in the surf. The water park near Gulf Shores was a lot of fun on Saturday. The girls were all wore out for a nice relaxing drive home on Sunday. Hope we can do it again soon.

Mark Hurley

Friday, April 15, 2005 10:58 AM CDT

i am waiting for a bunch of stuff to print so i thought i would post my entry i did in the wee hours of this am.

I had a wonderful evening last night with the Young’s. I have to share a story which I think is funny. I took a special bottle of wine to share with a special couple. It was sent to me by my angel family in Utah. We needed to not only enjoy it but to give an honest opinion of it. It was a ruby red grapefruit wine. Okay, it wasn’t very good. Not that any of us are big wine connoisseurs. You must understand this. So we read the label. It says it should go well with salads, pasta, lamb…none of which we were having. But then it said it goes well with garlicky foods. Well, I happen to like garlic. So I say…Christina, got any garlic? Yeah, there are bulbs over there…no, I don’t want to chew on a clove. I like garlic…but not that much…got any powder? She looks and finds some. Well, let’s see what garlic does?

I proceed to dump garlic powder on my hand and lick it off allowing the flavor to penetrate my mouth. Then I take a drink. It was good. It was really good. I tell her to try it. Now I am giggling. She tries it and concurs. She calls Dave in and tells him what we have done and how good the wine is now. She then proceeds to pour garlic powder directly into the glass. So I do the same. We stir it in well and drink the wine. So my honest opinion of this flavor…if you are going to lick or chew garlic, it is the perfect wine.

Prior to this I find out Dave cannot have grapefruit. It reacts with his medicine. Now this I have never heard of before but apparently it is true. I felt bad for him not able to share with us. If I would have known this, I would have gotten a different bottle to sample. On the other hand, if we did have a different flavor, we wouldn’t have had a good story. We wouldn’t have giggled. And between the loss of Dave’s daughter last month and my daughter, we needed giggles and a light hearted good time. For that, my Utah angels, I thank you from the bottom of my heart.

Now, i am still stuck on the strawberry Merlot. that needs to come to market.

we do girl scouts tomorrow. it will end up being an all day event. these times are bittersweet. savannah should be there. savannah should be eight. savannah should be making her own bear. maybe i need to do one for her. sigh! but, i will be in the midst of many little girls. that will make me smile and be happy.

Thursday, April 14, 2005 8:22 AM CDT

There are many bereaved parents who read this site. Have you ever had anyone compare the death of an animal, aborted fetus, miscarriage, stillborn, etc. to the death of your child? All of these are insulting. In no way do I minimize their grief. I loved my zoo. I did everything I could to keep my animals alive. my kids I called them, until i had children. i grieved emensely when they died, but they are not my offspring. i know people who have had miscarrieages, stillborns, and abortions. of course there is a loss. but to compare that to a dead seven year old? what rock do these people crawl out from under? these comments are so painful. it minimizes the lives of the kids who became angels. they obviously don't have a clue how damaging that is. they just don't know what to say, so they say something stupid.

i have been thinking about this because it happened to Deb. It also has happened to me. after two years of hearing stupid stuff, the tolerance had been minimal, but I really think i am getting better. i just now have to shut them out. it keeps the hurt at bay. maybe it is just timing.

i cleaned out the guestbook entries. this should help those not on broadband. i printed them all. so close to my heart are every one of them. always a huge thank you for posting, for bringing a smile to my face, for remembering my child, for remembering and acknowledging that i hurt.

375.5 hours until the anniversary of Savannah's death.

---------------------------------------
some more old journal entries from her first web site


As everyday passes, I become more and more terrified. Radiation on average lasts 6-9 months. Six months ends in two weeks. How does a mother live day to day with this terror? It mounts. This is not a cancer in remission, living with a what if.
This is a definite and a matter of when. And to all that question me and tell me I don't know. F^&hem. They are ignorant and arrogant and that is not the support I need. Any moment her eye can turn in, never to be straight again.
Any moment she can start bumping into walls or just fall down, never to be able to walk a straight line again. Any moment she could lose the ability to smile, or swallow, or lift her arm. So few people truly understand how devastating this cancer is. And NOTHING works.
Chemo if it works is only temp, too. Hopefully she will be in the 30-40hat respond well to it. Only when radiation effects are ended will we know if the chemo works, and she's been on it since Jan. Frustrating. I concentrate so hard to enjoy everything and put the fears aside. But I cannot forget it because it keeps complacency at bay. And I cannot afford to lose out on a moment. The girls are gone with their daddy, and I have mommy time.
It isn't good this time. And I try so hard not to let it take me to a dark place. I love being alone but right now it is different. Time is running out, and I can't do a damn thing to slow it down. The tears don't stop, and I hurt so badly. I hurt so badly for my personal losses. My heart bleeds for my daughters.
It is so very unfair. I need. I need so much to do this. People tell me how strong I am. What do I say to that? Thank you? Aggghhh! I feel hollow. It looks good on the outside, but the fear is overwhelming on the inside. I must be PMSing. Let me add something because everyone is going to think I am a basket case. Well I am, but the sanest one you ever met.
I am not depressed, I have not lost my faith, and I have not given up hope. Anyone who even assumed this obviously doesn't get it. For the terror there is a balance...must always be...I am a scientist remember...the other force is love. What a wonderful balance.
For the anger...the balance is my passions...delved into physically until my body aches. Speaking of which, dancing just days away.

Lisa Hurley
5/29/2003


Vacation time is coming near!!!!! Next Tuesday after chemo!!!! We are all looking forward to our trip to the Riviera. We checked the Internet and found a great watermark near Gulf Shores that has Cassie and Savannah drooling over the rides.
Cassie, the daredevil, will be on everything while Savannah and I travel the more sedate path. The girls are excited about their new clothes, swimsuits and aqua shoes. We'll take plenty of pictures to get some added here.
Savannah has been getting closer to a normal existence with each passing day. I try not to get my hopes too high, but I do love seeing my angel running and playing again. I promised Savannah that she could plant wildflowers this weekend. It has been very difficult for her mother and I to devote enough attention to her big sister. It's hard to get inside the head of an 8 year old, but it is a great mental strain on her as well.

Mark Hurley
5/19/2003


another wonderful weekend with the girls. Hayley spent the night on Friday. My little blond is getting so grown up at five. I swear...all these kids I think I've adopted. Saturday we traveled back up to Branson...met grandma and grandpa...swam...and (I know...we're addicts) saw Joseph and the Amazing Technicolor Dreamcoat again. Anybody want to go again with me? Just let me know. It was incredible the second time around, too.
I have made up my mind. Savannah must be responding to the chemo. Her deficits only appear now when she is tired or not feeling well. That means her eyelid has not been drooping and her pupils have been dilated to the same size for a couple days now. I know...don't get too excited Lisa...I am very well aware this can change at any moment. I pray for several months of normalcy for Savannah and our family. We have such a busy summer planned.
other than that mommy keeps to a very small group of friends. I have grown quite weary of outsiders. I have found out more regarding her condition but just want to retreat to myself right now. I still have my outlets...my passions...but they keep me sane...I think!
AGAIN today I have been reassured there is no grand plan...my God is good...he does NOT take the lives of children...for any purpose. This is life...sometimes we get dealt a bad hand...by the grace of God we Survive...we Must.

Lisa Hurley

Monday, April 11, 2005 12:14 AM CDT

Absolutely wonderful. The Schleigh family is awesome. My type of people...REAL. Even without the tragedies we have suffered, they would have been good friends. Our journeys paralleled. This was so important for me and them as well. To meet someone who walked in your shoes. Of course there are also minor differences. We had joked about how much Rob and I are alike. Well, we are. And Deb...even though I never spoke to her or emailed her...I have felt so very close to her. I think it was knowing all the unwritten things that were going on. The anguish in Rob's entries. And Devin is just like Cassie. They got along great. You could tell in Cassie's actions prior to them arriving, she so wanted to impress Devin. She dressed up, the way she kept her hand on her hip, she made him a smoothy.

The sadness is immense between all of us. But when God asked Mel who she wanted as a parent during her short life...she picked very well.

A heartfelt thank you to Deb, Rob, and Devin for including us in your get-a-way. I am so honored.

I also have another thank you. This is for the Stewart family. I decided to save the samples and share the first with the Schleigh's. It just seemed right in my gut. Well, it wasn't going to mix well on Fri night, so we had the bottle of Strawberry white Merlot with breakfast. Awesome. That wine was made to be drunk for breakfast (not like I have ever had wine for breakfast). It went perfectly with pancakes and bacon. Not real sweet, but not dry. Very fruity and light. It needs to be marketed for breakfast. The fancy kinds...you know...breakfast on the veranda, overlooking the mountains, in the spring or summer, with fresh fruit and pastries, with the cat snoozing on the porch swing, and the dog bringing the paper up the driveway. Now there is a commercial!

Again, to meet another face to face with the same fears, thoughts, experiences, and devotion was one of the most incredible things to go through. I so wanted not to disappoint them. That, I thought, was real weird because most of the time I would care one way or the other. But this mattered to me.
---------------------------------------
some more old journal entries from her first web site


As everyday passes, I become more and more terrified. Radiation on average lasts 6-9 months. Six months ends in two weeks. How does a mother live day to day with this terror? It mounts. This is not a cancer in remission, living with a what if.
This is a definite and a matter of when. And to all that question me and tell me I don't know. F^&hem. They are ignorant and arrogant and that is not the support I need. Any moment her eye can turn in, never to be straight again.
Any moment she can start bumping into walls or just fall down, never to be able to walk a straight line again. Any moment she could lose the ability to smile, or swallow, or lift her arm. So few people truly understand how devastating this cancer is. And NOTHING works.
Chemo if it works is only temp, too. Hopefully she will be in the 30-40hat respond well to it. Only when radiation effects are ended will we know if the chemo works, and she's been on it since Jan. Frustrating. I concentrate so hard to enjoy everything and put the fears aside. But I cannot forget it because it keeps complacency at bay. And I cannot afford to lose out on a moment. The girls are gone with their daddy, and I have mommy time.
It isn't good this time. And I try so hard not to let it take me to a dark place. I love being alone but right now it is different. Time is running out, and I can't do a damn thing to slow it down. The tears don't stop, and I hurt so badly. I hurt so badly for my personal losses. My heart bleeds for my daughters.
It is so very unfair. I need. I need so much to do this. People tell me how strong I am. What do I say to that? Thank you? Aggghhh! I feel hollow. It looks good on the outside, but the fear is overwhelming on the inside. I must be PMSing. Let me add something because everyone is going to think I am a basket case. Well I am, but the sanest one you ever met.
I am not depressed, I have not lost my faith, and I have not given up hope. Anyone who even assumed this obviously doesn't get it. For the terror there is a balance...must always be...I am a scientist remember...the other force is love. What a wonderful balance.
For the anger...the balance is my passions...delved into physically until my body aches. Speaking of which, dancing just days away.

Lisa Hurley
5/29/2003


Vacation time is coming near!!!!! Next Tuesday after chemo!!!! We are all looking forward to our trip to the Riviera. We checked the Internet and found a great watermark near Gulf Shores that has Cassie and Savannah drooling over the rides.
Cassie, the daredevil, will be on everything while Savannah and I travel the more sedate path. The girls are excited about their new clothes, swimsuits and aqua shoes. We'll take plenty of pictures to get some added here.
Savannah has been getting closer to a normal existence with each passing day. I try not to get my hopes too high, but I do love seeing my angel running and playing again. I promised Savannah that she could plant wildflowers this weekend. It has been very difficult for her mother and I to devote enough attention to her big sister. It's hard to get inside the head of an 8 year old, but it is a great mental strain on her as well.

Mark Hurley
5/19/2003


another wonderful weekend with the girls. Hayley spent the night on Friday. My little blond is getting so grown up at five. I swear...all these kids I think I've adopted. Saturday we traveled back up to Branson...met grandma and grandpa...swam...and (I know...we're addicts) saw Joseph and the Amazing Technicolor Dreamcoat again. Anybody want to go again with me? Just let me know. It was incredible the second time around, too.
I have made up my mind. Savannah must be responding to the chemo. Her deficits only appear now when she is tired or not feeling well. That means her eyelid has not been drooping and her pupils have been dilated to the same size for a couple days now. I know...don't get too excited Lisa...I am very well aware this can change at any moment. I pray for several months of normalcy for Savannah and our family. We have such a busy summer planned.
other than that mommy keeps to a very small group of friends. I have grown quite weary of outsiders. I have found out more regarding her condition but just want to retreat to myself right now. I still have my outlets...my passions...but they keep me sane...I think!
AGAIN today I have been reassured there is no grand plan...my God is good...he does NOT take the lives of children...for any purpose. This is life...sometimes we get dealt a bad hand...by the grace of God we Survive...we Must.

Lisa Hurley


Back to work from lunch.

Wednesday, April 6, 2005 7:00 AM CDT

i was remembering this morning...two summers ago...during the honeymoon phase. savannah was getting thin again. she was still weak (they never do seem to regain their strength after the steroids destroy their muscles). anyway, we were in the kitchen and i had herb albert playing. we were jamming. taste of honey came on. i was about 15' away, the opposite end of the kitchen. i got on my knees and started crawling to her. she started laughing and backing up. my eyes never left hers. she backed up into the table, then crawled on top. but i kept coming. up the table i went with her. she was screaming and laughing so hard. we were both on the table. i was on my hands and knees. i stood up and helped her stand. we proceeded to start dancing. right there on top of the kitchen table. oh, we must have been a sight.

well, i never could break that habit with her. she was always wanting to dance on the table after that. i haven't danced on a table since she became symptomatic again. okay, it is not like i danced on tables prior to this yet alone crawled across the floor. that afternoon was magic.

tomorrow Deb, Rob, and Devin arrive. i am as excited as a kids first trip to disneyworld. i don't know what to expect. are we going to cry, laugh, talk? i will meet eye to eye someone who walked in my shoes. someone who had the same dreams and goals for their daughter ripped away. someone who did everything in their power to stop the beast and failed. someone who understood the cancer and struggled to give quality. the failing is a twang. i know we didn't fail, but as parents you can't help but feel it. i acknowledge this and strive to continue on. someone who watched the vibrance and life force slip away from our little redheaded spitfires. a bond of grief and mourning.

remember the good times. i couldn't for a long time. the death over and over and over. it doesn't stop. i knew in time it would become less. but actually what is happening is good memeories are sneaking in and catching me off guard. i want more and more. there is a guilt with that. how can i think of the good times, when she died. ridiculas, i know, but it is a feeling i can't deny. so it must be normal.

Tuesday, April 5, 2005 7:09 AM CDT

Pray for a safe journey for the Schleigh's. Many miles they will put on the RV. Getting away after the fact seems so very important. The slow deterioration and ultimate death of a loved one are so very taxing on the rest of the family. You do what you have to. Everyone else's needs pale in comparison. You are single minded for so very long. I think most of us are relieved upon the death. We have watched our children suffer and become dehibilitated for a year or more. We know when it is time for them to move on. Numbness sets in. Protection I think from the shock. Don't know how I am getting on this subject.

Cassie and I hung family pictures last night. Then played Chinese checkers. The house is coming along nicely. The furniture is all back. The stuff on the shelves is not yet complete. My bedroom and diningroom are done for the most part. I just have a bunch of clutter that i have to figure out what to do with.

We had a wonderful weekend. Remember one of my prior posts I wrote about working inside and watching my ex work outside. It was like that. I ironed and watched Jerry mow. I put together my china cabinet and watched him blow down the driveway. Cassie was doing what 10 year old girls do. I made a big lunch and Jerry's aunt joined us. I did laundry and Jerry burned in the back yard. Then we all sat down in the evening and watched a Hilary Duff movie. It was a perfect weekend. I am such a homebody. But it really is simple things like that which warms my heart. It is called family. It is what life is all about.

Friday, April 1, 2005 8:28 PM CST

thank you so much for being worried about us. jennifer...i think about you and kaelei so often. neosho, mo. i didn't know you moved. we are actually trying to start a kiwanis club there.

i just couldn't update. it had nothing to do with savannah, so i just couldn't post. time was nonexistant. i do miss her. 11 months was just two days ago. it is getting so close. the close of the anniversary year without my spitfire. a year ago... hospice... uncontrolable seizures... the changing of prayers from saving a physical body to releasing her. only a few can comprehend the intensity of that decision to allow and desire your child to die. it is insanely wrong and extrememly guilt ridden in a selfish way.

i went to a friends home last night. his daughter just passed away from breast cancer. this in no way is meant to hurt anyone... okay, out of the blue he begins to talk. then his wife interupts and changes the subject. a couple minutes later he showed me the work they did on their harley (like I know anything, i never can seem to get a ride on one). he started talking again. we stayed in the hallway and he just talked. oh, i mourned for him. i also understood it made his wife, my friend, uncomfortable. i asked jerry later if he caught that. yes. it is what he has done to me. i hadn't even thought of that. but it is true. it probably happens in most relationships. i told them that some people now act as if i am diseased. i see their eyes shift and their inability to make eye cotact. they no longer talk to me with ease and hurry to get off the phone or to another person. we decided we should both walk into a room together. actually a room with two doors and one of us on each end, trapping all these people, so they have to deal with us. or really find out we are still the same only different. we are not scarey. we are not to be admired. we are just BEREAVED MOMMIES AND DADDIES.

okay, today was our annual Kiwanis Pancake Day. We served over 2700 people. That is 300 more than last years and 800+ more than the years before. the Kiwanis Builder's Clubs and Key Club plus Cassie showed up to help. It was such a success. I am so proud of my club and the Russellville patrons. As pres, I was a sight. Big black eye. Dew rag. half sleeve tat of my daughter. and my pres pin (i let my hair hide this). and my kids working. i cannot express my gratitude and pride to all those who helped. they make my presidency an absolute joy.

when your child gets sick and even before, you not only love your child, but you fall in love with your child. these are very different things. and then your child falls in love with you. oh, that is something i cannot even describe. Cassie was watching Princess Diaries. savannah LOVED the song Miracles Happen. it is my song to my daughter. my child that i am head over heals in love with. i believed. i believed that miracles do happen. when we would sing that song together, i thought we could take the goliath called diffused brain stem glioma. here are the lyrics
MYRA LYRICS

"Miracles Happen (When You Believe)"

Miracles happen, miracles happen
You showed me faith is not blind
I don't need wings to help me fly
Miracles happen, miracles happen

I can't imagine living my life without you now
Not ever having you around
We found our way out
(on you I can depend)
Don't have to look back to realize how far we've come
There are million reasons
I'm lookin up
I don't want this to end

Nothin
Nothin should ever bring you down
Knowing what goes around will come around

You showed me faith is not blind
I don't need wings to help me fly
Miracles happen, once in a while
When you believe
(miracles happen)
You showed me dreams come to light
That takin a chance on us was right
All things will come with a little time
When You believe

There is no question we found the missing pieces
Our picture is complete
It's fallen into place
(it's fallen into place)
This is out moment, you and I are looking up
Someone is watching over us
Keeping me close
Closer to you everyday

Nowhere
Nowhere on earth i'd rather be
No one can take this away from you and me

You showed me faith is not blind
I don't need wings to help me fly
Miracles happen, once in a while
When you believe
(miracles happen)
You showed me dreams come to light
That takin a chance on us was right
All things will come with a little time
When You believe

When you believe
The soul is a shining light
When you believe
The heart has the will to fight
You can do anything, don't be afraid
We're gonna find our way

You showed me faith is not blind
I don't need wings to help me fly
Miracles happen, once in a while
When you believe
(miracles happen)
You showed me dreams come to light
That takin a chance on us was right
All things will come with a little time
When You believe

my love. my princess. my soul. my offspring. my bundle butt. my spitfire. my tears. my heart. i miss you, my dearest savannah with every breath that i take. i want you with me. but God wanted you more. i hope and pray i was the mommy you needed me to be. i hope i honor you in all ways of my life. you give me reason to continue. you give me reason to reach out when it hurts. you give me excitement to share your love and life story with others instead of hiding your existence within myself. you were worthy of the world and now it is my job to carry on even if i am uncomfortable.

goodnight dear family.

Wednesday, March 23, 2005 9:41 PM CST

i miss the links already.

i took a spill down the stairs this evening. i have a big black eye. my side aches at my underwire bra line. i am going to HURT tomorrow and the next day BAD!!!!! right now motrin and a couple beers are numbing me. Lisa was here. at least i had the sense to move stuff downstairs when someone else is present. yes, believe it or not that was a conscious thought.

yesterday was okay. today was rough. i got back in time for my Kiwanis meeting. And Make A Wish was the program. I wanted to hide in a corner. I was already on the verge of a panic attack, couldn't breath, and felt like busting out into tears. I did all my president stuff. right before i turned the meeting over for the program...I asked for my vice pres. into the mike, i told them that i may excuse myself because of my teetering on panic and tears and this was the day after enterance into hospice a year ago. i can't believe i publicly said that. actually, at the moment, i didn't give a rats arse. i remember thinking regardless of my life, the meeting had to be tended to. somehow, i made it through...even though the MAW woman asked me a couple things. i really didn't want to talk. really i didn't. i wanted to run so much. i kept telling myself face it. face it until you can face no more. then i gave myself permission to run. i didn't run. part of me is disgusted that i showed a frail side. i could have used the same excuse and not showed up. the old lisa was humiliated that i stayed in public scrutany. how many eyes did i catch looking at me? the new lisa (which they fought eachother) said screw it...i don't care what they think. nothing is as bad as what my daughter went through.

maybe we will get stuff moved, placed, and hung tomorrow night. of course, i may barely be able to move tomorrow. hahaha. i will be scared to look into the mirror in the morning.

Monday, March 21, 2005 4:43 AM CST

okay, the links are gone. it saddens me that a few bad apples spoiled this cart of love, caring, and learning. these links are what connected me to other children with the exact same cancer. this cancer is so rare. i learned more in the treatment of my child from other parents than i ever did from the doctors. the parents i found through these sites gave us the time between the two months they thought she would live to the 18 months she did live. i am not mad. privacy needs to be protected.

but i do wonder what is next. i have pictures of my daughter after she died in the photos. is that going to offend someone? i have seen funeral photos on other sites. death is a part of life, so i see where this is natural. but others may be completely offended.



i guess you would call the weekend good. i shed so many tears. not over the house. over savannah. they started when i left rolla. i wanted the world to disappear. 'all my thoughts of you', evanescence. i so much wanted to write. i would have done anything for the internet at that time. the tears were different. i miss her. we were all cheated. but they were for my love. i can't say they were happy tears. i was so thankful that i was chosen to be her mommy. i put on Fallen. cranked it as loud as i could stand it. and proceeded to empty my soul. Through every line of My Last Breath, I followed Savannah through her last day. That child lived for me and she died for me. I think it is the holding my last breath line that gets me so much because her lungs filled with fluid and she suffocated to death in my arms. her brain shut down because of the lack of O2. she was in a coma of course at this time. the seizures took care of that. and most likely brain hemorrages.

my last breath

hold on to me love
you know i can't stay long
all i wanted to say was i love you and i'm not afraid
can you hear me?
can you feel me in your arms?

holding my last breath
safe inside myself
are all my thoughts of you
sweet raptured light it ends here tonight

i'll miss the winter
a world of fragile things
look for me in the white forest
hiding in a hollow tree (come find me)
i know you hear me
i can taste it in your tears

holding my last breath
safe inside myself
are all my thoughts of you
sweet raptured light it ends here tonight

closing your eyes to disappear
you pray your dreams will leave you here
but still you wake and know the truth
no one's there

say goodnight
don't be afraid
calling me calling me as you fade to black

Evanescence

Friday I realized it was St. Pat's in Rolla, MO. I called Eric, one of my dearest friends. Yes, he was in the Black Hole, so I made a pit stop. I had a wonderful time. Saw several GDI alumnae. Went to KMNR. I hadn't been there since they moved the station. I touched all the albumns. Music is so much a part of my life. i didn't just listen to one group in my travels. I listened to an obscene mixture of music. not that the music was obscene...but going from Pink Floyd to Nelly to John Hartford to Hilary Duff.

We were quite busy at mom and dad's. i filled up my SUV with stuff. Tommy and I worked up at my grandparents old house. We ate at our favorite Bosnian restaurant. I really didn't have a problem leaving the house. I just wanted to come home. Jerry didn't have to work on Sunday, so I raced home. I wanted my best friend because the tears were different. Last night he got out the camcorder. The tape happened to be from a year ago, April 10th. After Hospice. Savannah was alive, barely functioning, trying so hard. you could SEE her trying. I have no idea how we lived through this. My parents, Cassie, and Jerry were so good. We had a home full of angels. I watched this horror movie on my big screen and saw the greatest love and joy. We just sat. My head in his lap. We cried. I told him, we did it right. We finally did it right. Our voices sounded so different. They weren't strained. They were peaceful and happy. How? This child was dying and you can see the purity of the love in this movie. You could see the slight improvement from dying easter eggs to the easter egg hunt. Then another horrific bout of seizures because the next scene was her coming around after the pseudo coma state. Then the screen went black. We both just stared at it for a long long time. The picture went out like her life. over. We were physically and emotionally drained and went to bed at 8:30pm. I woke at 1, he at 2, and we have been up ever since. i am now tired but have to go to work.

I see on other caringbridge sites, that we have to remove our kids links. I haven't heard from caringbridge on this, so i am unsure. i don't want to misuse their generosity, but i don't want to jump because i read this elsewhere.

Tomorrow is the 22nd. Last year it was on a Monday. I will relive the hemorage (stroke). This is am assumption because I refused any more treatment. My mother here with her. As she became distant. lost the ability to talk. then to make noise. as she spaced out and was no longer there. as her eyes quit moving and she blankly stared. as she lost the ability to respond to any stimuli. as i raced home desperately trying to reach Jerry. taking her to the er. the offering of massive doses of steroids. and me saying NO MORE. ENOUGH. It is time. I want Hospice, but..but.. but nothing, I want hospice. then taking her home. taking my barely seven year old daughter home from the hospital to die. this will pull me down. but it is something i must live through. if i bury it, i die to the world and those who care about me. i have to stand up to the memories and the emotions, the terror, the anger, the pain, the intense love. I love you Savannah. I would have taken your place in a heartbeat. I wish i could have. No child should ever have had to endure what you did. A warrior princess you are.

Thursday, March 17, 2005 8:47 AM CST

Friday
The Governors Banquet was long but nice. I am sure Jerry was bored. Our Pres/Sec meeting was long, too. But the bbq was good. no beer. van buren is dry. jerry surprised me and got a hotel room because it was so late when we got out and he had a six pack of beer. we didn't even finish it. the morning arrived way too early.

today i go back to my childhood home in stl for the last time. i am dreading this. a chapter will close in my life. but i will get to see my brother and parents and probably my cuz.

I try really hard not to be to hard on people. i hope i didn't come across like that yesterday. some people are just not capable. i always thought that. but savannah taught me that was wrong. all of us parents have heard...you are so strong...i couldn't have done it. we would have thought that too until it was dumped in our laps. we can, we did, you can. anyone can step up to the plate. even if sitting with a sick kid may be too uncomfortable, they can always find another way to support you. i wasn't talking about those who did that. i was talking about the ones who vanish. and also this has nothing to do with life, angels, and hurtful people after the death of my child.

hmmmm. have you noticed, i write that much more than before. it started out as an angry hurt statement of fact. she died. i see it is changed. my daughters death is a large part of my life. i accept it. sucks a big one and i can't change it. i want to hear about others kids who died. i want their parents to talk about them, their life, their death, life without them, anything they want. i have my caringbridge mommies and daddies. but if anyone else wants to share their love of their child, post it. if more people openly talk, i think less will be scared of us. more will be willing to stick with us because it will no longer be tabboo.

----------------------------------------

One thing savannah’s illness and death taught me was about selflessness and selfishness. No body better ever tell me, the world is going to pot. The outpouring of love and concern came from around the world, it came from strangers, and it came from kids and adults alike. Looking back, I lost a part of many people, friends, coworkers, my Kiwanis club, family, and acquaintances. They became uncomfortable, I guess. Didn’t know what to do so they back away. Life becomes about them. They are selfish people. I may have been one of those before savannah got sick. I am so very ashamed to write that. But I won’t be any more. Savannah taught me to be a better person. And this is not just something you can say and go back to the way you were. That dishonors her and is a farce. I hate when people say that. I will continue to reach out to where it is uncomfortable because others are living in HELL. I was there but I also had heaven in my home. It may be a way I deal with my grief instead of taking my grief out on others. I will revisit and revisit my pain and my love because without one the other didn’t exist to the extremes that I had them. I will talk about my child. Mostly I will write about her. That way others don’t have to be uncomfortable. You come here because you WANT to come here.

I remember one person was going to spend a week here to help but decided to go to on a European vacation again (note the again). A church wanted to help. They mowed part of the front yard and never came back. My own club just raked part of my front yard and never came back. I had a bigger mess to contend with. A friend of mine’s boyfriend showed up and weed eated the whole back yard for me (that’s how bad it got). Everybody thought they did something good. My good friend who wouldn’t let savannah spend the night (she was afraid she would die on her). The Christians who told me my daughter would die if I didn’t attend their church and truly believe. Or that God told them Savannah was healed if I believed. The person who told me, “and you call yourself a mother?” because I was considering NO CHEMO. The person who told me to let her die and not do any treatment. Again, what kind of mother are you? Then there are the wonderful people. The ladies from work who sat with savannah during lunch so I could attend Kiwanis. The person that brought me milk and toilet paper and would check savannah’s po box daily. The little gifts, a bottle of lotion for me or stickers for the girls to make us smile, from total strangers. The group of ladies who kidnapped me for a day at the spa. A friend of mine who said savannah, I want you to have your first ‘Big Girl’s Sleepover’ at my house. Then the people who did spend their vacation to stay with savannah, so I could work, so I could keep her insurance. My mom who moved in with me for a while. My dad who drove back and forth from st. louis. The principal at the school who physically carried savannah to and from lunch and sat with her everyday so she would eat a bite. Cassie who at mass every wed asked for prayers for savannah during the intentions, even when savannah was there (she never mentioned this to me, Fr. Charlie told me). My coworker who wrote a song for her. My friend who painted their picture, which hangs over the fireplace. The people who took cassie to and from girl scouts or a church function every week. And so many more. This was BEFORE she died. Note how many more good things than bad. the selfless people way outweighed the selfish people. but we were and still are so fragile. Living on the edge. So these things hurt tremendously. I know they were never meant too. I will talk about since savannah's death another time because there are differences.

We scare the hell out of some people. I know people who now avoid me like the plague, yet prior loved my company. I am still Lisa. I just have added dimensions now. I am a bereaved mother. I am a cancer mom. I hurt and mourn for others as I do my own losses. I call other cancer kids my own. I was an advocate for my child and her treatment. I became strong to fight everyone for her quality. What do they call women like that, bitches? I want to share everything about savannah, her illness, her treatment, her life prior to dx, her death, the families coping. Sooner or later, it will help someone else. Someone will see a connection. I have gone from very private to very public. And that makes others scared. Please, most things are still very private and will always remain that way. But the chance of helping someone else, to ease a pain, to understand a symptom, to comfort a journey. That is what this is about. It is also a selfish act. It is about me. It is my way of unburdening my pain. It is uncomfortable to a point because I put it out for the world to see and criticize.

I am sad today. I cried earlier. I know I will cry again. I hurt for the other mommies and daddies. I want to make their pain go away. I am sad for the parents who are watching their children die. I am sad for the parents would never got the chance to say goodbye. I miss my youngest daughter. On March 22nd will be the anniversary of the start of the insane seizures and entering Hospice. I need to be held. I want a man to wrap his arms around me and just let me cry.

Believe it or not, I am happy. Cassie makes me happy, as do my friends and family. I think my mom and I reconnected. She let me talk and didn’t interrupt or change the subject. She let me cry without telling me about her sadness. She knew I needed it for me. That was a selfless act. When cassie interrupted us, mom asked me to continue where I was. I don’t get this at home. I really need it now so I wrote.

Happy St. Patrick’s Day! I will have a beer tonight at our Kiwanis Governors Banquet.

Tuesday, March 15, 2005 6:54 AM CST

i tried twice to update yesterday. Nada! 'puter freeze. here goes again.

i feel numb again. i think it is just shock. so many brain tumor deaths in less than one month. sarah, melissa, john, and emerald. then specifically dpgs, Melody and Ray-Anne. i am a weenie. i still can't add them to the angels, yet. i also need to put another list for angel friends that had different beasts then Savannah. but right now, i hurt too much. so please forgive me in advance.

I still have problems coping. this is wierd, i think. i don't ever wake up thinking savannah is with me. but, i still wake up on occasion wondering how Celeste is doing. then i remember that she has been with savannah for seven months. so she is absolutely fine.

this actually concludes the kids that Cassie kept up with by herself on the internet. i was amazed that a nine year old started to connect with these kids after what she experienced. maybe it is a more mature way of healing. needless to say, i am so proud of her.

A big thank you to Celeste for sending something to help with the new paving stone to celebrate Savannah's birthday. you have become someone i am honored to call my friend.

riannon posted again. i hope she continues. i love her writing. remember, her (Jared's) site is www.caringbridge.org/ca/jaydog

peace for you today

Sunday, March 13, 2005 8:17 PM CST

Goodnight sweet Emerald!
You have awoken in the most glorious place.

Wednesday, March 9, 2005 4:14 AM CST

Friday again
With a heavy heart...
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Friday, March 11, 2005 8:27 AM CST

Loved Ones and Friends: Our beloved John became an angel at 2:49 a.m. this morning.

We will post details about his funeral mass, visitation, etc. as soon as we have them.

We thank you with all our hearts for the the love and support you have brought to our lives as John fought his brain tumor. Now, the tumor is dead, and John lives.

Jinny
www.caringbridge.org/md/johnfdaley
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Jinny has been an inspiration to me both during and after savannah's journey to God. she is one of the most amazing women i have ever known. her love and devotion to that wonderful man of hers shines. John is free now and prabably performing for all our kids. We love you John and Jinny!

Friday
sorry about the pics. i forgot Cassie's drawing at the office. cass and i are going to meet my folks in branson for the weekend. we will be able to spend some time with them before they move. i hope this numbness i feel can be curtained over for them. i would hate to burden them. they have to get through their own stuff and certainly don't need mine. sigh, i just want to be shown that i am loved. maybe this will help actually.

oh, for savannah's birthday we decided to get a paving stone. what a wise child i have. she said it should be for someone who is there for me. someone who has helped me over the past months, not pushed me aside. yeah, these are so close to her words. i told you, wise! where does it come from? savannah was always the intuitive one, and now cassie is becoming the same. anyway she suggested a stone for Carol, Sydney's mom. i told her only if Syd went to GKTW. she did. we will do that next week.

a note on savannah and being intuitive. you know she could pick up on things. she would try to fix things. BUT then, when they didn't get fixed, she had a coldness. if you crossed her or hurt her mommy or sissy, you were history. i really tried to tell her that they weren't worth her time. but i could never make her understand. she would fight for someone being hurt. and i mean FIGHT. that streak scared me. not that this is a bad thing to be. i just lay down. but not her. i would tell her that God will take care of that. she said, after I am done. Bless her heart. I need some of that. that savannah was lost when she got sick. her and her Karate chops and kicks.

i haven't had the heart/guts/strength to put Olivia, Melody, or Ray-Anne up with our diffused pontine glioma angels. please forgive me.

Thursday 4:15am

oh, i will change some pics tonight. M Elton, I am enjoying JG today. Thank you!

mark called cassie and i last night. he asked how we were doing. i told him thank you. he said this is not an easy day on any of us. i was so very touched. i started to cry. i made it through the day with no outbursts of tears.

maybe it is time i begin to mourn my divorce. first, let me say, in no way do i want my ex back. but i was robbed and cheated. we all were. we were cheated out of a life together. the drive for a career is very damaging, if you want a family. it becomes first. any words to the contrary, and you are controling and selfish. well, bite me. yes. i am very selfish. after my psuedo forced family i became focused on family. yet the hours didn't change. they became more and more. less and less my children had a daddy and i had a mate. he was so busy, he couldn't help me in the house anymore. i had a full time job. which i began working just 40-45 hours/week. came home. was mommy, wife, did all the finances, cooked, cleaned the house, and took care of the outside. the housecleaning and outside, i let by the wayside. maybe i am beginning to relive it again?

because he worked so many weekends and every morning and and every lunch and every evening, he slowly slipped away from us. but in his mind he was doing what he was supposed to. make money. i actually did threaten to be a stay at home mom. pissed him off. it would end our lifestyle.

we women are simple yet complex creatures. we just want time. their presence as we prepare for the day, maybe 1/2 hour to sit down and eat lunch, what about helping make dinner. not arriving home at 7, soooooo tired, and going to bed early. slap our faces. we feel insignificant. we wonder why the hell they even bother coming home. i got used to it i guess, but the pain doesn't stop. when he began construction on the Ft. Smith library he commuted. at that point i wished he would just stay down there. but he insisted he come home. the saving grace to that was that he took his secretary with him daily. otherwise he would have left at 4am and arrived home after 7. only to eat, spend a few minutes with the girls, unwind with a glass of whiskey, and retire by 9. what a frick'n home life.

when it would wear on me and i confessed my desire to have a husband, they go on the defensive. then i have a cushy-ass(his word) job. i don't work in the real world. what a joke. it hurt but i knew better. i could work the exact same hours but CHOSE not to, i CHOSE a family. yes, i gave up healthy raises because of that, but money didn't matter. people still throw that in my face. i realized my children were more valuable. my family was more valuable. we made enough money to be comfortable. our dreams changed. honestly, i guess mine did. i now wanted and cherished the 4 member household and had a responsibility first to them.

he began to bail when we would visit family. the drives became miserable. he could be working or playing, but instead i was forcing him to visit his family. they know where we live. doesn't matter, i told him. even when they would come down, he had to work...he was so important. well, he quit going. and i would take the kids. i took many of my vacation days and took the girls to family, his included! he needed HIS vacation days for himself. afterall HE earned them. and i am selfish because i wanted to control him.

when i got divorced my dad told me i could find a nice doctor, engineer, etc. i replied with a...i will never go there again. i will never marry a professional. i may refuse to even date them. don't be suprised if they are nothing as you would expect. i, for the first time in my life, want to be #1 in someones life. no man is ever going to give that to me. so i decided i would not have a serious relationship until the children were out of school. there are other reasons for that as well. i realized that i am #1 in someones life, two individuals lives actually. i can have entertainment and keep relationships at arms length. sounds cold, huh? it is called survival.

i also see a pattern. by being a women and working with men, i learn. you hear about those marriages were the woman spends spends spends. then they get a divorce. poor man taken to the cleaners. i actually have less and less sympathy for them. they missed the whole point. most and i say most only spent as a substitute for their husband. the more he was away and worked, the more she spent. what the hell else was this abandoned woman supposed to do. this is a cry of frustration and mourning their loss. they get 10njoyment in the shopping, 10njoyment in using his (their) money, and 80s empty, so they end up divorced. The money is 'theirs'. they are a union, a team. he just choses to earn more money instead of being a husband. i have a house full of stuff, don't care for clothes or jewelry much, so i save. this is how my ex walked with so much. it is obscene how much i saved in order to give it all to him. i kick myself for not spending it all. afterall, money was the substitute husband, by his own choice.

i am not talking about relationships where it is manditory to work like this to keep food on the table. i am not talking about households that one stays home to raise the children and keep a home. a home is a home is a home. this requires time and money. you have to balance the two. short projects and light at the end of the tunnel are tolerable. but as daily behavior it is not tolerable.

i remember him bringing my flowers he picked in the woods. i just got home from failing a EE test. he knew i had been studying and struggling. i cried. i remember watching him outside mowing while i was scrubbing the windowsills (yeah, I actually used to do that). my heart poured out just because we were a team. we didn't have to be together, we just had to be there, both doing something. the good times, the happy times, the loving times. sigh.

don't know what possessed me to write this. other than i just though of it at 3:50 this morning. actually got up to spend time with jerry before he left. but he had to leave early. slam! but not early for him, just me. this doesn't have anything to do with him, just me and my loss. he is just my boyfriend.

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Tuesday, March 8, 2005 11:57 PM CST

Surrounded by the enormous love of family and friends, Ray-Anne Copeland earned her wings at 7:27pm tonight. She fought this beast for 13 months with a true warrior's spirit and defeated it tonight with the grace of an angel. There are not words to tell you how much she will be missed.

Amy Cakebread
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Sweetest Savannah,
Eight years ago today I gave birth to a beautiful baby girl. A little girl with blond fuzz and blue eyes. Little is right because you weighed in at 5lbs15oz, over two weeks early. Perfectly healthy in every way. You immediately took to my breast. Little did I know at the time, that bond would continue for well over three years. It became as meaningful to you as it did to me. For just four days you were in your crib. Then I began to follow my instincts. To bed you came with me. You slept between your daddy and I for a couple years. What comfort and warmth you must have felt between your loving parents. A gift we gave. Pay for it, we did, but I never regretted it. I remember you so clearly at my breast, the way you would lay your hand on it as you nursed. The special look you had in your eyes, as you would watch me. It was like I was the most beautiful being, in your eyes. They were full of unconditional love, admiration, security, and peace. All from an infant, then toddler. All these I gave to you, but now I realize you returned it tenfold.

I remember your hair changing from blond to orange. I remember you hating to lie on your stomach and refusal to roll over, yet sitting before 5 months. I remember you walking at 10 months, then deciding you got places faster crawling, so gave up the walking business for another 1 ½ months. You loved barney and the teletubbies, much to my dismay. Your defiance in potty training. I still see you standing naked in the living room. Me asking then telling you to go to the potty. ‘I don’t have to go pee’, as you peed all down your leg and all over the floor. I remember you cleaning it up without getting mad that I made you do it. I remember your refusal of everyone except me. Only Lisa could sit with you, for the two times a year your daddy and I went out to dinner. I remember when that changed, and you would crawl into just about anyone’s lap. So secure you became.

I remember you being so protective of your family. Wanting to go live with daddy upon the divorce because ‘someone had to take care of him’. ‘Mommy, you can take care of yourself and Cassie, but I have to take care of daddy’. I told you that wasn’t going to happen. And you were pleased as punch. ‘Okay, that’s fine.’ What a spitfire. I remember when I would be down when I began to grieve my divorce, you somehow would see. Nobody else could. You saw my pain. You would touch me and tell me it would be all right. You were here and you loved me and we would make it together. What wisdom. The tumor was growing. It was to rear it head in just a couple weeks.

You watched me mourn your death while you were alive. I KNOW that. Because you saw into my soul even if there were no clues. When I would say I would take it for you, you would get so emotional. NOOOOOOO. You can’t have it. I don’t want you sick. you would die for me, and you did. You lifted me up when I was down. You made ME feel like a princess. You saw perfection in me. So beautiful I was to you. I remember you picking out my clothes when I went out. More risqué than I ever wore, but you glowed. ‘Now, that looks great mommy’. ’Savannah, my belly button is showing.’ ‘ So, you are ready now to go dance’.

In teaching you how to love, I was taught how to love. I saw how important unconditional love was. We know that, but I saw it in your eyes, your soul. The peace that comes with it. The love that flows because of it. This is what I want to give for the rest of my days. I also know it is out there for me. You showed me that. It is out there for your sissy. You made my heart full.

I birthed an angel, mothered and mommied and angel, I raised an angel, I prepared an angel for heaven, and I watched an angel become an angel of God. I have the greatest gift. To be honored by you calling me, mommy.

With a heavy heart, tears in my eyes, an emptiness in my being, I mourn for you. Never do I want you back. You are too perfect for this world. I miss you. I need you to wipe away my tears. I need you to tell me that whatever happens it will be all right. I need your touch to erase my pain. I need to hear you tell me I am beautiful, when I feel worth nothing, when my world collapses around me. I want to hear you once again tell me, ‘mommy, you are worth it. You are my mommy.’

My darling, Happy Birthday. Forever seven.

Monday, March 7, 2005 8:14 AM CST

tuesday pm
well, i had a good day. i kept running into people at all the offices i visited. except one...but i wanted to read the letter i wrote to savannah. i will post it in the am. i wanted that alone time to cry, which i did. i was able to laugh today. and i got all the work done i set out to do. i even had a moment of complete joy that made my heart pound for 1/2 an hour. so simple i am to make happy. some just can't understand that. then of course the pendelum has to swing. in your face...pain...hurt. oh well, keep busy and mud the walls. until i drop. i am scared of tomorrow. we were going to do another stone to GKTW for Savannah. we even decided on what it was going to say, but i changed my mind. woman's perogotive. off to the sheet rock mud.

Tuesday
JEANNE...i can't find your phone number anywhere. ask cassie...i searched for 45 minutes last night. i set aside a couple hours. aggghhh. email me please with it. it may be on an email at work, but i know i had it here, too.

thanks for all the support from the posts. it really does tell me that we are not alone. and thanks for the private emails. i actually am not scarey when i get mad. i am the most docile redhead i have ever known.

audrey began the patchwork on the walls last night. cassie helped. they were so cute.

i have to spend the day driving and doing field work. down to waldron, mansfield greenwood, charleston, and then home. may be a good thing with savannah's birthday tomorrow.

cassie and i decided to buy savannah gifts and mail them to other kids. then we changed it (our perogotive). now we have decided to scrape up enough money to buy another paving stone at her 'magic' place, GKTW. may have to put off cassie's room for a few weeks, but we will do it.

have a great day, my 'caring'bridge family.
---------------------------------------

Sorry that I haven’t returned any calls yet. We didn’t answer the phone on Wed because of Cassie’s birthday. But couldn’t listen to any messages until Sat after all the girls went home. Figured the calls were for Cassie. She went to her daddy’s on Thur and then had the sleepover on Fri. Jerry came in Sat night. The two of them spent ALL day Sun together.

Friday I was really weird. I had to leave work. I was good for nothing. I wasn’t in a bad place. I was just overwhelmed, awed, humbled, and sad. I couldn’t concentrate. And wasn’t getting anything done. That’s not fair to my company, so I took the rest of the day off.

I think several of us bereaved mommies are in the same place. I have always allowed personal venting in the guestbook. I think we are a special family and we support and pray for each other. Please please share stories, frustrations, grief. If someone else is in need, post it, let us know. That’s how we find out about other kids.

We make people uncomfortable. We do just by being bereaved parents. Then they say, how are you? And we tell them. We don’t have to be mad, crying, or a basketcase. Then again maybe we are! THEN, the assault begins. We make THEM uncomfortable. How dare WE not allow THEM to heal. We are not the only ones hurting and we open a wound for someone else regarding our children. Makes me want to puke! What have you been doing, they ask? Hmmmm, let’s see. The polio vaccine may have killed Savannah. Another immunization probably gave Cassie ADHD and asthma. Such and such just became an angel. Such and such is in hospice. Such and such is entering hospice. My personal relationships are getting strained. We are keeping so busy with our remaining kids. And guess what, now I need counseling! I seem to be exactly where I am supposed to be right now.

The best $25 investment I made was on a book on grief. This book even stole the words I looked so hard to find to describe to myself how I felt. It told me exactly where I had been and where I am. And I seem to be so very normal. I just regurgitate it here. Yeah, I relive it. So the F what? Do others not relive the events in their kid’s life? Well, Savannah died. It hurts, it is uncomfortable, but why forget. There is no reason too. That is part of our lives, too. We grow. As long as we can function in our homes, as long as we can function in society, we will be all right. Year two is supposed to be worse. Boy, everyone will be tired of us by then. Most marriages don’t last through a long-term illness and death. I can see why.

What I will say is that we reach to certain individuals for support because they want to be there. But then we are berated for how we grieve. This really confuses and hurts us. It isolates us. So we shut down to them. Then they don’t like it because we find someone else to hold our hand. We grieve differently. Actually, I think we grieve properly. But because it is uncomfortable…we need counseling…we need to think about others so they can heal. Bullshit. Our child died. And honestly, to hell with anybody else. Yes they hurt, but times that by one million and you have hit the top of the iceberg. If other parents in the same situation feel the same way and have the same needs…then how can what we are doing being wrong? Society must be wrong. There is an elite group of people who stare at death daily for months at a time in their childrens faces. Utterly helpless to stop it. The monster eats away at them. The treatment turns their beautiful bodies and minds into a monster. Then the death. I bet we are all so relieved when our children die. Of course we miss and cry but the relief is so great because we love them sooooooooo much.

This Wed, March 9th, marks the yearly anniversary of my eldest daughter’s birth. Again, I will not answer any phones. I don’t know how I will be. I may be fine. I may just hold Cass and cry. I thought about inviting Jerry down for that evening, but I just don’t know. I look at the pics here and think he should be included. We just grieve too differently. No he will be there.

Don’t forget to check on the other kids and adults. Don’t stop checking or praying after the death. The story is not over. The hard part has just begun. Thank God for Caringbridge.

I just thought of something. To this day, I have never been questioned about the final moments from her father. Don't know why I remembered that. All he asked was when did she die. I told him when she was pronounced, and he asked again when did she die. Then wanted to know why I didn't call him upon her last breath. Hmmmmm crying maybe. I guess I am just worthless. Oh well! Hahahaha.

Thursday, March 3, 2005 5:29 PM CST

Saturday
I put My Immortal back up. I figured it is appropriate for all the new angels and for our loved ones preparing for the journey.

to all those people who want us to back away from this bt land and return to normal. F U ! We are no longer the people we once were. They are the ones who need to GET OVER IT. they just DON'T GET IT. We are grieving. Obviously, they aren't worth a shit to help us, so we find some one and some way to grieve. it is healing. just because it takes us down does NOT mean it is unhealthy. we have a right to love. we have a right to hurt. we have a right to hold someones hand. we have a right NOT to be alone. because with these type of people around you, you are alone. thank God for Caringbridge.

May God place his comforting arms around the Schleigh's.

Friday
Last night, Heaven opened its gates and accepted Angel Melody.
in my minds eye, i see all our angel kids running towards the gates as they opened. i see mel, as she realizes she is healed and can run. they tell her she is just in time because they have a big birthday party starting in a little while. today is angel Noelle's birthday. so they are going to have multiple parties. now they can have one for mel's spiritual birthday, too.
Happy Birthday (on earth) Noelle and Happy Birthday (spiritual) Melody. We love you! Feel the hugs and kisses sent your way from earth. The tears we shed are because of the love you shared with us and the love we shared with you. don't be sad. we will always miss you. but you are free now.

when i was a kid, i didn't know what i wanted to be when i grew up. so i got an engineering degree. why not? if i didn't like it, i figured i could still work at McDonalds. i got a job offer as a field engineer. i loved it. i began a career and started on a path of training for big advancement. my boyfriend followed me to arkansas. he eventually started a career. we got married. i began to give up advancement because it always intailed relo. he asked if he could begin his career. then become stable in his career. then his career was the only one that was important. well, mine seemed to have vanished. things changed through the years. yeah, we made good money, took fancy vacations, bought a nice house, he got a boat, plane, guns, etc. he no longer had time to come home for lunch. we no longer left at the same time every morning. he had to be there early to relax and get stuff done. then he would stay late to finish up. (it never disappeared off my desk during the night!) he began working weekends. then on his off time, he was so stressed, he couldn't help me with housework, or yardwork, or cook, or spend time with me anymore. i gave up my dreams for my husband, who actually never really had any of his own other than to do more than his parents. okay, that is still good.

i never wanted kids. i wanted a career. the older i got, the less i wanted them. i just wanted my job and my husband. i don't know that that is bad. i had an oops. it was more like a sneeze, and i was knocked up. scared shitless, actually. i had NEVER changed a diaper in my life, and held a baby just once for about 30 seconds. i was 30 years old. i couldn't end the pregnancy, upbringing. i didn't know how to be a mother, yet alone a mommy. so i began to pray. on my knees, in the car, cooking dinner. i prayed to Mary...please teach me...please teach me to be the mother you were to our Savior. i don't think i ever stopped. cassie was born 1 full month premature. she was born hyperactive. needy and demanding child. i became anemic, an insomniac, and my anxiety rose to the point of panic. i was left. it is still amazing to me that work demands increased tremendously then. i was housebound, barely able to drive to work, to come home and be a mommy to a baby who screamed every night from 5-7 for no reason. what happened to my life?

but as time SLOWLY continued, it got a bit better. but my marriage became more strained. the stress from work, then coming home to a demanding child became too much. the anger grew. the volitility grew. he began to hunt more and more. then there were the plane lessons. he needed a ride because of a stressful day, he needed a ride because it was a beautiful day, he needed a ride because he didn't want to deal with the child and wife he so desparately wanted.

i had just finished breastfeeding cassie. i had to wait for a full cycle before i could start my birth control pills. i want to know, how can you get pregnant if you only have sex once a month? aaaaggghhhhh!!!! i actually had what i call, a breakdown. i almost lost my husband. but he promised to be around more. actually, until the time he said i could abort, i didn't want the child. at that moment, i was determined. i prayed again like i had before. i didn't think i could handle two cassandras'. i spent three months on my back to get her here. my sweet savannah. she was the angel baby. happy all the time. i carried her in my arm while i did everything from laundry to bed making. she was the joy of motherhood. my children were opposites. but now life was easier. savannah was a quiet happy baby and cassie was a toddler, a good toddler.
i became a mother and i also became a mommy. i have been berated for being too close to my children, for allowing them to be a part of my life, for being a part of theirs, for taking an interest in them, for not punishing them enough, straigthening them out. i allowed them to be who they were and loved them unconditionally even if at time i really wanted to hurt them. honestly, i don't think i did too bad.

but my marriage ended. i lost my best friend. and i had to learn how to be a family unit with just us. at that time, i only wanted it to be the three of us. then i was told my daughter was going to die. there was nothing i could do. i embraced that. i became focused on quality of life. i realized quantity didn't matter. this doesn't mean i gave up hope. but i also knew it was my responsibility to savannah, to cassie, to God, and to myself to provide quality. i fought for savannah's life. many have followed from her first website to this one. i fought the doctors, i fought my exhusband. and i had to endure stupid shit from idiots. i hope i succeeded. i think i did. in learning about grief, i have spent very little time on the guilt part. i really don't have any (other than not getting her another disney cruise---she just wasn't better enough to go). she died.

A couple years after my kids were born, i realized i wanted to be a mommy when i grew up. the 6 figure income which i seriously think would have been a reality no longer mattered. i was comfortable. i am a saver and was comfortable. i had stuff and really need no more.

the point of all this was about the grocery store today. cassie was with mark. i was shopping for her party tomorrow. i really didn't get much, $50 worth. stuff for breakfast, snacks, soda, mainly junk. i was alone in the grocery store. i used to love shopping. okay, only grocery shopping. i was thinking, i don't cook anymore. cassie, because of her meds, is now a picky eater, and i don't eat dinner. why cook? who would i cook for? i was crushed. i felt EMPTY. it took me three aisles to figure out the right word. EMPTY. how did i get to this point of my life? i can't even cook anymore. for those who know me, like my sister, this is a BIG DEAL to me. and i feel empty.

anybody want to come over for dinner. i have decided because life is too short, i will USE the fine china, i will USE the crystal, i will use the SILVER. i want to play house! don't get me wrong, i do use the above occasionally (probably more than most).

i taught myself a while ago that a full life is not about career. it is not about money (just be stable enough that NOT having any causes problems). it is about family. it is about security, providing it and receiving it. it is about love. love for eachother, for God, and for yourself. if you cannot love yourself you are a worthless human being and cannot truly give it. i learned once more to receive it and give it. but in the end, I am just empty.

this grief business SUCKS! this depression is very selfish. i don't like it. i don't like me here. but i am not THAT depressed because i am functioning. SO this depression is temporary. this depression MUST be gone through. this depression MUST be necessary. this depression must be a gift from God on the path to heal. this depression is why i feel all alone when i am not. what a SELFISH SELFISH thing depression is. it must be a forced way to pull inside to allow sadness, to allow mourning, to allow grieving. it forces you to face a hollowness. you know, i don't even feel that this is about savannah. that is why i have been so freaked. if i was a basketcase screaming and crying for my lost child that would be one thing. but this is so displaced. just EMPTY. but i still know (or hope i know) what it is and that gives me a fighting chance to live...for me...for Cassie...for Savannah.

thanks for letting me vent.

no, we got no animals. even though we are petless, my friends used to talk about my zoo. my animals ruled the house. dog and cats out the wazoo. my first children. however, i did see a dog. she had the best temperment. seemed very well trained and well mannered. i really pushed cassie to walk that one first. she named her angel. she wanted the puppies to walk. Lisa wants a grown animal. puppies and kittens will get adopted. i also want a female. because so few people here bother to spay. they say it is too expensive. go figure.

I think Cassie had a great birthday. After the pound, i surprised her with a pedicure. she wants another one already. she wanted to eat at ryans. so she did. jerry stopped by at 7 to visit. we played games. and then it was bedtime, at her request. can you believe my oldest daughter is 10? dang. that makes me 40. hahahahaha.

i feel better.

Wednesday, March 2, 2005 6:54 AM CST

Happy Birthday Cassandra Charlene Hurley!!

Double digits, the Big 10

Sigh! They grow up too fast. Of course, they die too fast also. This is going to be a bitter sweet day. I want to be so happy for her, yet I want to cry. desparately i want to cry. i made it through the holidays alright, but the birthdays are going to be rough. Birthdays have always been the most special. They belong just to that person. I ran across a picture of Cassie's 6th birthday. savannah was wearing one of my sports bras. she often wanted to wear something of mommy's. she also is sporting a purple bandage along her side. i had gouged her with my nails(they have NEVER been that long again). she had been jumping on the bed while i was laying down. i told her to stop. and does a four year old stop? not until she flew off backwards. i grabbed her arm and stopped her from hitting her head on the window, but in doing so i hurt her. oh, she cried. but she wasn't angry. she wasn't scared. she was sorry that mommy was so scared. she was sorry that mommy was forced to hurt her to save her. she was crying for me. i have the most precious children in the world. and now one is gone. my other needs to grow up. i need to watch knowing my other will forever be seven. i am crushed. i have been left alone to cope, to mourn, and to grieve. i know those here are here for me. i need that too. it may be the only thing saving me right now. i need to find the strength to give Cassie a special birthday. we will have company at 7pm so we will have to be done by then. i am not going to answer any phones tonight even if we are home. i am sure i will get in trouble for that somehow. that's all i need, more bullshit. i want to cry at the coldness of the world, at the coldness of people, and at the coldness of the disease. hell is not hot, it is cold.

and today cassie gets out of school early. she will help me with Builders Club. We are heading to the animal shelter today. OMG! She wants a kitten for her birthday. I keep saying no. I can't cope right now. I like being petless. I can't handle a seventeen year committment right now. they just don't exist. is this God's way of putting this in my face by going to the shelter? Am I supposed to get a pet? another joke to add to my life?

DON'T EVER STOP PRAYING FOR MEL, RAYEANNE, AND BEN. PRAY FOR MELISSA'S AND SARAH'S FAMILY.

Tuesday, March 1, 2005 5:57 AM CST

tomorrow my eldest daughter turns 10. jerry always said this was the most special birthday you can have, entering of double digits. i don't know how we will celebrate, she and i? she asked again about getting her ears pierced, but that was between she and jerry. i guess that will have to wait. could you not picture him taking her to do that. i am sure i would have to go along to sign a minors paper but then leave for them to finish up.

friday she is having a big slumber party. thursday will be a mad house, me preparing for the next nights events. pulling out and making up all the beds i have!

i need prayers to get through this. i seldom ask for me, but i am today. i have not been dealing well. then i have other stuff dumped on me. just in the midst of Cassie's big day and big party.

pray for Mel, Emerald, and Rayeanne. pray for all the parents and caregivers that are mourning and grieving the loss of their children. and i pray that you all receive blessings from the Big Man above.

Sunday, February 27, 2005 5:53 PM CST

Monday am
i can't hate. there is nothing to hate. i just love. i hurt because i love.

sorry it has been so long. i have been having a breakdown. i have been avoiding it by listening to others issues which is a good thing,i think. but my life is f'd up. i was cleaning house today and ran accross some poems cassie wrote. she is brilliant, yet would be mortified if she knew i shared. what insight she has. i origionally found them late summer, i believe. i could be wrong, i seem to have lost ALL track of time. here goes.
----------------------------------------------------------

Fine, I'll Try Ten More Times

I am trying and trying but can't get it right,
My boyfriend says try again
I said I'll try ten more times
I tried again but I can't get it right
So I try 8 more times
But I still can't get it,
So my boyfriend says you can do it!
I made it,
then he said forget it!
By: Cassandra Hurley
(something to read when you think about
what your boyfriend did to you!)
-----------------------------------------------------------

Is the above not awesome. how does an eight or nine year old grasp that? there was no boyfriend in her life. i asked and i believe she would have told me. she has a series of poems.

i finally reached a low where you think you can climb out of. you always seem to have to bottom out in order to grow and be stronger. i miss my baby so much. i miss the life we had. the love, the wholeness, the peace. even in the midst of hell we were sent angels. savannah is gone. cass and i have been abandoned. life goes on and so must we. again plummetted to the depths of dispair. i really do want so little. i just can't seem to even get that. i hate being kicked in the gut. how can you absolutely NOT see something coming?

please pray for mel, emerald, and ben. don't abandon them.

Monday, February 21, 2005 10:36 PM CST

Carol and Jeanne and WONDERFUL people.

Go to Mel and her family and Rayanne's and Ben's and Sarah's.

As for me, I am in a very dark place right now. I don't know that I can attribute it to grief. I seem to blame everything on grief nowadays. good excuse for a f'd up life.

We had a good time in Branson. House doesn't ever seem like it will be done. Can I take a vacation from life? My life in particular?

home from work now. i am in a better place thanks to a person that made me laugh. don't you love watching the opposite sex fumble their words?

Yeah Carol, you could be right. 40...the age the hormones start to retaliate.

well, i have the contract signed for the house leveling. Eyieyieyie!!! i knew it would be expensive, but i must have lost track of what expensive is. i suppose it is all relative.

i miss riannon's writing.

Wednesday, February 16, 2005 6:51 AM CST

This is the important time for prayers. There comes a time when it is time to go to God. This does not mean you lose hope. It is a love so pure to give up a child or loved one. Remember the bible story about the women fighting over the baby. The soldier was going to cut the baby in half. The real mom then, out of love, gave the baby up. You know the ending. The tumor is slowly destroying Mel. It is the most painful thing to watch. From diagnosis day forward you think about what it is going to be like. A preparing, so to speak. I think it is important to do that, BUT it is still an utter shock, helplessness, a gut fear, a failure as a parent, the ultimate sadness. We, our worldwide family, are at this place right now. It is time to let go. It is time to send this little redheaded angel princess to heaven. The kids are waiting for her. Flood heaven with prayers for a speedy journey. I have taken the liberty to paste part of Rob’s journal entry here for you.
Please pray for all this to go swiftly and painlessly for our Princess. Thank you and God Bless you!
Melody’s Daddy
Rob
We know what to do.
Other than my reliving my child’s illness and death around the clock, life progresses in the Hurley house. We keep busy. I did two reading programs last week for children. I saw several daycare and preschool workers that raised my children. We hugged, laughed, and got sad together. We read Little Critter books. My kids LOVED Little Critter. In fact, they both learned to read with these books. Both did book reports on these books. Like, who is the author…Mercer Mayer. Before I read I talked to the kids. Told them I think these books were written about my oldest daughter Cassie. She ALWAYS forgets and she ALWAYS says she is sorry. I made the stories interactive. Maybe it was more beneficial to me. A little redheaded girl sat right in front of me. Hair like Savannah, but dark brown eyes. She was stunning. She had magic in her eyes. I could see she could go places in her mind when being read to. She wore a denim jumper with white tights. Adorable. Okay, so you can see why I was attracted to her. I really wanted her to sit on my lap, but I just couldn’t do that.

Something very funny to me…I have always HATED red hair, and I have a mop of it. It was horrible being teased as a child and I would never wish it on another child. I have never been attracted to people with red hair. Honestly because I wanted them out of the gene pool. Now, my worst nightmare was to have a child with red hair. I was so lucky with Cassie. No tint whatsoever. The Savannah, blond fuzz. Perfect. Then after two weeks her eyebrows turned orange. I was horrified. Then her hair turned orange. OMG! Well, at this point in time I have to GET OVER IT. Savannah was very comfortable with her bright red hair. We were talking once in the car and she matter a factly tells me that her hair is NOT red. Mommy, your hair is red, my hair is ORANGE! If she can be that comfortable, so can I. That moment changed my life. I adore red hair. I am attracted to people with red hair. They are stunning. I am not talking anything carnal here. You know what they say about red heads. There are no in-betweens with looks.

Now with all my inconsequential gibberish, go to melody’s other site. She has a new picture in the updates. Yes, she is breathtaking. An angel already.

How did I get on this subject?

I pick up Girl Scout cookies today. I will deliver them tomorrow. Yummy!

Don’t stop praying for Mel. At this point, the Schleigh’s may start getting too busy to read and respond to guest book entries. Keep posting. They will go back to them when they have time. Keep posting. Hugs to you all for being there for all of us families. May God smile on you and repay you tenfold.

Friday, February 11, 2005 7:04 PM CST

8:55pm
new pictures! only if you are strong. i haven't been able to look at them in a long time, yet put them here. they may take a while to upload. my baby.

the first is in hospice, relearning how to swallow after a horrific bout of seizures. the second is interacting after regaining ability after a different bout of seizures.

the next two are self explanitory.

the final one is at a performance at her preschool. i love close ups.

please do not go there unless you feel comfortable.

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whoa! i had a freaky afternoon. first, thank you carol for hearing me out when i was spazing. second, thank you jeanne for sharing your evanescence story with me. and thirdly, what the hell happened...
i am out purchasing a valentines gift for jerry. while checking out, the clerk asks me what my band is for (not the livestrong one from celeste, he was wearing one too) but the brain tumor one from carol. i told him it is for brain cancer. now...me in my real life...don't bring up savannah unless someone asks about the tatoo (which wasn't exposed). what possessed me to do this, i have no idea. but i tell this 'kid' my daughter died of a brain tumor earlier this year. it just came out. then he says, my little brother has a brain tumor. my normal response would be, i am sorry. anything else can be stupid, nosey, or hurtful. i am so scared to hurt someone. but what the hell do i do? 'may i ask what type he has?' how did THAT come out of my mouth? i wondered that as i spoke it. he says he has a brain stem glioma and the drs can't get to it. the world disappeared at that moment. i said, do you have any idea how rare that is? yes, they tell us it is very rare. i had to have turned white. i never said a word about savannah, i couldn't. i asked if they lived in russellville...no, clinton. that is about an hour away from us. another customer was requiring his assistance. i wanted to scream at these people...DO YOU KNOW BABIES ARE DYING! but of course, i didn't. our tragedies are ours and not the worlds. i told him i wanted to give him something. while he tended to the customers, i got out one of my business cards and wrote down her web site, diffused brain stem glioma, my home phone number, and please call me...collect is fine. i then took it over to him. i never said my daughter had the same thing, i wrote it, i couldn't say it. i never even got his name.
i broke down after that. consumed in anger, then in tears. i want them to call. i hope they call. i just have to get over the shock first. arkansas' population is too small to have another one. aaaaggghhhh!!!!!!
enough of that. jerry is home now and is getting sick. i want to tend to him. probably not in the manner savannah did. i doubt he would eat one tic tac for me, yet alone a whole container of them.

love to you all and may God smile on the Shleigh family.

mommy to the brave little girl that God could not be without

Thursday, February 10, 2005 1:12 PM CST

Friday am
the links are working. yeah! thank you Jeanne for helping me. and i just gave up on the 5 am but 6am came way too early. but cassie made it to the bus stop just fine.
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I was thinking about something on my way back from lunch. Pain. Specifically, in regards to our diffused pontine glioma kids. In general, this is one of the only brain tumors that is not associated with much pain. Yes, they can on occasion cause headaches. But not with the frequency and severity of other types of brain tumors. This, to me, was always one of the blessings that went with this death sentence. Now, the steroids are another story. I cannot describe the back, joint, neck, and kidney pain caused from the obesity due to the steroids. Savannah was on Oxicodone and morphine for the above. At the end, we gave her morphine to help relax her with her intense seizures, but not really for pain.

Mel is not in pain. She is resting comfortably. Her blood pressure and heart rate are starting to climb. So far no seizures. Only about half the dpg kids develop seizures. A small percentage develop brain bleeds. Celeste got those. Ashley had seizures. I think Rachel, Sydney, and Olivia had none.

Back to the pain. Headaches and vomiting are not generally the presenting symptoms with dpg. Not to say they don’t happen and can’t happen. This is why this type of tumor takes longer to diagnosis. Morning headaches and vomiting are tell tale signs of a brain tumor. A pediatrician would have the kid immediately scheduled for an MRI.

Now another thought. More like comparison. Savannah had a HIGH tolerance for pain. So did Rachel. Savannah suffered horribly from ear infections even though she NEVER had formula. Okay, she never hurt from them. She just had them ALL the time. In fact, we would know about them when she would rupture her ear drum and tell me her ear has yucky stuff in it. Rachel, too. My point. Could a tumor in the brain stem start to shut down the pain receptors or reactors? Could this be why our babies don’t have acute headaches more often?

Another observation. One of Savannah’s presenting symptoms…inability to urinate. The doctors at AR Childrens hospital completely blew this off. They said it had nothing to do with the tumor. Yet, the more parents write about the specifics, the more I find out that this is actually pretty common. I am a firm believer that the doctors have tunnel vision with these kids. They can learn so much. So much can be written about. But all they do is treat them with drugs proven NOT to work. My poor baby totally lost the ability at the end and required a catheter. That can cause painful spasms and infection.

I HATE THIS BEAST!

Monday, February 7, 2005 12:25 AM CST

Tuesday 12:44pm
Please light a candle for our Melody. She has lost her desire for food. Her sleeping has increased substancially. She is not in pain. She is barely taking any fluids. My heart is aching. But that is nothing compared to her family. I sit here and think of all the emotions I went through. I know Rob and Deb are going through them as well. Even though you expect the end...it is ALWAYS a shock when it happens. Mel is still lucid and maintains her 'attitude'. Thank God.
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I layed down to take a nap. As I started to drift, I was allowed to see Savannah’s profile in my mind. So clear. That porcelean skin. Those vibrant blue eyes. Her smile was sedate, peaceful. She was so close. I could feel her presence. Oh, I was in heaven. My baby.

Back from STL. Packing the truck went great. I wanted to keep going. My fingers actually hurt on Saturday. I hope the drive to FL goes smoothly for them. I had a wonderful surprise. My uncle and aunt from Chicago were there to help move. I had no idea they were coming. I would have dressed better. All I took were tanks. Oh well.

Melody is not doing very well. Please visit her site. Prayers are so important. I believe they are heard and answered. Just maybe not how we want them. Be careful what you pray for. Let Rob guide you on this. I still have a friend who feels so bad because when I put the word out that I needed prayers for a comfortable and quick death for my daughter, she couldn’t bring herself to do it. She prayed for more healing and more time. All the misery Savannah was in. We had released her to go to the angels, but she just hung on. It was so miserable. We begged and pleaded with God to take her. She blames herself for the continuance on earth. The parents know what to pray for and when. It is a gift and responsibility. Follow their request.

The comment about the adult establishment…there is nothing I am doing that is wrong. I saw nothing pornographic. Just nudity and dancing. Don’t know what is wrong with that. I grew up in Europe and there is nudity everywhere. We saw nude statues and paintings all the time as well as people on the beaches and pools. And I like female nudes. Period! Nudes come in all sizes and none are of the anorexic figures from the magazines we try to model ourselves after. How many men have gone to them for their bachelor parties? And if couples go together, it may spice up their relationship instead of seeking elsewhere, understand. If you have never been to one, you imagine much more things transpiring.

Cassie and I had dinner here in Russellville. It was snowing in Fayetteville, and I didn’t want to chance Jerry driving in just for dinner. But it was fancy and expensive. She even had part of her dinner packed up and I let her have desert. She said, this really is special, you never let me have desert. I was and still am so very proud of her for all her efforts. One of the other team members told her…Cassie, you eat, breath, and sleep Quiz Bowl. Yes, we took it very seriously.

Also pray for John. Jinny, his wife, says even with the temador, his tumor has grown significantly. Jinny has been such a wonderful support to all us parents. So you know John has got to be a phenomenal guy. This brain tumor business just sucks! But I have met the most amazing people. Maybe it brings out the best, even at our worst. We learn to live minute by minute, on the edge, giving up everything, grasping at anything to help us cope. Then these same people, living their on nightmare, reach out to others. I have never seen a more compassionate group. And then those with hearts of gold, who, by choice, follow our stories and live a bit of our grief. Maybe through their prayers and them asking God to lift a bit of the burden actually has helped us cope. May they all be filled with blessings.
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another old journal entry

5/05/2003


What a weekend...so I am going to share. I try not to get on a religious bandwagon because our faiths are all so very personal, but I have to brag.
Yesterday was Cassie's First Communion. For those don't know much about the catholic religion...this is a big deal.
The kids spend a LONG time preparing to receive this sacrament. It is done in the second grade. All the second graders were called to the back to prepare for the entrance processional for mass.
Father Charlie sat down next to Savannah and myself...get this...asked if Savannah could also make her First Communion (a kindergartener)...you don't do this if you are catholic. I know there can be certain exceptions and she was given one.
I am crying writing this right now. I am so overwhelmed. I wrote about this on Savannah's web site in the guestbook just last week. He never read it! I was so happy for Cassie, yet ached because Savannah most likely will not live to the age to receive this sacrament. It hurt. It was a constant reminder, bittersweet. And God answered my prayer in the form of a quick thought to my childrens priest.
I have mentioned before that I broke tradition to send my kids 25 miles away to attend this school when we have a very good catholic school in town. Several yrs ago walked in and knew I would do whatever it took for them to go here. Never understood why, but I just knew this is where they were meant to be.
This is another piece of understanding. I will be able to get a triple frame now for all our communion portraits. Now Also I am Scared... I took Savannah off the dexamethasone today finally. I am terrified actually. It has been such a very long road. I slowed down the tapering because I followed my instinct. It took about two months longer. Every drop produced a small backlash in symptoms. You know the fear all to well. If all goes well, she will only have the dex with chemo.
Now I will push adrenal testing. I am keeping my fingers crossed. Lisa m/o Savannah 3-95, dx 10-29-02 dpbsg, tx 11-02/12-02 IMRT, irinotecan 1-03/present, and off DEX

Lisa Hurley

Wednesday, February 2, 2005 11:11 AM CST

Quiz Bowl was cool. A couple schools took it too seriously. I understand it is serious and I am not one to overindulge in childrens feelings. All our kids played in ALL the games. They are a team. During the lunch break some teams were studying. Some were running around. And the Catholic kids are playing poker. I couldn’t help finding humor in this. I was crushed about it when we received the directions. This rural town, to this two lane hwy, almost to another town, but before you get there, past the barn, turn on the dirt road, should be a small billboard for something else, should have quiz bowl sign up now, follow dirt road until you turn on another dirt road. Welcome to rural Arkansas. And another observation. I have always heard that girls in poor rural areas are treated as dumb in school. I never understood this because to me it always seemed like girls were smarter and I grew up thinking I could go toe to toe with any boy. Well, three of the teams had NO girls. I just don’t GET it.

I am taking Cassie out tonight for a f-a-n-c-y dinner to celebrate quiz bowl. Immediately she asked how much the average meal is. The three of us will be eating. And gave me a sum total of my expenditure for the evening. Aggghhhh. She forgot tax and tip and drinks. Do I tell her? It will be another late night. The restaurant is an hour away.

I know the new links don’t work. I will work on fixing that, but won’t have time for a few days. I go help my parents tomorrow for their move. I will be out of pocket for a few days. House is still coming along. More and more things need to be tackled. Everyday more things fall into place and more get added to my list of things to do. The computer is back and I am hooking up wires so hopefully we will be on-line this evening.

Pray for Melody and her family today. Pray for the other families who have experienced this journey. Pray for the families hearing for the first time the diagnosis and prognosis. Pray for Nicole and Shari. Her tumor is growing. And they have been told to wait.

God be with you all.

Monday, January 31, 2005 12:34 AM CST

I am in a much better place now. Thank you for your prayers and words of support. I think I have reconnected with Jerry. That makes my heart very happy. However, I am still angry. I am angry for the other children and their families fighting this monster. Mel has lost compete use of her right side. Please pray pray for them. I want her to be the miracle that WE want. And Ray-Anne also. She just wrote a mad letter to her tumor. I may do that, too. You know how to bounce between the sites to find her.

Carol sent us some brain tumor bands. Thank you so much sweetie. I will call you in a couple days. I only took mine off one evening when I went out. Jerry won’t wear any jewelry, but he snatched his right up.

Quiz Bowl is tomorrow. We go to Bee Branch. Cassie made my promise that we will study all day today (that means this evening). If their team does well, I anticipate our return being somewhere around 7pm. I’d say pray for the quiz bowl team, but that seems absolutely ridicules with cancer killing children.

Saturday night some friends of mine plus me crossed into OK for a night away. It was a well-needed break from reality. We even watched an amateur show. Point of interest. At this adult establishment, I have never seen so many female patrons, all of them with their men. If this is a trend, then I think it is a good one. Maybe it was just a fluke.

FYI…the first song has nothing to do with savannah. cassie and I just LOVE that song. We belt it out together. Can we play it again, mom? Can we play it again, mom? Sure. It is my grief, though, and where I was.

Please pray for Melody and Ray-Anne.

And a thank you to Jeanne who helped me get the other links up. I will add more when I get into my history to locate them.

Thursday, January 27, 2005 6:57 AM CST

***NEW LYRICS***
12:40pm
i hear the very last breath savannah took. her lungs were full. she tried twice more. her body tried to breath. Damn, it tried. no room for air. that sound no one else in the room heard. it was a gift and nightmare to me. i gave birth to her. so very personal and intimate. and i heard and saw her last breath. so very personal and intimate. cyclical. my personal nightmare until i die. just right now, i can't get the sound out of my head. i was helpless. she died. i tried to ease her to go. i told her not to try anymore. and by the time the nurse can in the room, her heart had stopped beating. my daughter was dead!
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more delays then life steps in and creates havoc. well, actually it's people that do that. still have no furniture moved back. it is impossible for me to do it on my own. the painting should be done today.

i have just felt absolutely sick the past few days. diarreha and heaving and then the tears. it feels like a pit in my stomach. an emptiness, a hole, i feel alone even thought i have cassie. i am all alone. i think this is part of grieving.

Monday, January 24, 2005 10:59 AM CST

I remember the first night jerry spent at the house. It was accidental on purpose. He was to come over for dinner and games with the girls. There was a note on the door when we got home. Sorry…hurt my back…going home to bed. Savannah freaked. Yelled at me to call and have him come over. She would take care of him. Call him now, mommy. Well, I did. He had just gotten home and sounded miserable. I told him what savannah said. He was quiet, then said, he was on his way. I told him only if he is up to it. He said I’m not, but I have to come if savannah wants me there. Savannah was so excited to be his nursemaid. She made a large pallet on the floor for him. When he came to the door, she took his hand, and led him to his makeshift bed. She fluffed pillows for him and covered him with blankets. She kept stroking his hair and shoulders.

In her little pipsqueak voice she says, hold on, I’ll be back in a minute. She pulls in a step up stool and brings in a container of orange tic tacs. She sat on that stool and fed him a tic tac every five minutes for almost two hours. She said the tic tacs were medicine. She seldom took those little hands off of him. She rubbed his back, his face and neck, his shoulders, and his hair. She was the perfect little nurse. I had put 800 mg of ibuprofen in him and he finally started to doze. Savannah left him just long enough to get ready for bed. Then she comes into the kitchen and matter-a-factly informs me that she will not be sleeping with me or sissy tonight. She will be tending to jerry all night. We will have to be brave and sleep by ourselves. I about sh#* in my panties.

A sane mother sends her determined child to bed, wakes up the male ill friend, and sends him home. But when your 6 year old is dying and is determined to fulfill something in what little time she has left, the sane mother loses her sanity. I told God, I hope this is okay. I woke up jerry and told him what savannah wanted. He said no and he had to leave. Savannah comes in and sees him try to get up. She was by his side immediately trying to lay him down (with force, I might add). It is okay only if you are comfortable. All right. She pulled up pillows for her and laid down next to him. The bedroom door remained open and I could see them. I woke several times during the night. I don’t think you could have put a piece of paper between the two of them. she was snuggled in so close. In the morning, he still hurt but was able to go to work. He called savannah and thanked her for making him better.

The schrunk was delivered and is beautiful. We got the bed put back. Everything is looking good.

Savannah,
Baby, I miss you with every breath. You would like the remodeling. The schrunk takes up the whole bedroom wall. Just think of the decorating you could do. You would have a field day. I remember walking by a table and all the stuff would be gone. It was so hard not to be mad at you. It would be filled with your micro pets. I would open up a jewelry box and my necklaces would be gone. Inside was your big-jeweled plastic rings or crayons. And in a special little box of yours resided my jewelry. There were also those times you redid the décor with my stuff. Some pulled from here and some pulled from there. Honey, I want you to know, your micro pets remained on the end table until I had to move them for the remodel. Maybe I can line them up on the schrunk for you. You actually had phenomenal taste. Everything you did looked great. Okay, I still don’t get the rock placed in the middle of the table, though.

Cassie has been helping me. You would be proud of her. I am actually letting her handle the Lladros and stuff. I think nine is old enough to learn how to take care of stuff, don’t you. I picture, in my mind’s eye, the three of us, sitting on the new area rug, dusting each individual piece. A family unit. A bunch of girls sitting around doing girlie things, cleaning the pretty stuff we decorate with. You would clean one of your little treasures with the same care as a Hummel.

Oh baby, there are others living the way you did. Their little bodies being taken over by the tumor causing their bodies to start breaking down. I relive every moment. Every glorious moment of having you with me, and every horror of watching you slowly die before me. How did we do it? I don’t know? I miss you so bad, but I never want you back the way you were with the monster in your head. My poor sweet bundle. I hurt for them. I hurt for what you had to endure. I hurt for your sissy. I am happy you are in heaven. But a mommy can’t help feeling all alone when her baby dies. Please don’t be sad for me, Savannah. It’s because I love you so much that I am sad. I wouldn’t have it any other way. Good night sweet princess. Mommy loves you and misses you.

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Journal entry from our MAW trip

4/14/2003


It's good to be home...NOT...we weren't ready. One more week would have done us. What a magical time we all had...our wish girl...her sissy...her grammy...and her mommy. I think the easiest way to do this is through itinerary.
1) Sat...picked up grandma from the airport and overnighted in Little Rock.
2) Sun...had to be at the airport at 5am to meet with the MAW volunteer with our package. Time changed, too. Wonderful flights...GKTW greeter met us at the airport and got our rental car taken care of. Proceeded to GKTW for check in. WOW!!! check out their website at www.gktw.com and take a tour. Got our wheelchair...couldn't have done vacation without it and her magic button...this gets her the perks at the parks. Couldn't stay at the complex, they were booked. But 'NO CHILD IS EVER TURNED DOWN' so we stayed at the holiday inn family resort and suites (owned by the same man who founded gktw). They loaded the girls down with stuff so they wouldn't be cheated by not staying at the complex. Grabbed a sandwich and ice cream. Then checked into the motel. Incredible. Apparently rated the best in its class in the country for the last two years. First floor by the pool, which we used that evening. Oh, loved the handicap hanger in the vehicle. It made it so much easier with a wheelchair.
3)Mon. 45 SPF!!! Met with Mickey and Minnie for pictures. Also hung with Pluto and Mary Poppins. Got oriented and headed to Disney. Weather was warm and the park was extremely crowded. Got autograph books right away and started to fill them up. You go to the person in charge of the character. They get you right up there...no waiting. Had to go to the wheerchair entrance for the rides. They got us on right away. I felt uncomfortable at first, but kept telling myself...it's not about me...it's about Savannah...get over feeling uncomfortable...and it IS fair. Went to a swimming party at gktw at night for a bit.
4) Tues. 45 SPF!!! MGM studios. Not much to do here. Muppets 3D was cool. Added to the autograph book. Went to a Medieval dinner theater. It was cool. Savannah took her whole roll of film here. Watched horses while we ate. It was good food and we had lots left over. I felt bad that I couldn't take the leftovers home. I did have to have a Bass Ale. I thought it was appropriate.
5)Wed. Got COLD!!! Bundled in sweaters and headed back to disney. Forget the SPF!!! Hit the rides we missed on day one, got more autographs, hit the repeat rides, and did our disney shopping. I think that got to be Savannah's favorite thing to do. The shopping did not come from me. Little Savannah's knees got burned. That was the only thing exposed to the sun...bad mommy. I cannot believe that not only did I forget to grease us down...I left it at the hotel. I am so anal about skin protection. I had been worried about her scalp, but she actually wore a hat the whole time. Just told her she needed the magic hat on for everything we were going to do. Worked great.
6) Still cold. Aunt Jeanette, Uncle Les, Peyton, and Keaton arrived from Tampa and we went to Universal. They treated us the best here. Saw Shaggy and scooby in the mystery van. I was digging for my camera to snap a picture when they drove by. Shaggy motioned us to go to the back lot. They met with us all, along with several other characters coming out. Went to Islands of Adventure next. Little Keaton fell and took the skin off his nose and upper lip. Poor baby. The girls had a marvelous time. Everyone went to gktw for dinner. It was Christmas at the village this day. They got to visit with santa and get a gift. Decorated cookies and made ornaments afterwards. All were included. I think everyone was overcome with this establishment.
7)Fri. Little warmer and off to seaworld. Girls got a special feeding and petting with the dolphins. Fed seals and sea lions, too. Also, one of uncle Les' customers is a trainer here. He gave us a special show and took us to the back to see the otters. Savannah fell fast asleep in her wheelchair. Could barely get her to stir until we did the tourist shopping thing. She became quite mobilized. Had to see every item in the shop. Dinner, tour, and ice cream at gktw that evening. I was a bad catholic and allowed meat and no fasting this day. I'm sure God understands the circumstances.
8)Sat. Time to leave. Had a great breakfast at the hotel. Said our goodbyes to my sister and family. Checked out of both places and headed to the airport. Beautiful warm day. Great flight home. Arrived back home around 8pm. Never caught up with daddy that night, so the girls had their last night with grandma. I am sure I missed so many things. The girls had such a wonderful time. All thanks to Make-A-Wish and Give Kids the World. What incredible organizations. And almost all volunteers. NOBODY better tell me 'the young people of the world today...yada yada yada...' These kids spent their vacations, spring breaks, evenings, and weekends volunteering their time for ill children when they could be playing nintendo or hanging with their friends.
Many of the retired volunteers were preparing to end their 6 months in FL and return home. The generosity of self, $, compassion humbles me. In the future, I would love to do the same. Enough for now. Hugs to all.

Lisa Hurley

p.s.
i just heard that today is supposed to be the most depressing day of the year. i am there, are you?

Wednesday, January 19, 2005 10:26 AM CST

Friday 7am

need to clear this up. cassie's stepmom jumped in and went to find her for us. cassie TOTALLY forgot she had cheerleading. poor bus driver sat with her for 50 minutes. i feel so bad.

audrey came over last night. we just talked. you know how us women get. not bitching, whining, or moaning, just talking. i could barely keep my eyes open at 10pm.

5:25pm
aaggghhh!!!! cassie just freaked mark and i out. he goes to morrilton to pick her up from cheerleading. i head the same direction 10 minutes behind them so i can give him her medicine (and go to the liquor store). mark calls me...cassie never showed up. long story very short...her stepmom left work and went to the bus stop. there she was. mark and i are 25 miles away.

God, i needed a hug and cry after that. but that's okay...everyone took a day off so i could actually spend the evening with jerry. wasn't positive he was coming in but i really figured he would after the past week we had. NOT! i am still shaking and my cell goes off. i jump. it's jerry...he is finishing up stuff. okay?! so i guess you aren't coming home tonight? no, i will work on some stuff at the hotel. he'll call later. well, an empty house it will be. stocked now with alcohol. anyone want to join me? i don't drink alone. but i may after the crap i just experienced. as Greenday puts it, 'I walk alone'.

Thursday Jan 20th 4:17pm

the flooring is all in. absolutely beautiful. my furnace quit working after my friends moved the control unti, but that got fixed today as well. don't know if jerry is coming in tonight since he came in last night and will come home tomorrow night. cassie will be with her dad. it will literally be a lonely empty house. wonder how the acustics will be. time for loud music?
thanks for the messages of support.

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i meant to post this when i first got to work but i got real real busy.
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I hurt. I cry for my baby. I cry for my loss. I cry for the loss to the world. I cry for the other mommies and daddies who watched or are watching their children die.

I found another web site of a pontine glioma kid. What a horrible battle. In and out of the hospital. Surgeries…infections…complications. What quality of life is that? So much of the problems are from the treatment. I have more and more admiration of parents who refuse treatment. It strips away their identity and dignity. Our kids are given treatments known NOT to work, yet again and again the children are given it. They all DIE. Enough already. Find something new. But, and this is a big but…the parents. Parents demand the doctors do something. Even if they don’t do chemo…welcome to the world of dexamethasone. Initially it is good. It brings our kids back for a short time. But then the horrors begin. They become obese. I am NOT taking about the looks part. However, some kids have emotional issues on their looks. I am talking about the complications from being obese. Blood pressure and heart rate issues, sleeping, breathing, mobility, constantly eating to the point of vomiting and STILL being hungry, diabetes, acute constipation. ‘But oh the tumor is shrinking, you hear from the doctors’. Well, so f*&^ what. That’s just one side effect. Lets’s see, what else does this little pill cause…massive kidney stones, obsessive compulsive behavior, depression, anxiety, osteoporosis, back fractures and brittle bones, muscle deterioration, CUSSING, personality changes, endocrine issues. A cold can kill one of these kids. And the doctors don’t even tell the parents. I guess since our kids are going to die anyway, why inform the parents of that little thing! It causes fungal infections, which are damn near impossible to get rid of. The kids can have urinary problems because of the water retention such as bed wetting or not getting to the bathroom fast enough (kind of hard to run on a little frame that now is shaped like a ball). When the dex causes the blood pressure to soar putting the kid in stroke range…what happens when they suffer a stroke? Do they call it a tumor hemorrhage? Convenient, huh? Their immune system is compromised severely. (back on the endocrine issue) The massive stretch marks, the itchy skin, the inability to have comfort outdoors (sensitivity to temp changes, wind, and light), and the ultra thin skin.

We parents are desperate to save our kids lives. We just don’t realize at what cost. We cart our very sick kids all over the country, we put them on alternative treatments, we subject them to surgeries, cram supplements into their mouths, don’t allow them to eat junk food, and we up the doses of dex. For what? I don’t mean to cut down any parent. I keep saying we because we are banded and bonded. We all must find our own path with our children. I just look back at where the journey took us. How hard we all fought. What treatments I allowed and didn’t. You see, these decisions were mine, not hers. This will rest heavy on my shoulders until the day I am reunited with my darling. I am at peace with the journey, but that doesn’t mean I can’t think about it, be angry about it, or revisit why I chose what I did.

I have never stopped praying for the first miracle, never. There has to be a child who will be the first.

God gave us time. I made the promise that I would never allow the treatments to harm her. I will allow her to go home to God. I would allow her a full child’s life, so I chose no alternatives. I just never saw where they did anything. The kids still died within the same time frame. Then I heard it gave them quality. Quality, get them off the damn dex and they will have quality. Boost the immune system with herbs. Get them off the damn dex and their immune system will be back. If my child was going to die and she wanted to eat bacon 24/7 (which she did), then so be it. Do we really have to worry about heart disease?

This brain stem glioma term actually pisses me off. They need to be much more specific. They say 2 months to two years. That’s a catch all, too. I would like to know the time frame for kids with TYPICAL DIFFUSED INTRINSIC PONTINE GLIOMAS. They are not JPAs, which respond well to treatment. These are highly aggressive cancers.

Then radiation shrinks the tumor significantly and everybody gets so excited. HELLO! That means it is highly aggressive which means it comes back with a vengeance, quickly. What a success, we are led to believe. I think even the doctors believe this. Damn, they need to start talking to a bunch of bereaved parents, and let’s find some patterns.

You all know savannah’s tumor was the size of a small fist and looked like a light bulb on the spec contrast. That normally means very aggressive. Radiation time. It barely shrank, barely. The doctors didn’t even seem encouraged. But it turned gray at contrast. That means the radiation turned off the light bulb. Savannah’s was most likely a grade II. Unfortunately, they are harder to kill and take longer to take the life. However, they also turn aggressive, so it really doesn’t matter. Us parents discussed this once on one of my yahoo groups.

None of what I have written if from a doctor. I am just a mom. A mom who had to take the journey. A mom who chose not to be blind. A mom who researched and accepted the knowledge gained from other parents. I know there are exceptions to every rule, and I have written no rules here. This is my observation. And for those who come here, you know I write for me. I write to release my pain and frustrations. I also write for other parents. I found so little on dpgs. The best info I EVER got was from other parents.

I sound bitter. Maybe. I am tired. My heart is broken with loss. We fought hard. And I watched my child die. I gave her life. Then I tried to put a whole life into 18 months. It is not fair.

I have these wonderful things happening in my house, and I can’t stop being sad. Savannah started CPT-11 on January 21st, 2003. I remember the dr trying to put her on chemo at the beginning of January. I said NO. Not until she is weaned some from the dex. We don’t have time he said. I don’t care. The dex is hurting her and I can’t allow that. They actually had her scheduled to start chemo and never ever told me. What the f*&^Anyway, after two weeks into the weaning we started chemo. Little spasms of anger appearing here, sorry. My mind just flashes back to things I had forgotten.

Please please please pray for the children battling this cancer. Pray for their families. There must always be a first. Never forget that. I never have. Even though I may sound negative, I am not.
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i also thought i would throw in an update from her other website again...i about flipped when i read the next one up...interesting.


4/03/2003


Time for an update... Savannah is doing so so so well. Everyday she fractionally improves. This progression has even amazed me. I know the radiation is still working, and possibly the chemo might work, but I feel it is mostly the steroids reduction. Yes, she is still weaning. But I have taken over control of it and my daughter has blossomed.
I wish I knew this was in my control before. She would have not suffered so severely. She has lost 4.5 lbs so far. I have seen first hand the problems obesity can cause in a 5yr old all due to my nemesis. I slowed down her weaning quite a bit. Fast weaning could result in brain swelling (hydrocephalus??), coma, death, and reoccurrence of tumor symptoms. Very very tricky business. Deep sigh!!!
She is at .5 mg every other day still (equivalent to 50mg of prednisone for a comparison). I have chosen to keep her at this level for another week. She is coughing and Cassie is sick. Her body may not be producing enough cortisol on its own (yet or ever) to help fight an illness. Remember endocrine misfunction or nonfunction could make a simple flu a death sentence, and sorry I just don't want to chance that.
So far AR Childrens Hospital hasn’t tested her cortisol levels. The dr's nurse says she is fine. All their children are fine. It's funny, all around the country bt kids ever on steroids have their levels checked. I guess here we don't get endo issues.
There is a test that is that tests for secondary adrenal insufficiencies. This is what she could suffer from. The dr from St. Judes told me he has never heard of keeping a dpbsg on the dosage of dex for the time frame she was left on. He was also very surprised they did not use cortef, but the way she was being now was the best way to wean without it, very very slowly.
He also added another week to my sch. He gave me comfort in my mothering ability and also strength. I am so glad I spent the time and took the girls to St. Louis over spring break. This was about Savannah and whom she wanted to see and what she wanted to do.
We saw oma, uncle tommy, katie, susan, patty and family, donna and family, chris and family, gramgram(new name for grandma) and grandpa. She did want to see Linda and family. We just had no time. We didn't have enough time to spend with anybody. We went to the zoo, her favorite library, bought Cassie's first communion dress, and spent busy time at oma's flat.
She even had her first big girl sleepover. She has been jealous that Cassandra gets to do this. Chris asked...so I asked the girls...Savannah says, are you going to be there...wasn't planning on it...YYYIIIPPPPPPPEEEEE!!! I had a rough time with it. I kept hanging around, didn't want to leave. But when you have a limited number of days with your child you don't want to miss any.
But I must give her the chance to LIVE. She had a blast and still talks about it. If all goes well we can do it again over easter. OK! She also wants to go back to kindergarten. Never did I think this was a possibility. I am so glad I was wrong. Please God...let me be wrong on so many other things, too.
Maybe we can start when we return from our Make A Wish trip. Mom is coming with us. It will be magical. Still packing. I am also planning another weeks vacation with the girls. Gotta do it while she can. We had her MAW party.
It was so good to see her wish granters again, such sweet individuals. JOSEPH is coming to a Branson theater. The girls can't wait. (I can't wait either) Got tickets and Lisa, Brooke, and Sydney will be joining us. Still don't know what happened to CATS in Little Rock. Maybe it will still come. MRI was yesterday.
Life is good. Way to short but good.

Lisa Hurley

Tuesday, January 18, 2005 7:10 AM CST

i cannot express how difficult yesterday was for me. i cried on and off ALL day long. i felt aimless, alone, and agitated. what horrors i personally went through the last three years. 3 years ago now i had a restraining order put out against my spouse. this is so very painful for me. i was given the strength to leave even though i didn't want to. i have never had a chance to deal with my divorce. i am furious over it. i married that man for life. period. i was forced to dissolve my vows for protection of my children. i still loved him. he was my husband. the only people who can understand THAT are those who have been there themselves.

then i just start to get used to the idea of it being me, Cassie, and Savannah, and my beautiful little bundle starts acting drunk. and the doctors tell me...she has a very large lesion on her brainstem...take her to 3 Gold...the Oncologist is waiting for you...we can do radiation and chemo...it will only buy her time...how much time...two months to two years.

then i lose my best friend. you know the type. the one that really knows everything about you. we could laugh, cry, joke, and talk. i have not even started to get over that. i was busy with Savannah.

the next 18 months were a blur or doctors, MRIs, rad and chemo, dex, pain, anger, frustration that it seemed the doctors were actually killing my child prematurely. i had to learn how to fight. i had to leave my anger outside my house. i had two little girls to get through HELL. one was going to go to heaven and one was going to watch her sister slowly die. i was torn. i lived on the edge. i honestly don't know how i did it. almost nothing that mattered in my life prior, mattered anymore. i had lost control of my life. lost control of who i was, who i had become. lisa no longer existed. people would tell me i am so strong. i love the Evanescence line...'there's nothing inside'. i just existed. autopilot. but at the same time, i was more aware than ever before in my life. my eyes were opened, truly opened. i loved deeper than ever before. i allowed change (acceptence is probably a better word). i was in such a hurry. i couldn't waste ONE moment of time. My responsibility was to provide Savannah with a full life before she went to our Maker. I went on overdrive.

I did it. I succeeded. And Savannah died. I am sad. It has been almost nine months. Sigh.

Now to what I was going to say. I got the guys situated at the house. I looked around and left. Carol, Syd's mom, said she had a breakdown over the carpeting being taken out. Thank God she told me that because I wouldn't have known what was going on. Carol, I wanted to call you, but they were working at the house. I had no where to go. And they were removing the carpet and I was losing it. I changed her diaper, she learned how to walk and crawl, we had picnics and tea parties, she watched tv, played horsey with daddy, had sleepovers, lost her ability to walk, swallow, talk, urinate, and then she ultimately died. all on the damn carpet. you see, cassie grew up on it too, but she is still with me. there is nothing that ties savannah to the new carpeting or the remodel.

jerry was at his first day at the new job sites, and i couldn't bother him. after work he had to look for an apartment, so i couldn't bother him. actually, i probably could of, i just refused to bother him. he had enough stressors. he didn't need his girlfriends dumped on him. we don't talk much about our grief to eachother anyway. i end up just listening to him and i build a wall around mine.

the faux walls are going to be beautiful. it is fun. i just have to get the anxiety out.

please pray for my ex husband. he sees his heart EP today. he has some very heavy options to weigh.

and I will be okay. i am a survivor.

Monday, January 17, 2005 7:11 AM CST

We got jerry up to Fayetteville yesterday. He got a hotel room for a couple nights. And will start apartment hunting after work today. It was a lonely drive home. And coming home to an empty house was even worse.

The flooring gets started this morning. Everything is moved except one piece of furniture they have to move. Within two weeks, it will look like a different home.

Saturday was hard for me. I was going through some of her paintings from the hospital when she had just started chemo. They had big hearts and said mom and Lisa and savannah on them. She barely had regained the ability to write at that time. Then there was one with a mommy bug and baby bug. That was we, also. Damn, it hurt. My precious baby. she was so focused on me and i couldn't do a damn thing to save her life. all i could do is love her, but it just feels like there should be more. it causes such an empty feeling, a feeling of my worthlessness, a failure as a mommy. i remember her looking at me with her sparkling blue eyes and i couldn't even offer her a chance at life. it is not fair to these wonderful children, and it is not fair to us parents. i know, life isn't fair. don't we know that?

Jerry and I were talking last week. He said something to the effect that I didn't know what bad luck was. Okay, that hurt...deep, it was cold. Now, I know he didn't mean it...BUT...is watching my daughter die not the worst luck in the world? Sigh. How quickly people forget. And I know we parents become hypersensitive. We aren't quite the same anymore. We are damaged...more compassionate, more loving, but our hearts have unrepairable holes in them. There is just as much chance as that repairing than there is of savannah walking through my front door. I guess, I get pissed off and hurt very easily when others start talking about how bad they have it with the insinuation that I don't know. I think us in this elite club know the ultimate.

Pray for all the other kids, my kids.

Friday, January 14, 2005 12:14 AM CST

God has called home another child. Tori earned her wings on Wed night. please stop by her web page, http://www2.caringbridge.org/ca/tori_and_sammy/
and leave a message. remember that just an, I'm sorry, is fine.

Jeanne just started a caringbridge page in memory of her daughter rachel. please stop by and visit also. www.caringbridge.org/pa/rachel

jerry is starting in Fayetteville, AR on monday. we will go up there on saturday to look for a little furnished apartment or something. and as of today, the carpeting has arrived, so they will start work on the flooring on monday. the painting is no where near done...painter has been sick. almost everything has been moved out.

remember to check out this months MACS kids. www.makeachildsmile.org Send a card or small gift to these kids. it made my girls smile during a horrible time in their lives. cassie religiously helps me monthly with the Builders club to get something to them and their siblings.

My quote for the day...
God is good. life just sometimes sucks.

back to business

Monday, January 10, 2005 7:18 AM CST

M Elton...I live 3 1/2 hours west of Memphis on I40. I am 5 1/2 hours from Rolla MO(that's where I went to school) and Columbia MO is 1 1/2 hours north on Hwy63(my brother and sister graduated from Mizzou). KC, I would have to look at a map to see. I was thinking about Memphis yesterday, while up the ladder. They have some incredible exhibits at the Pyramid. Oh, I happened to bring my JG collection you made for me to work with me today, and there you are in the guestbook. Way cool!

The house renovation is a nightmare. I can't get the border off the wall. Got 1/4 done and it took me 8 hours up a ladder (just ask Cassie). I have used hot water, special chemicals people swear by, and vinegar. The soft rose color for the bedroom is bubblegum pink. I think we are going to rag yellow on top to calm the pink down. Jerry thinks it will look like crap. The TV is unhooked now. The computer will get unhooked tomorrow for the duration. I understand why couples get divorced when building or renovating a house.

Right after school, Cassie has her first set of games to cheer for. Jerry and I have to work for the booster club. So I have a delay of a day for the painter.

It Girl Scout Cookie time, too!

Wednesday, January 5, 2005 7:14 AM CST

I apologize for the delay. Carol has even called to check on me. The house is coming along. Sort of. The hardwood and carpeting have been ordered and will arrive next week. The paint has been choosen and the painting has begun. Jerry patched (correctly) a large hole in my livingroom patched twice before by my ex. Believe it or not, I have left it there as a reminder of why I am divorced. But it is time for it also to be fixed. The painter is even impressed with the texture Jerry created for it so it would blend in. I have been moving stuff to the attic. I hired Cassie last night for an hour and a half. We made quite the team. We brought the origional boxes down for this endeavour. It is still going much slower than I thought. The livingroom is actually about completed as far as painting goes, but the Christmas tree is still up. It is hard for Cassie and I to remove the Christmas decorations during the twelve days of Christmas. Actually I can't find the box for the ornaments.

Lisa C was over playing house while I talked to Jeanne, Rachel's mom. She got Jerry to help. They had everything rearranged. And now I am putting a new wall in, too. An entrance way mini wall has been removed. My house will look COMPLETELY different. I keep telling myself...change is good. I finally told her to GO HOME because too much was going to bankrupt me, yet alone give me a true breakdown. Can you imagine explaining THAT to a shrink? I had a nervous breakdown. Why? Because I redid my house. But I never had a breakdown when my daughter died. Something is wrong with that picture.

Part of me is very apprehensive about this. You see, the home that Savannah knew and loved will be gone. It will have a facelift. And as Carol said...syd's feet were on that carpet. And then the carpet is discarded. Sigh! I guess we all go through this. But life goes on. I think us club parents take a break from life for a while. I did. I kind of would like to take another one right now. hahahaha!

Tami, if you read this...I hope all is okay with you. I am so scared someone hurt you. We will all come over and beat them up (one of Savannah's favorite things to say).

Cassie has been really good about wearing the patch. She hates it, but we talk about why it is necessary. I don't sugar coat it because she really needs to undestand this is serious. Not life or death, but permanent blindness.

During all this work at the house, the updates may be scarce. We are building a computer room, and everything will move. All this...and Quiz Bowl competition starts, Cassie's cheering at games starts, and Jerry should be moving. So a lot of stuff going on.

May everyones New Year be filled with special Blessings.

Thursday, December 30, 2004 7:54 AM CST

I had a breakdown of sorts the night before last. Guess I went on overload. Cassie and I had eye doctor appointments on the 28th. I knew she started having vision problems and I hadn’t been checked in 15 years. This whole ordeal really freaked me out.

I met Cassie and my ex at the drs. They start on Cass first. Obviously, she has severe problems seeing out of one eye. Whoa!!!! She can hit a target with a bow and arrow and she shoots her bebe gun like an expert marksman. She just recently has complained about having difficulty reading signs a good distance off. They dilate her eyes and start my exam. I go to another room. The dr comes in and dilates my eyes. He tells me after the tests they will give me drops to reverse the dilation. But Cassie they won’t do that to. He needs to look further into her eye problems. Well, she just needs glasses, I say. It is more serious than that he says. Okay, do you know where MY mind went? How many kid’s brain tumors are found at the eye doctors. I start screaming inside my head. They are not genetic, not this kind. I CAN’T do it again. Please don’t say we need a CAT scan to find out more. I just sat there and never spoke a word. Didn’t feel I needed to tell a stranger about my dead child. Then I join them again. He is looking in her eyes and asks us…have you ever seen her eye move in? Aggghhhhh. I could have vomited on the spot. I was shaking on the inside. He had NO idea about Savannah. He had NO idea. I said no. Are you sure? Yes, I am sure, her eyes have NEVER moved in. I am an expert at that. Mark said, what? An expert at moving eyes with Savannah, Mark. Oh yeah, we are experts he tells the dr. Conclusion, Cassie has amblyopia. Otherwise known as lazy eye. Her compensation in her strong eye and brain is incredible. We will TRY to fix the problem, but her body may be too old to allow her weak eye to strengthen. She will wear a patch for four hours a day for a month. She got the cutest glasses, but he warned us…they will be very strong and she may have difficulty adjusting. What added to my stress was the fact that this is totally preventable. A simple eye check would have found the problem and it is easy to correct prior to the age of eight. Cassie is almost ten. I have never had her eyes checked. Never. There was never a need for it, I thought. She had eagle vision. And now this. Yes, I was beating myself up. I KNOW it was ridiculas because who would have thought? But I still HAD to go through it in order to get on.

My parents move and my associated new flooring and painting are making my head spin. Little steps I keep telling myself. I have the floor picked out. I have my painter. I have decided to carpet my bedroom and put down the wood floor in the living and dining rooms. I am almost positive about the carpet color. I want my dining room walls marbleized. And I think I have picked out the paint colors. I started moving furniture to the attic. I am making progress, even with a mini breakdown.

Jerry bought me a painting. I had been visiting this painting at PJs Corner for almost a year. When I would be stressed I would stop by the shop and just look at it. I am not one to buy myself stuff. And I always told them, if it sells, it will go to a good home, and that was fine with me. It is a nude. She is taking a shower. Cassie said, oh God mommy, she is naked. I told her it is called a nude. It is art. It is beautiful. All you see is her rear end. And I have always liked nudes. It was hanging in the bathroom when Cassie and I returned from STL. I was very surprised. So here is the story…

I want that painting real bad. Jerry can’t afford it and neither can I (okay, I know I am getting new flooring). So I hatch a plan. I ask my parents for a check for Christmas so I can put it towards the painting, then I will eat beans for a month and come up with the balance. And Jerry told me he refused to shop at PJs Corner for me because my ex bought all my gifts there. Mark would walk in and tell Lisa C to find something I liked and wrap it. Needless to say, my home has beautiful and expensive items from that shop that my husband never picked out for me. Now Jerry is NOT going to do what my ex did, and he made this clear to me. Well, I go to visit my painting one rough day after work and tell Lisa if it hasn’t sold by Christmas Eve, I will get it. Give me a good price regardless of what it is and I will take it. Then she sees the sold sign on it. SHE starts to cry. I am so sorry. Yeah, my heart sank, but remember, obviously it was going to a good home. That was really the only thing I wanted for Christmas (okay, we know that isn’t true, but I can’t have my child back). Now, while in STL, I start to think…a real cool trick to play on me…that the painting is already mine and they hatched this outlandish plot to surprise me. Mark would have done it. But Jerry isn’t Mark. If I think like this, I will be very disappointed when it isn’t in my house. You have to understand, I am VERY hard to surprise. So I decide not to think of it further.

Jerry was disappointed at my reaction. I saw it, came out of the bathroom, and said thank you for my painting, and gave him a kiss. You didn’t act surprised. Well? Was I? yes and no. Am I happy with it? Absolutely! I love the game they played to get it to me. He told me that Lisa was crying because she was having to look me in the face and lie. I think God understands those types of lies. Bless her heart, the tears were real. What a friend! And what a lover! I am so blessed. That is my Christmas present story.

Tuesday, December 28, 2004 7:57 AM CST

More computer problems for the holiday season. I think I need to take it in to the puter shop to be cleaned. Sort of a computer enema.

Christmas was actually fine, at least for me, as far as Savannah was concerned. Jerry and I were both sick, bad colds. Cassie and I opened our presents to each other before we headed to STL. She got a portable DVD player. I am sure you understand why she received this early. STL was great. We got to see my cousin, Eric and Elke, and all my grade school girlfriends. Cassie and I traveled up to Lincoln IL to visit my ex’s step dads family. It was like old times.

We attempted to head back on the 23rd only to be stopped by the winter storm just 45 miles south of STL. Cars off the road EVERYWHERE. Many still had people in them. It was impossible to stop to help because we were all of ice. We turned around in Cape, got stuck ourselves, then unstuck with the help of two angels who took pity on two damsels in distress (this was not on I55), and headed back. Cass and I decided to stick it out until the 26th, so we went to the grocery store and bought hard salami and cheeses to hold us over and we bought some movies. We opened the presents my parents left for us under their tree. It was great, just she and I. My ex called and said the mountain pass was clear for the most part, so we struck out again on the 24th. There was just about 20 miles that had my knuckles white. The rest was slow going but tolerable.

While we were at my parent’s house, they were in Florida, and they bought a house. They will be moving. I am going to have a shrunk moved down from their house. I had to meet with a moving company while up there. Now I have to have my floors redone prior to the piece arriving. But the house has to be repainted first. Since I am removing the blue carpeting and going with hardwood, I can have colors on my walls. Way too much to consider. And all this has to be done in just a couple weeks. My brain is on overload. Then Jerry’s ‘big boss’ is coming to talk to him on Thursday about permanent relocation. I have learned to take one hour at a time. I will do so now as well. Otherwise, I wouldn’t be able to cope.

I finally got my traditional Christmas Eve diner made yesterday, the 27th. Actually, Cassie made the roladin. One of my favorite foods. My brother made Weinerschnitzel for his Christmas Eve dinner. That’s my other favorite food. My mom used to make bratwurst for Christmas Eve. This year they had Sauerbraten. Okay, can you guess what heritage we are? And there are NO pickles in my roladin. All I have to make now is spatzle and I am ready to eat.

I will write later about my present from Jerry.

Friday, December 24, 2004 8:47 PM CST

cassie and i made it home late this afternoon. we had quite the experience yesterday in out attempt. turned around, after getting stuck, and headed back to STL. we planned on waiting it out until sunday. my ex called and said Hwy 7 was passable. for those that don't know, hwy 7 is the mountain pass. this is the way we normally go, but i figured if there was bad weather i would rather be in route on a major interstater torawrds memphis as opposed to be stuck in the middle of the ozark mountains.

needless to say, we made it home. i couldn't make my annual Christmas Eve diner. i had Jerry put the Christmas ham in the oven. arrived home and found out, no potatoes. the road to my house was already in the shade and slick as snot(humor there). So we had ham, mac-n-cheese, and corn. I will add more later. Merry Christmas and God Bless!

Friday, December 17, 2004 8:08 AM CST

Saturday December 18th
first, thank you Celeste for the piniata and so much for the card. congradulations on your engagement. i smile from ear to ear when I think of it. you get it. you get life. i am honored that i know you through posts and cards. God bless you, erin, rory, and your mom. i LOVE the pics.

second to linda, your devotion astounds me. i look forward to your constant cards. my eyes well up at remembering all you have done for us.

third, to Mark for his package (I keep all my mail, and it didn't take long to accidentally run across the address connection). Bless you for making Cassie dance at ALL the dolphins and mommy dance at the signed picture of Amy Lee.

fouth,
Kim, thank you, but NO ring now. don't think he believes in them. plus I have so much jewelry, I need no more. I would have to replace my oma's wedding band or one of Savannah's rings, so I wouldn't wear it. (I joke, stocks would work...BUT THAT IS A JOKE)

Okay, today was busy, amaazing, wonderful, what we as humans are about, excruciating, tiring, and just good. I helped pass out over $6000 worth of gifts to underprivileged children. Cassie and I alone donated just at $400 worth of Savannah's stuff she never had a chance to open. After our party (oh the party...that is a novel of its own...those who you want to buy a house for and those that are trash breeding trash) I delivered over $300 worth of gifts to Salvation Army, then I delivered a bike to the grandma (my discretionary funds as Kiwanis president), made sure the excess food was going to get to Main Street Mission, then called it a day. Jerry and I were suppose to go to the Roadhouse for a Christmas party, but he didn't want to go. I just got the feeling he didn't want me there. He also backed out of doing the Christmas party with me. I know he doesn't deal with Christmas well, but I can't help but to take this personal. I will leave it, as he does his christmas thing, i will do what i need to do, and i guess we will meet again after the holidays. it was a good day. Even after cleaning all the nasty shit off my computer this afternoon. i WILL NOT let anything bring me down.

Oh, before I left this morning, I put on Savannah's necklaces and bracelets. I bawled (yeah, not cried, bawled, on the way to the party). Honestly, this was HER stuff, didn't know it I was ready to give them up. KNOWING, she always wanted to give to little girls that didn't have anything, yet I was giving away my baby's stuff that I wore. My life might be painful, but some things I have to do. It is NOT abot me. It is NOT about my loss. It is about continuing Savannah and her works. I took care of the parents because I was weak and didn't want to part with Savannah's stuff. Then I was stuck (understand, I have always been with the kids at these parties, not the parents as they do their shopping) with the kids. I couldn't do it. damn it, it was weak and about ready to cry that I couldn't honor savannah because i couldn't part with her stuff. a little girl walked up to the origomy table and got a box. it was empty and she kept shaking it, listening for something that wasn't there. i thought, it is filled with kisses sweetheart, and then i got a kick in the stomach...it is time. it was hard. i went to her and asked if she would like a special princess bracelet to put in her box. i took savannah's princess bracelet off my wrist, opened her empty box, placed it inside, closed it, and told her it is now filled with love. she smiled, she never spoke. it continued. all i have left is two bracelets and no necklaces.
blessing to all.
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I have been feeling real good about Christmas the past several days…real crappy about other stuff dumped on me…but back to happy for the holidays.

I have something for you to ponder. A hungry homeless man approaches a well-dressed affluent man on the street and asked for help. The man in the suit doesn’t want to be bothered, so he hands him $50. The hungry homeless man approaches another man of lesser means and asks for help. The man takes heart and gives him his last $5 and prays for him. Who has helped this man the most? I’ll put the answer at the end.

This may be my last post for a week, so I wanted to share our Christmas card this year.

Merry Christmas and Seasons Greetings
From the Hurley Girls and the Biker

It will be easier to list all the amazing things, good and bad, that happened since last Christmas.

Symptomatic once again. CPT-11 was ceased and Temodar begun, to no avail.
I had Savannah’s face tattooed on my arm.
The Hurley Girls plus family painter took a final vacation, hotels and all, to St. Louis.
Savannah went into hospice on March 22 and I have yet to change my calendar.
Savannah’s last request was for mommy to have a unicorn tattoo. DONE!
My mother, cousin, and sister came to help. God Bless them.
Jerry moved in to help with Savannah. He still lives upstairs (not quite in the attic).
Savannah beat the beast on 4-30 and earned her angel wings.
Mommy, Jerry, and Father Charlie never left her side.
Sacred Heart school dismissed early for Savannah’s funeral.
My sister and family sent us down to Florida for a week.
We went back to Give Kids The World with suitcases full of toys and money to donate.
I bought a Harley…The Savannah Hurley Harley.
Summer was filled with little girls at the house.
Jerry finally started work again in his field and works just an hour away.
I had angel wings added to the tat of Savannah.
Saw Nickelback, 3 Doors Down, Puddle of Mud, Evanescence, and Seether in concert.
Turned 40. All us grade school girlfriends got naked at Bull Shoals and partied.
Jerry turned 45 and surprised him by meeting up with his best friend.
Cassie is racking up Girl Scout badges.
I am President of the Russellville Kiwanis. And very busy.
Received a package from the band Evanescence. Way Cool!
Cassie and I, with the Builders Club, are active with MakeAChildSmile.
Cassie tested into Quiz Bowl and is 1st alternate. Way to Go Kitten!
We made it through Halloween.
Cassie is back in Pee Wee Cheerleading. She has the best moves out there. Scary!
Won first place for the Savannah angel tattoo at Sparks, OK. And second for the unicorn.
Cassie is looking more and more like me everyday, except much prettier.
Jerry completed a couple more paintings and is painting Savannah on the Harley.
Ashley, Steve, Savannah, Sydney, Jake, Eric, Pauline, Celeste, Allison, Severin, Chasidy, Isaac, Troy, Cheyenne, Jamie, Michelle, Maddy, Olivia, Katherine, Rachel, Caitlin and more
all beat diffused pontine gliomas this year and earned their angel wings.
Melody, Nicole, and Ray-Anne are fighting. My children. My life.
Cassie is coping remarkably well. Jerry is coping.
Savannah was of my body, she was of my heart, she was my life. There is no getting over. There is just getting on. There is NO greater pain or loss on earth.
I am also happier then I have ever been in my life. I feel safe and loved.
We are loved by family and friends.
Our Christmas blessing to all of you are Peace, Comfort, and Love!
In the words of the most amazing children in the world, my girls…
HAPPY BIRTHDAY JESUS!


This afternoon I gather all the toys for the Kiwanis Christmas party. Tomorrow is the big event. 265 children we will have toys for. It will be their only toys. We also have a waiting list if extra gifts are donated. This is what we are all about. This is what our fundraisers are for. What is hard to get over is the parents who abuse the system and will have their Wild Turkey and cigs but let their children go without. Now remember drink and I smoke myself. BUT in crisis time, my beer goes first, it is a luxury. My cigs would go next. I feel it is my responsibility to provide for my child prior to me. However, there are many many people who do not share this belief. It is hard to look past this and provide for the kids, but we continually do it. Now…this is important…many of these families do have the same principals as me. I try to focus on those. I remember the first party I worked, a woman approached me and asked if I could give her a box to put her daughters piece of pizza in. Her daughter was too excited to eat, but the mom didn’t want to waste food. She said she could eat this for lunch or dinner. I glanced at the trashcan and saw a couple half eaten pieces thrown away. She was the reason we do this. So I gave her a whole pizza and snuck it out to her car. That way the whole family could eat dinner.

I am trying to fulfill another request on my own, as president of Kiwanis. I spent a bit of time on it yesterday. I don’t want people to write about me in the guest books. Me sharing this info isn’t about that. It is about seeing real needs out there. I think this caringbridge family knows that. The red buckets are up again. Last year Savannah went crazy. We had to put money in every bucket she saw. She went out of her way to find the buckets, I think. I remember ringing the bell myself. I was thinking yesterday, when I went on this other Kiwanis mission, and passed the bucket without putting anything in. Do they think I am cold? Do they think I don’t care? They know nothing. Honestly, they probably don’t even care. I was at Kmart looking for another child; a special request…already had taken care of two children from the angel tree, and feeling guilty because I wasn’t doing more. I understand we can’t save the world by ourselves. I couldn’t even save my own daughter. BUT I tried. Maybe it is my guilt manifesting itself in other areas. I am babbling.

Cass and I leave Sunday. We will return Thursday evening. That way, Santa will come to our home on Christmas Eve. Jerry will be serving at the mission on Christmas Day. I will be cooking at home. I assume this. He never asked if I would join him. He just said he was going to do this. That is okay.

If I do not have a chance to post prior to Christmas…Bless you all…Bless you for caring…Bless you for praying…Bless you for bonding.

The man who gave him $50!

Tuesday, December 14, 2004 7:36 AM CST

I am sure I am in trouble with Carol for not posting sooner. It has been busy. I am doing okay. Had a good weekend. Jerry’s best friend came for his birthday this weekend. Cassie made him a cake and iced it. I made everyone wear little party hats. Jerry and Cassie bought those popper things that explode confetti all over. I baked a pork tenderloin with roasted potatoes and the works. I got a really good picture of David flipping my off while donning his party hat. And another one of him eating confetti with his cake.

Sunday Jerry took Cassie ice skating. It was her first time ever. She got pretty good. Only fell twice. I watched for a while and then ran to Walmart to get film, so the event was documented. She was so cute. She wants me to get on the rink with her. I haven’t done that since I was 13. THAT is a long time ago. The rink is temporary and will be here for a couple more weeks. Maybe I will. I just don’t have much padding on my behind for when I fall.

Cassie has her Girl Scout ceremony tomorrow. I wonder how many badges she will get. She has been quite busy. Then Friday we set up for the Kiwanis Christmas party. Jerry said he will help. He is a very good man. Hopefully, we can get done early enough so we can go out. Then Sat is the big party. Santa is coming. There will be games and pizza while the parents shop. It will be a pretty long day.

Then on Sunday, off to the STL. Cass and I are even going to venture to Lincoln, IL to see my ex’s relatives. We got lots of people to see in St. Louis. Still hadn’t even talked to some of them about getting together. Enough for now. Gotta get to work..

Thursday, December 9, 2004 7:58 AM CST

December 10th
I pulled this off of Melody's page. I hope Rob doesn't mind. Lazy fingers, I guess. He got it off Cheyenne's page. We will also be participating in our house. Hugs to you all.

I would like to share something with you all and I am going to pull it off of Cheyenne’s page to save my fingers a little typing. Thank you Roy, we will be joining your family in our own house on Sunday.



The Compassionate Friends, an organization of bereaved parents, is having their 8th Annual Worldwide Candle Lighting on December 12th at 7pm in each and every time zone, as we remember all children that have gone to Heaven. With everyone’s participation, there will be candles burning in memory of all our children throughout the entire 24 hours of December 12, 2004. Please participate if you can and please pass this information to everyone you know. This is quite a tribute to our wonderful children that have preceded us. Thank you!!


I dreamed this morning of Savannah, skinny Savannah. I dreamed she still had her brain tumor and she was too dizzy to go to kindergarten that day. I remember picking her up and setting her on top of the table to sit while I prepared a pallet for her in the living room. She was light as a feather. Just 40 lbs, pre diagnosis. I then left for work. I forgot her at home. I was so scared. How could I forget my child, one with a brain tumor, and go to work? How? I drove home, scared that she would be scared. But she was asleep on the pallet. I had even turned off all the lights when I left. I had TOTALLY forgotten her. Oh God, how could I forget my baby? I am so sorry. Then the alarm went off.

What interests me about the dream is that she was prediagnosis weight. It takes a long time for most parents to dream of their children skinny. The steroids make them grossly obese. Their identity is ripped away. They obviously become a very sick kid of monstrous size. We love them no less, but this I think forces us to start mourning while they are still with us. It is a physical difference that reminds us every time we look at our children. She had a pontine glioma and she is going to die. No matter what I do, she will die. As parents, we do every thing in our power to give them quality of life, buy them some time, and wait for a miracle. This time, she was skinny. My mind can remember. It can go back further than 2 years. But she was still so very sick.

I want just one thing. I want Savannah back with me, healthy. And I cannot have that. She was never mine to have. She was God’s child. All I could do was borrow her for 7 years. I wanted to borrow her for life. It is just not fair. I miss her. I have Cassie. She is so beautiful. And I wouldn’t trade her for the world. But I have two children. And I am empty.

When I woke up, I was fine. Quiet but fine. Even though Savannah was sick in the dream, at least I dreamed about her. Then I had to get up Cassie. Let’s just say this was not a good morning. She was in a fine mood, but she wouldn’t move. I ended up yelling, screaming, and cussing. Then I brushed her hair. Needless to say, I told her, NEVER let your mother brush your hair when she is pissed! She was in tears. Good. Her bedtime is now 8:30 not 9. And NO TV or computer. She made it to the bus, barely. She got on the bus, and I lost it. I bawled all the way to work. I was sad but happy that I dreamed of my sweet baby girl. Then I had to get angry. This was not a morning that it was easy for my to get angry. It seemed like Cassie kept trying and trying and kept putting her laziness in my face. I even asked her if she was trying to make me mad.

Then I thought that I needed my rock. But then I felt alone. Ever since my birthday weekend at Bull Shoals, it has been different. That was the first time we were separated. We both were so lonely, wept, and seemed lost without each other. It seems like we still are. Kind of makes me feel sad and used. This could still be grief. Grief is so hard on anyone. Many marriages can’t survive something we have lived through. My first wouldn’t of. And God saw to it that it was over before our new journey began, for Savannah’s sake, for the fight to give her time.

We worked the Santa Hotline last night. It was a lot of fun. I learned most kids have broken homes. And a high percentage don’t live with their mother. I had to quickly change my question from…do you help your mommy? To… do you help out at home. It even gets difficult asking how many brothers and sisters do you have (I want to make sure everyone there gets to talk to Mrs. Claus and to find out if they are good to their siblings). Well, I heard about stepbrothers and sisters, half brothers and sisters, my brother lives with my mom, my sister lives with my grandma, etc. One little boy told me he lived with his grandma. He wanted some clothes and shoes for Christmas because he really doesn’t have nice clothes or many of them. He was so sweet. I wanted to ask for his address myself. No child should have to ask for clothes for Christmas, unless they are designer or special. Clothing should always be provided. All in all, it is very fulfilling.

----------------------------------------------------------------------------------------------------------
A little more of her old web site entries. personally, something like this should be published.

3/26/2003


I have been meaning to post the following for quite a while. What Not to tell a cancer parent, and how to help a cancer parent. Everyone is well meaning, but because of their ignorance on how to deal with us, we may all lose out on support. This will hurt many people. This will also make many others feel good. The point is, unless you have lived with a dreaded disease how do you know how to help.
I have talked and listened to cancer parents world wide. I have talked with clergy. I have talked with staff dealing with critically ill and terminally ill children. I have talked with people who lost parents, spouses, and children. And I know now from experience what hurts and what overflows my heart with joy.
What NOT to do...
1) Do not tell us God has physically healed our children if we believe strong enough. Why do you already blame us for their death? We have the rest of our lives to wonder what if what if what if. We don't need your guilt. We are busy parenting critically ill children. We don't need breakdowns because you try to enter our fragile yet extremely strong minds. We are not in denial. You are. The arrogance these people have is unbelievable. It borders on pride.
2) Do not tell us general prayers are not heard. Your church has the only path to God? Remember the Jews are God's chosen people, not us Christians. I know prayer works. I see it everyday. I see it in my household, with my children, and in your childrens eyes.
3) Do not question our faith. What gives you the right? You come to us under the guise of helping and try to convert. Offering additional spiritual aid from another church is welcome. It is what Christ taught us. You only make our faith stronger and you become a fool.
4) Do not tell us about other miracle cures. The other children may be miracles and ours may not. Again why do you already blame us for their death. Before you open your mouth and say something stupid, research what we are dealing with. FYI highly progressive cancers are the ones easiest treated with a higher success (miracle) rate.
5) Do not think for a minute if we talk about death we have given up. Hope we have. Hope we have always had. How can a parent not have hope. You question our loving abilities now? We see a broader picture. We now live on a different plane. Not better just different. And also why do you fear being with your lord so much? Death is the path. Just because we can acknowledge death certainly does not mean we want to rush it. Don't assume it. We are not in denial. You are.
6) Do not whisper. If you want to know ask us. Don't ask someone else. Are you scared? So are we. We have children at home and now we have to watch adults acting like children. Grow up.(Lisa's personal thought...this really seems like gossipping to me).
7) Do not come from out of town to visit. We don't have time to entertain. And sorry if you come, we must entertain. Come to help. Cook for us. Clean for us. Make yourself useful. Make us go out and clear our heads while you play games with the kids. Make us make up time for work. We no longer live a normal life. We live a crisis life. Do you want to say goodbye? Do you just want to see? Make a difference to the child. Bond. Spend one on one time. You make us parents feel the best when you touch the lives and hearts of our children.
How to help a cancer parent...
1) Do not abandon us. It is scary. Don't leave us alone on our journey. Please take our hand. Come over. Sit with us again.
2) Understand that we no longer have the time to spend on the phone anymore. Because we do not talk to you anymore does not mean we don't love you and need you.
3) Babysit. Take our children for a sleep over. Let mom and dad have a night as a married couple. We will not voluntarily leave our sick children. We are kidnapped, and we need that.
4) Do something special for the siblings. They have to deal with less attention, doing without, having a sick sibling, seeing their parents struggle with something alien, know there are secrets they are not privy to. Plus they have to be a normal kid. Take them for a special night once a week. Pick them up from boy scouts or girl scouts. Make it a commitment.
5) Don't forget about us. Keep in touch. Many will forget in a few months. We will still be living differently. I was told by another cancer mom. Everybody forgot. It hurts so much.
6) Ask what we need, what can you do. If the answer is I don't know, find a nitch for yourself to fill in our lives. We are a little busy at the moment, we don't want to ask for help, but we need help.
7) Hold us. Someday you may walk up on us breaking down. You don't have to say anything. Just put your arms around us. What we need is a physical touch, a physical presence. Cry. Cry with us. Why not? It is healthy. It is ok. Do not think me to harsh. Well-wishers can inadvertently hurt us very badly. We already have enough hurting us very badly. This is not just me. It is due to not knowing.
God Bless you all.

Wednesday, December 8, 2004 2:45 PM CST

Thank you Carol, thank you Carol, thank you Carol. I had a bit of a headache this morning though. And most definitely very tired. What is so helpful to me, and so helpful to her is that we lived the same nightmare at the same time. Our children passed away just two weeks apart. Sydney and Savannah looked the same. Well, it seems like all pontine glioma kids look the same. Cassie always comments on the girls…she is sooooo cute, she looks like Savannah. See? We had the dexamethasone nightmare. Don’t know if I ever wrote about the facial hair and some pubic hair that Savannah got. Well, she was not alone. The cancers were most likely different types, but because of location, classified the same. Sydney lived 8 months and Savannah 18. They did both get about 3-4 months of quality time after diagnosis. We can talk about wanting our kids to die, without worry about an outsider thinking we are horrible. We can talk about being so tired physically, emotionally, mentally, and spiritually. We can talk about the disease itself. How they started slowing down, the eyes turning in, and the paralysis. The loss of the ability to walk, to write, to see, maybe to hear, to swallow, to control their bladder, and then to breath. Sydney did not suffer from seizures at the end as my child did, thank God. This elite club SUCKS. But at least I am not the sole member. Although, I honestly wish I was. It hurts my soul to see another child and family go through this.

I worked our Santa Hotline last night. It was a bunch of fun. Jerry has done it every night. We will work again tonight, the last night. Sunday was very bad for me. The funeral home had a memorial service. I dressed accordingly and off we went. It was sooooooo crowded, not a place to park. I made Jerry drive away. And I went down. I didn’t realize this until after I said I wanted to see Lisa C at work, then I started crying. I will stop by tomorrow and pick up Savannah’s ornament. Saturday I was so busy with Kiwanis. In the am, the Builders Club decorated their tree the Kiwanis donated for ‘Tinsel Town’ downtown. Then off to our storage shed to pack up toys for our Christmas party for underprivileged children. Checking on our toy drive, and packing two more boxes of toys at home. Oh yeah, and Circle of Friends, breakfast with Santa for childrens hospital started my day. I thought I was handling it. I really did. Then Sunday happened.



----------------------------------------------------------------------------------------------------------
A little more of her old web site entries. personally, something like this should be published.

3/26/2003


I have been meaning to post the following for quite a while. What Not to tell a cancer parent, and how to help a cancer parent. Everyone is well meaning, but because of their ignorance on how to deal with us, we may all lose out on support. This will hurt many people. This will also make many others feel good. The point is, unless you have lived with a dreaded disease how do you know how to help.
I have talked and listened to cancer parents world wide. I have talked with clergy. I have talked with staff dealing with critically ill and terminally ill children. I have talked with people who lost parents, spouses, and children. And I know now from experience what hurts and what overflows my heart with joy.
What NOT to do...
1) Do not tell us God has physically healed our children if we believe strong enough. Why do you already blame us for their death? We have the rest of our lives to wonder what if what if what if. We don't need your guilt. We are busy parenting critically ill children. We don't need breakdowns because you try to enter our fragile yet extremely strong minds. We are not in denial. You are. The arrogance these people have is unbelievable. It borders on pride.
2) Do not tell us general prayers are not heard. Your church has the only path to God? Remember the Jews are God's chosen people, not us Christians. I know prayer works. I see it everyday. I see it in my household, with my children, and in your childrens eyes.
3) Do not question our faith. What gives you the right? You come to us under the guise of helping and try to convert. Offering additional spiritual aid from another church is welcome. It is what Christ taught us. You only make our faith stronger and you become a fool.
4) Do not tell us about other miracle cures. The other children may be miracles and ours may not. Again why do you already blame us for their death. Before you open your mouth and say something stupid, research what we are dealing with. FYI highly progressive cancers are the ones easiest treated with a higher success (miracle) rate.
5) Do not think for a minute if we talk about death we have given up. Hope we have. Hope we have always had. How can a parent not have hope. You question our loving abilities now? We see a broader picture. We now live on a different plane. Not better just different. And also why do you fear being with your lord so much? Death is the path. Just because we can acknowledge death certainly does not mean we want to rush it. Don't assume it. We are not in denial. You are.
6) Do not whisper. If you want to know ask us. Don't ask someone else. Are you scared? So are we. We have children at home and now we have to watch adults acting like children. Grow up.(Lisa's personal thought...this really seems like gossipping to me).
7) Do not come from out of town to visit. We don't have time to entertain. And sorry if you come, we must entertain. Come to help. Cook for us. Clean for us. Make yourself useful. Make us go out and clear our heads while you play games with the kids. Make us make up time for work. We no longer live a normal life. We live a crisis life. Do you want to say goodbye? Do you just want to see? Make a difference to the child. Bond. Spend one on one time. You make us parents feel the best when you touch the lives and hearts of our children.
How to help a cancer parent...
1) Do not abandon us. It is scary. Don't leave us alone on our journey. Please take our hand. Come over. Sit with us again.
2) Understand that we no longer have the time to spend on the phone anymore. Because we do not talk to you anymore does not mean we don't love you and need you.
3) Babysit. Take our children for a sleep over. Let mom and dad have a night as a married couple. We will not voluntarily leave our sick children. We are kidnapped, and we need that.
4) Do something special for the siblings. They have to deal with less attention, doing without, having a sick sibling, seeing their parents struggle with something alien, know there are secrets they are not privy to. Plus they have to be a normal kid. Take them for a special night once a week. Pick them up from boy scouts or girl scouts. Make it a commitment.
5) Don't forget about us. Keep in touch. Many will forget in a few months. We will still be living differently. I was told by another cancer mom. Everybody forgot. It hurts so much.
6) Ask what we need, what can you do. If the answer is I don't know, find a nitch for yourself to fill in our lives. We are a little busy at the moment, we don't want to ask for help, but we need help.
7) Hold us. Someday you may walk up on us breaking down. You don't have to say anything. Just put your arms around us. What we need is a physical touch, a physical presence. Cry. Cry with us. Why not? It is healthy. It is ok. Do not think me to harsh. Well-wishers can inadvertently hurt us very badly. We already have enough hurting us very badly. This is not just me. It is due to not knowing.
God Bless you all.

Lisa Hurley

Thursday, December 2, 2004 3:26 PM CST

Day by day, I travel the road of my life. Don’t really know where it is going anymore. I feel very lost and confused right now, kinda empty. I do know that I have Cassie. And I know I want Savannah home, and that will never happen. I assume this is grieving. I have always loved Christmas. I have always had a festive house. The tree always lit. And decorations everywhere. I rearranged the decorations this year. I was scared to set it up the way I always had in the past. The little houses aren’t up, yet. Savannah used to set those up and then she and Cassie would surround them with snow.

Please pray for Amy. She passed away on the 30th. I had just learned about her and posted on week before to her website. She was returning to the hospital because of fever spikes. Us cancer parents know all about those. Just 19. What a brave young woman!

Check out Makeachildsmile.org this month. Savannah from OK is a featured kid. Last month I knew two of the children. Small world. Please send a card or small package to these kids. It truly does make the child smile. Don’t forget the siblings. This is very important!

I am keeping busy. Builders Club, girl scouts, cheerleading, Kiwanis. We have the toy drive (postponed from last weekend), Christmas with Santa breakfast, a memorial service at the funeral home all to attend this weekend, as well as making up time at the office and preparing Christmas cards to send out. Had absolutely NO time last year.

Cassie and I are heading north to St. Louis for a few days prior to Christmas to see some friends. I will be off anyway and it will keep us from being in our house.

Remember Tyler in your prayers. And please please please hold Melody and RayAnne in your hearts.

-----------------------------------------------------------
a little more of her old web site entries. personally, something like this should be published.

3/26/2003


I have been meaning to post the following for quite a while. What Not to tell a cancer parent, and how to help a cancer parent. Everyone is well meaning, but because of their ignorance on how to deal with us, we may all lose out on support. This will hurt many people. This will also make many others feel good. The point is, unless you have lived with a dreaded disease how do you know how to help.
I have talked and listened to cancer parents world wide. I have talked with clergy. I have talked with staff dealing with critically ill and terminally ill children. I have talked with people who lost parents, spouses, and children. And I know now from experience what hurts and what overflows my heart with joy.
What NOT to do...
1) Do not tell us God has physically healed our children if we believe strong enough. Why do you already blame us for their death? We have the rest of our lives to wonder what if what if what if. We don't need your guilt. We are busy parenting critically ill children. We don't need breakdowns because you try to enter our fragile yet extremely strong minds. We are not in denial. You are. The arrogance these people have is unbelievable. It borders on pride.
2) Do not tell us general prayers are not heard. Your church has the only path to God? Remember the Jews are God's chosen people, not us Christians. I know prayer works. I see it everyday. I see it in my household, with my children, and in your childrens eyes.
3) Do not question our faith. What gives you the right? You come to us under the guise of helping and try to convert. Offering additional spiritual aid from another church is welcome. It is what Christ taught us. You only make our faith stronger and you become a fool.
4) Do not tell us about other miracle cures. The other children may be miracles and ours may not. Again why do you already blame us for their death. Before you open your mouth and say something stupid, research what we are dealing with. FYI highly progressive cancers are the ones easiest treated with a higher success (miracle) rate.
5) Do not think for a minute if we talk about death we have given up. Hope we have. Hope we have always had. How can a parent not have hope. You question our loving abilities now? We see a broader picture. We now live on a different plane. Not better just different. And also why do you fear being with your lord so much? Death is the path. Just because we can acknowledge death certainly does not mean we want to rush it. Don't assume it. We are not in denial. You are.
6) Do not whisper. If you want to know ask us. Don't ask someone else. Are you scared? So are we. We have children at home and now we have to watch adults acting like children. Grow up.(Lisa's personal thought...this really seems like gossipping to me).
7) Do not come from out of town to visit. We don't have time to entertain. And sorry if you come, we must entertain. Come to help. Cook for us. Clean for us. Make yourself useful. Make us go out and clear our heads while you play games with the kids. Make us make up time for work. We no longer live a normal life. We live a crisis life. Do you want to say goodbye? Do you just want to see? Make a difference to the child. Bond. Spend one on one time. You make us parents feel the best when you touch the lives and hearts of our children.
How to help a cancer parent...
1) Do not abandon us. It is scary. Don't leave us alone on our journey. Please take our hand. Come over. Sit with us again.
2) Understand that we no longer have the time to spend on the phone anymore. Because we do not talk to you anymore does not mean we don't love you and need you.
3) Babysit. Take our children for a sleep over. Let mom and dad have a night as a married couple. We will not voluntarily leave our sick children. We are kidnapped, and we need that.
4) Do something special for the siblings. They have to deal with less attention, doing without, having a sick sibling, seeing their parents struggle with something alien, know there are secrets they are not privy to. Plus they have to be a normal kid. Take them for a special night once a week. Pick them up from boy scouts or girl scouts. Make it a commitment.
5) Don't forget about us. Keep in touch. Many will forget in a few months. We will still be living differently. I was told by another cancer mom. Everybody forgot. It hurts so much.
6) Ask what we need, what can you do. If the answer is I don't know, find a nitch for yourself to fill in our lives. We are a little busy at the moment, we don't want to ask for help, but we need help.
7) Hold us. Someday you may walk up on us breaking down. You don't have to say anything. Just put your arms around us. What we need is a physical touch, a physical presence. Cry. Cry with us. Why not? It is healthy. It is ok. Do not think me to harsh. Well-wishers can inadvertently hurt us very badly. We already have enough hurting us very badly. This is not just me. It is due to not knowing.
God Bless you all.

Lisa Hurley

Tuesday, November 30, 2004 7:06 AM CST

Please pray for Tyler and his family. He is another pontine glioma kid that has slipped into a coma. I feel for his family during this holiday season.

I had a very difficult time with the Christmas decorations. Cassie put up the tree while we watched the new Evanescence DVD. Everything else I did alone. That was the hardest, to handle it all by myself. But then again, I have always felt alone, so it is par for the course. All I have left to do is the village. That was my youngest’s favorite part of the decorating. I will do this alone as well.

The stockings are what got me. No words can describe the absolute agony.

Monday, November 29, 2004 5:22 AM CST

christmas decorations. i can't tell you how hard that is. the tree looks beautiful, but it is SO empty. last year the house seemed so full. does cassie feel it?

jerry is going to reload windows today. so i may be down. please continue to check on the other kids.

love,

Lisa

Wednesday, November 24, 2004 6:13 PM CST

8:30pm
momma just breaking down. i am trying. i am trying so hard. i keep going to other sites and I am losing it. just me alone. and I miss my baby. Can you hear my screams? Can I keep pretending? Can I put on a face tomorrow? How am I going to do it? I can be quite the actress. i haven't had a day this bad in a long time. i don't want to be here. why do we get so wrapped up in ourselves, that we miss the pain others are going through? are we all that selfish? all those other mommies and daddies and brothers and sisters, alone, without their child and sibling! i totalled up those who died this year from dpg, 20. 20 God damn it! these are those that i know, my 7 year daughter included. MY 7 YEAR DAUGHTER, a child. Damn it damn it damn it. it is time i put on a survivors face.
--------------------------------------
i know i already posted tonight...please check the journal history...

i have to tell on myself...the reason...because i am trying desperately to cope with my first holidays without Savannah. i have been told...to break depression, do something totally different, not normal for you...

so...here we go...
I am watching the new Evanescence DVD. I am into it. You have GOT to check it out. The scences from Little Rock, I was there. I was one of the fans SCREAMING the whole time (okay, singing, at least). The apes...I saw them, the men in drag...I saw them. Way COOL! The point is, I have to pee SOOOOOOO bad. But do I hit pause? Nooooooo! I stand up doing the peepee dance for 5 minutes. You know the dance, hopping up and down, bending over, saying ohmagod,ohmagod, and not doing anything about it. Now the funny part...FINALLY, when the part is complete, I run to the bathroom, yanking my britches down as I go. Wham, my butt hits the seat...RELIEF, such force it goes out between the seat and the camode, all over the floor, my sweatpants, and legs. I am looking in absolute HORROR! (oh, if Savannah could have seen. I doubt she could have stopped laughing at the specticle). I don't know what to do. Of course, I keep peeing but back up a little. But the mess!!! Then I started to laugh. What else could I do? and laugh I did. I have been SOOOOOOOOOOO stressed out. I think it came out in laughter. I was the crazy woman, who just peed all over the bathroom and herself, laughing hysterically. (no one was at home but me). I was STILL laughing when I finished, when I wiped up the floor, when I washed the floor. I guess the tears from earlier took a break. Then I thought, this was something I don't do. If I tell the world about it, this is something I would NEVER do. So I am sharing it with all of you. Hence, to try to not party poop the upcoming event tomorrow.

I am thankful from the bottom of my heart for all of you. I mean that. I thank God, every day for your support, your love, your cyberhugs, and just being there as we try to get to the next day.

this is for stephanie and amy...
my recommendation, mine only
leave a post there. the followers will flog that person. i am not mean spirited by nature, but when I had my post, they attacked with a vengenge. I am much more willing to attack on someone elses behalf than my own. There are many reasons WHY a reponse was not given to this mystery person.
1)they are an unknown? this can be very scary. Have you ever bee TAKEN before? Is this person real? There have been other caringbridge incidents that I AM aware of? We have GOT to protect ourselves and our children, families.
2)Maybe she did repond? Hell, I just found out ALL my emails were never received for over a year! And I, ought to have figured that out. All those people I reached out to, and all that was worth was me wiping my hiney.
3) Time is crucial. If you live in a crisis situation, family and friends eat it up. Not to mention the sickness from treatment, work, updating the site, wellwishers, people who stop by, who MUST be entertained, church, it goes on and on. There is NO time to get a good night sleep. I NEVER expected the world to stop because of ME or my CHILD!!!!! But, I still cry because there was not enough time for me to talk to everyone, to thank everyone properly.
4) they are a weenie! where is their website, their email? huh? they can spit venom and then hide in anomisty! they are a joke.

Leave a post there. let the world see the cowardness. oh, THAT shows their true colors. Yes, I do have empathy. Yes, I understand ANGER well. But I do not ATTACK another. THAT is EVIL.

This is when I am kicking, because my outgoing email does NOT work. I cannot make this private. However this must be addressed. So, with a quick prayer, I walk on a limb and make this public. God forgive me if it is wrong, I do not know another way with what I have at my disposal. Please go to Amy's website, www.caringbridge.org/page/amymareck, leave a message of support. If you are just nosey...DON'T BOTHER...if you really care about the hurt and pain of another individual, go and leave a message of support. Do not lower yourself to the level of the mystery person from 11-23 at 2am and spit venom. Leave something nice. Show the spirit of caringbridge. Just saying 'I am sorry you had to endure such a post' suffices. We can all be better.

On the eve of thanksgiving, prove what we are thankful for. Prove our worth. Go to the site with LOVE.

Monday, November 22, 2004 11:01 AM CST

Wed November 24th 2:30pm

Happy Thanksgiving to ALL!!!
Please please say a special prayer for all the families who begin their first holiday season without their child or loved one. I am doing something different this year. I will spend Thanksgiving with Jerry's family in OK. I will NOT be cooking a thing. I got 2 pies from one of Cassie's school fundraisers. Lucky Me.

All the wonderful posts. They came at a very trying time for me. I cried myself to sleep last night. Cassie was at Jerry's aunts house and he was out shopping. This morning, again I lost it, on my way to pick Cassie up and go to Kiwanis. Tami writes about her outbursts. Well, I understand that well.

Cassie is giving me a sneak peak at my Christmas present, the new Evanescence CD/DVD. I will return it to her to wrap and will have to wait to unwrap it on Christmas Eve. I hope Nicole received hers!

Prayers are being sent for safe travel. And may Thanksgiving be a peaceful wonderful time instead of an anxious trying time. God Bless you all!
------------------------------------------------------------------------------The weekend was such a mixture. Fri I went to the movies with Lisa C. We saw SAW. She and I love scary movies. And we enjoyed it. Yuck yuck yuck yuck yuck. Lisa C. and I went to the movies 17 years ago. The beginning of our friendship. That made it special.

Saturday we actually stayed home and entertained. We made a big sticky mess in the kitchen, attempting to make blue kamikazes. You realize you have to keep sampling to achieve perfection. Well, either they were perfect or we ended up not caring. Needless to say we slept in on Sunday. The four of us had a blast.

Sunday was the Memorial service for the ACH Hem/Onc kids that passed on this year. It was beautiful. Very sad. But necessary. You know, Jerry actually cleans up well. AND it was the first day his hair has gone in a ponytail and not fallen out. It was sososososo good to see Carrie again, the doctors, and other 3Gold workers. I was told by the pharmacist to remove my jacket…the tattoo. I had several comments, of course. All good, from…the most beautifully detailed, now THAT is a reason to get a tattoo, what an honor. Even dr stein came over to see it. Part of me was embarrassed by the attention it brought. But you know, we are all grieving, and if someone can see an example of an action that has helped my grief, then who am I? I have always said us parents enter an elite club that we never asked for and never wanted to be a part of, but we are here. One of the speakers brought this same thing up in slightly different words. THIS is what I sought. Remember my entries on not being able to just go to counseling. I had to talk to someone who knew. Not a parent of a child that died in a car wreck (not to minimize their pain at all) I needed someone who knew, who lived, who understood. These people understand. So I reach out. It hurts like a mother, but it also helps. Sisters-in-arms or brothers-in-arms. I got it…Parents-in-arms!!!

Savannah still sits on my computer desk. She is above my shoulder level. She is able to look over me while I check my kids, while I cry, laugh, cuss, and run my fingers over the pictures of my children on their web sites. She is there when I read all the posts on my pedibraintumor group. I talk to her. I touch her box. I embrace the crucifix that rests beside it. I miss my baby. Her life was stolen. She died 6 months ago, but it was stolen 2 years ago. The radiation changed her. Well, I bet anytime you FRY your brain with a max amount of lifetime rads…you’d be changed, too. Yet alone having a 2-½ inch tumor in your brainstem. I think that was a bout of anger that just came out. What I was trying to say is that I miss her. It does not get easier. The shock has subsided. It is being replaced with emptiness, loss, longing, and yearning. I miss her soft lips, almost like butterfly wings when she kissed me. I miss her pinning me to the bed (her snuggling). I miss her scent. Her porcelain skin. I miss her laugh, her sharp wit, her patriotism (a lot of adults can learn from that), her performances. Oh, her moves could have put a flush on a professionals face. I miss her putting her hands on her hips to show me her displeasure. Oh, the touches of an angel, when she would stroke me face. That child was always touching me. Okay okay…those who know me also know that I always touched her.

I read these old journal entries. I forgot a lot. I think my brain shut it out. But then when I read it, it is back in my face. I really do think it is your body protecting itself from acute trauma. Trauma we lived every time we looked at our child. Now it is over and I desperately want it back. Just to hold my baby once more, to breath her in, tumor or not. I want savannah to come home. She belongs with mommy.

-----------------------------------------------------------
3/11/2003


Savannah is an all grown up 6!!! What a day! 18 children plus their parents, teachers, one of our priests, and grandparents. I have a large house and it was packed. The kids scarfed down almost two ice cream cakes.
This was the first birthday we did not make our own. I delegated as they walked in the door. Video camera, 35 mm, gift list, Kool-Aid pourer, etc. It was the most beautiful mayhem I ever saw. Savannah screamed with excitement over every present she got. That had to make every kid feel special. God, I am so honored to have her as a child!!!
Savannah picked out a piñata. The kids were so excited. It couldn't have done any better. I got to watch everything without having a mechanical device at my eyes. And we watched the video later. Everyone had a grand time and I didn't even looked stressed. Miracles do happen every day. It lasted just at two hours, too. Perfect timing. We were all tired, but no rest for the weary. Too many new presents to play with. Thank you cards are still in the process, but I'm getting there. Savannah is signing them. I have never seen so many cards in my life.
The heavens opened up and chemo angels poured out. She must have 25 at least. We are so blessed. I have never felt so humbled in my life. I have learned to accept for my childrens sake. I have always been so independent my entire life. I guess you really can teach an old dog new tricks. Thank you all for posting birthday wishes on the web site. We will treasure them forever. She is doing so well now.
She yells and fights with her sister all the time. This is a lot worse then pre dx, but apparently common personality changes. Hers are so minor. It is still great to hear her able to raise her voice. She is going up and down the steps again. Scares me to death. You tell her and tell her but she does it any way. I try not to be too hard on her. I really wonder if she hears but it no longer quite clicks in her brain. After all we are dealing with the brain stem.
I have noticed other little things that don't seem to connect with her anymore. Don't think I am down. I am so happy I have my bundle of joy with me. We danced last night. Really!!! My thighs hurt. She has an ear infection though. But as always, no complaints, mommies just know these things. Another round of antibiotics.


I sent my list of do's and don'ts to my support groups. I wanted to know if I was out of line. I received the most amazing responses and stories. But not one was negative on what was written. There were quite a few added though. I would laugh so hard at one then I would bawl like a baby on the next. The common thread was nobody means to hurt, but they just don't know what to do or say, and may not understand our priorities have vastly changed. Hugs to all.

Lisa Hurley
2/14/2003


This journey is hard. God took the hand of another child on Sunday, Tara. http://members.rogers.com/tarahouston/ This is just behind little Erin who became an angel on 1-17-03. They fought a battle children should never have to fight. They are warriors. I cannot control the tears today.
I follow the journey of other children with this dreaded disease. I know diagnosis dates and angel dates. They give me strength. This poem is so very enlightening... and helps to focus ~*~*~*~ Thy Will Be Done ~*~*~*~.
A Child Of Mine
Edgar Guest
I will lend you, for a little time,
A child of mine, He said.
For you to love the while he lives,
And mourn for when he's dead.
It may be six or seven years,
Or twenty-two or three.
But will you, till I call him back,
Take care of him for Me?
He'll bring his charms to gladden you,
And should his stay be brief.
You'll have his lovely memories,
As solace for your grief.
I cannot promise he will stay,
Since all from earth return.
But there are lessons taught down there,
I want this child to learn.
I've looked the wide world over,
In search for teachers true.
And from the throngs that crowd life's lanes,
I have selected you.
Now will you give him all your love,
Nor think the labour vain.
Nor hate me when I come
To take him home again?
I fancied that I heard them say,
'Dear Lord, Thy will be done!'
For all the joys Thy child shall bring,
The risk of grief we'll run.
We'll shelter him with tenderness,
We'll love him while we may,
And for the happiness we've known,
Forever grateful stay.
But should the angels call for him,
Much sooner than we've planned.
We'll brave the bitter grief that comes,
And try to understand.

Cry and mourn for these children. Send a flood of grief for their families. Their journey is over. God grant the families peace and rest. The children are now healed. Amen

Lisa Hurley
1/31/2003


Savannah is a bit better. Maybe a 6.5 on her scale. I am going to call it bts (brain tumor scale) for short. This can in no way be related to a normal kid with normal ailments. It is getting harder and harder for me to respond to the simple question, How is Savannah? How is Savannah? Really...She seems to be in a constant state of flatness with an occasional breakthrough of smiles or laughter. One of the nursing students said she has such a small mouth. I said it was the puffy face and showed her a big mouth with a big smile pre tumor.
Her walking yesterday seemed the best its been since before Christmas. She sleeps and sleeps and sleeps now. That could be the steroid reduction (they keep you wired), or the chemo, or tumor progression, or swelling...the guessing kind of wears you out. Her back hurts her so much still. She still has severe constipation even though the milk of mag and myrilax give her loose stools and diarhea. I absolutley cannot understand why nothing was done about it while she was in the hospital on an IV.
OK, MRI results. I will try not to laugh. The dr says...there is a little bit of shrinkage...this is good...any questions? Mommy is very frustrated and if this happens again I will take responsibility for allowing it to happen. Next MRI results will be more complete, or it is my fault for allowing it. 2 doses of chemo. No vomiting, diarhea, hair loss, yet. Only increased sleep. That may just be a coincidence.
My happiest time is when she is quietly breathing, no apnea and no congestion. I am terrified of a rumble or gurgle in her lungs. I have learned what happens to these babies with this horrible monster growing in their heads. Even though I am terrified, I have a complete joy in the miracle of a clean steady breath.
There are those who suggest I get something to take the edge off. What, and miss the joy. I know the only way it comes is in extremes. The only way to get one is with the other. Right now I have to live with the progression and side effects to see the true beauty of life. I reserve the right to change my mind at any time. Gotta go hold my baby before she goes to daddy's for the weekend. These few times apart are so hard on me. I want the girls with me terribly, but I know my not imploding depends on the break.

Lisa Hurley
1/23/2003


Savannah was released from the hospital on Sat. I am so exhausted I don't even want to vent. Finally, on Tues we got all her prescriptions filled. You can fill in the blanks between Sat and Tues. She was a bit better and stable.
Tuesday she had clinic and her first chemo treatment. I did tell the one of the Drs what happened and how I felt about it.
Savannah got another x-ray and urine test before chemo began. The kidney stones seem to be shrinking and some may be gone. She still has some compaction, but not quite as severe. She also now has a urinary track infection.
Children endure so much and are an inspiration for bravery. She has had no side effects from the irinotecan. But you never know how she will react next week. Yesterday she had her MRI. I got a copy for myself.
This will make it much easier for second opinions if I chose. We won't know the results until 1-28. I am an engineer not a doctor, so I will not jump to conclusions.
She feels better from the reduction of the steroids, but we see new brain tumor symptoms creeping in. Some are the same as before and some are new.
We have to take a deep breath and hold on tight to our daughter. Mark and I are now on the same track. I see it in his eyes, how he looks at his little girl. With all my heart I pray that what I see is just the side effects of the steroid reduction.
Hopefully she will be one of the 30-40hat will respond to the chemo to keep the tumor from growing any larger. Last night she was on the pot. I was sitting with her and told her I wish with all my heart I could take it for her.
I asked if she would let me take it. NO!!! Their instinct to protect us is just as strong as ours as parents. It fills me with so much pride. She endures so much. If my research is accurate 1 in 350 children develop cancer. Of that 10re brain tumors. Her type constitutes 8.7
This means her chances are 1 out of 30450 children. Her illness will protect 30449 other children. I will post soon. I am so tired. This journey we have been forced to take gives no rest for the weary.

Lisa Hurley

Friday, November 19, 2004 6:53 AM CST

Olivia has joined Savannah and all my other children. Please stop by her web site and leave a message. This is so important. I know there are a lot of those who just look and don't post. Please just say I am sorry for your loss. That is all. It will help Wendy. If you truly care, help her by telling her. www.caringbridge.org/mi/oliviasgrace

Savannah had another web site prior to this. It actually took her through the beginning part of her disease. It still exists as a slide show, but the entries are gone. I found them in my computer. I thought I would post some, so you can see the beginning of the journey. It begins just over a week past diagnosis date. My writings in the beginning shared little of the intense emotion I write here, but that was much more of a public forum.

It starts at the bottom. It begins...

1/16/2003


Friends, Savannah was admitted to the hospital on Tuesday. Her back has been hurting her so very much. She couldn't even lift her hear off of her pillow ing the morning. So weak.
It was clinic day and daddy took her. I gave him a list of what he called demands from the dr. (x-rays for her back, listing of chemo side effects and what to do about them for next week, prescription for wheelchair, etc.) The dr followed everything on my list.
She has several large and small kidney stones embedded in her kidney tissue. The renal dr spoke to me twice yesterday. He said her urine has a tremendous amount of calcium in it. He suspects that the decadron is leaching calcium from her bones. I could have told him this. They will have to try to dissolve them because she will not be able to pass them.
Her onc said he thinks they are too big to be caused from the steroids. If this is the case she will be the first person on both sides of her family to ever have kidney stones and at age 5?????
Problem 2. She is packed. Even though she has movements twice a day on averages, she has a tremendous backlog. They are keeping her at the hospital to clean her out so they can start chemo next week.
The dr said we can afford no more delays. Delays!!! I wanted her off of 8mg/day and a bit better before we started. If we started when he wanted us to we all probably would have blamed the chemo for all this stuff.
I want to thank all my groups for teaching me to be firm when it comes to my childrens care and not have the guilt of crossing the doctors and nurses.
Also on a side note. Do not let any drugs be administered to your children without reading the label yourself and asking what it is for. The nurse was going to give Savannah prednisone. What? She takes dexamethasone and she already had her 4 mg today. No! Not unless the dr comes and explains to me why she needs it. And that was that.
God, give everyone on this group the strength to endure, the patience to comfort, and the release to cry away our anguish so we can continue to live.
Lisa m/o Savannah 3-9-97, dx 10-29-02 dbsg, tx 11-02/12-02 IMRT, decadron reduction 01-07-03, irinotecan to start 01-21-03. This is the latest posting to my support groups.

Lisa Hurley
12/26/2002


Christmas eve and Christmas day were absolutley wonderful for all of us. The girls opened up presents both days. There were presents from Alaska, Washington, Mo, Co, Fl, Jacksonville Ar, and loving friends and family.
Mark and I video taped it all. We will need those later. Savannah was thankful mommy didn't get Eminem, the man, under the tree. Just a couple CDs. Oh well, we can't always get what we want.
We ate very well..Christmas Day thanks to Mary and Tena. Savannah had some problems opening presents and she fell a few times. I still think this is due to muscle weakness from the steroids. But she knows her limitations and asks for help.
It makes me want to scream. A five year old should be independent and want to do everything herself, not ask for help. She will have plenty of projects to do when Ms. Christy starts to watch her in a couple of weeks.
I do believe, this was one of our best Christmas' ever. I think celebrating at home was the most important because Savannah gets real stressed when she thinks she has to go somewhere. All of us had an incredible two day birthday celebration.
Thanks to all the prayers, I witnessed miracles in my home with my children. Look at your own families and you can see the same. An enormous thanks for the gifts. If circumstances were different, I would have flipped at the amount of presents my girls had to open.
But it was great to see the joy and magic in their spirit and eyes. That is priceless. Thank all of you.

Lisa Hurley
12/16/2002


Savannah is improving a little daily. She is still no where near where she was in Oct. though. Radiation is completed this Thurs. Mom will return home to work on Sat.
She has been an angel to us all. She and Savannah have almost filled the deep freezer with the food they cooked.
Donna came for a week to give mom a break. That was wonderful for the girls. Savannah and Donna did projects all day long.
Since just two weeks ago Savannah can color, write letters and numbers(not real good but still progress), talk better without slurring, use the bathroom, make some of her food, use a scissors, and rearrange everything.
She cannot walk up a step, and she cannot sit on the floor or get up without falling down.
The improvement I think now comes from the decrese of Decadron. I talked the doctors into reducing it last week. The improvement since then has been great.
Two days after the reduction her head stopped hurting. That was a first in a month. Make-A-Wish grantors came to visit Savannah last week. She made her wish and now we just wait to see if it can be granted.
She wants to have them back and make a feast for them. We will have to do that. Her MRI is scheduled for 1-3-03. We will see the results of the radiation. The most important is how we think she is doing though.
Chemo will begin sometime soon. She will be on an experimental drug called Irenotecan. It is in phase 111 study right now. Hopefully, tomorrow at clinic we will find out the game plan for her.

Lisa Hurley
12/05/2002


Update Alert Savannah has been improving daily. Donna came down to Arkansas to help us out for the week. Savannah is in heaven with 'Aunt Donna'.
She hasn't been watching any tv(remember this was all she could do for 4 weeks). They do projects all day long. She laughs at all of us.
The left side of her face is puffier than the right. Her doctor said that is from the paralysis she suffered.
Hopefully, the more she uses it the tighter her muscles will become. Laugh Baby!!! She has 9 more radiation treatments to go. Really, she has suffered very little with the radiation.
Chemo is next. The doctor plans on using Irinotecan. Once a week for four weeks then a two week break. This will continue for up to two years.
This drug is still in the experimental stage, Phase III trials. To read about it check out www.virtualtrials.com/cpt11.cfm. Donna goes home on Saturday and mom comes back on Monday. I don't think I could have survived the last 6 weeks if it wasn't for the strength of my family and friends. I love you all so much. Everyone fills a different need. I think Savannah may be getting somewhere with making a wish. All she would tell me for the last two weeks was, "The only wish I ever had for my entire life was to have my mommy forever." What a child!!! In the last month I have shed just as many tears of joy as I have shed tears of pain. She checked out another web site's make-a-wish trip. She said she wanted to go exactly to the same places this other little girl went. I think this means she is feeling better.

Lisa Hurley
11/26/2002


Time for another update. The last 72 hours have been very good to my little girl.
She talks nonstop again, but more importantly she talks closer to the way she used to. Her vocabulary is better then mine (Mark you do not need to comment on that).
It is still slurred because the right side of her face is limp, though. I am hoping for an improvement there. She can't take a nap again and is tired but always up and moving around.
I was hoping the doctors could drop back her steroid dosage. Her blood pressure has been very high. This is also a side effect of the steroids.
And as of today the doctors cut it back 17%. Savannah is not as reluctant to go to someone other than mommy. That makes it a bit easier on me emotionally.
Uncle Thom visited over the weekend with three of her cousins. I believe they all had a blast.
Savannah is learning how to cook with grandma, and she can't seem to wait for the next meal to tackle. The grocery store now seems to be her favorite place. She has made pigs in the blanket, potato casserole, blueberry muffins, hot chocolate, enchilladas, and two kinds of eggs with cheese. I am sure I am missing a score of other foods as well.
Every day when I return from work she takes my hand and leads me to the kitchen where she shows me what she has made with grandma for dinner. If she has a few more days of improvement, she may be ready for an hour or two of a guest.
Her hair has started to fall out at the nape of her neck. I am trying to collect it and put it in a bag. I have been expecting this. Keep the thoughts and prayers coming. I draw strength from them.
Thanks to all of you.

Lisa Hurley
11/17/2002

TIME FOR AN UPDATE...

Savannah has had 8 radiation treatments. They hurt her. They make her ankles burn and her tummy hurt. The right side of her face is droopy and she is getting a moon face.
My baby is laying down most of the time, but she does get up to eat A LOT. The high doses of steroids give her a ferocious appetite.
On the good side, she is articulate again in her speech. It is just hard to talk with one side of her face limp. She is affectionate and touchy to me again.
I had missed that more than anything. Savannah always had her hands on me, stroking my arms, cradling my face, kissing me. She has accepted grandma.
It was sad before because she refused EVERYONE except mommy and daddy. This is more like her. The doctors say this is where she should be. We should start to see improvement.
Apparently, the tumor initially swells with the radiation as it begins to die. Hopefully this stage is completing now and she can return a little closer to her normal self for a while.
Everybody, thanks for the prayers. Especially thank you for your tears. That means my little girl has touched your life. This mommy wants a flood of tears. Make her important by grieving. It is good for all of us.

Lisa Hurley
11/06/2002

Welcome family and friends to Savannah's website. There are many reasons why this special place has been created. It is a place for us all to share information to better understand what has happened. It is a place where we can share pictures, and cherished moments with each other. It is a place where we can leave notes about how we feel. Ultimately it is a place for you Savannah, so that you can see our love.

Monday, November 15, 2004 11:26 AM CST

You know why I like Evanescence so well…I will tell you. The music doesn’t end happy, but it is beautiful. The song ends how a day will end. The pain has not ceased. Pain and loss are a daily struggle. It is immense and overwhelming at times. It is long term. The most we can hope for is to continue to the next day. It also is not necessarily standard lyrical format. Neither is grief and emptiness. Whether it is a relationship ending or death, routine ceases. You flow with whatever emotion comes your way and you may deal with it in a ‘not routine’ way.

I am going to try this again for the umpteenth time…maybe I need to do many short ones, I may not lose them. I have tried posting for 1 ½ weeks and keep losing them.

I have made a huge discovery! My emails don’t actually send. They say they do, but they must just fall out of my computer at home. I think this has been going on for over a year. How could I not ever figure this out? I laugh at all the time I have wasted writing. I am angry because of all the people who may have been hurt by my unknown silence. I hurt at all the people who needed a cyber hug but never received mine. All the thank yous, all the personal letters instead of guest book entries, all the condolences, etc. To Jennifer, Tami, M Elton, Lori, Kara, Lauren, Celeste, Riannon, Diane, Rob, Sharon and countless others. I am so sorry. Many must have thought I was so cold or didn’t care. I NEVER expect a response. And I never got one. I didn’t ask for anyone to email me back. No one ever did. I am so glad I still am a fan of snail mail. But many we just emailed. Ohhhhhhhhh!!!!!! All those bereaved parents, spouses, and parents…all those that experienced other tragedies in their lives…all those that needed to know I appreciated them. I feel so bad. This may be why I receive emails from my yahoo group, but can’t post. Over a year. Agggghhhh!

Cassie is in Quiz Bowl. She is 1st alternate and absolutely crushed. She says it is failing, like flunking. I am so proud she made 1st alternate. The 4th, 5th, and 6th graders compete on an equal field. So she actually is at a disadvantage due to age, years of school, and years in quiz bowl. All the 4th graders got dropped, but she is the alternate. I beam with pride. With all she has been through, to excel. She is also devastated for the other little 4th grader (she didn’t care to much for the 4th grade boy). All that heartache and disappointment for herself and she is so concerned for Erica. I think that is admirable.

We have had a couple more angels due to dpgs. Please pray for their families. The girls are healed, but their families will forever be empty.

Thursday night, my office suffered a great tragedy. One of our coworkers lost her life in a motorcycle accident. Friday was very hard on us all. I couldn’t even check Savannah’s site ‘til this morning. I wanted to deck out in full leather and go for a ride Friday night, but I had Cassie. Jerry said he wouldn’t have taken my Friday anyway. He even took his truck to work on Saturday. She and her husband were very cautious motorcyclists and rode with a group weekly. Immediately, I start hearing how dangerous bikes are. Seems to me it was the other drivers and vehicles who are dangerous. This morning we all arrive at work to find her cubicle cleaned out. I think everyone here is personally offended. We need time to grieve, time to remember. And it’s all gone, like she never existed. Yes, I have a big problem with this, but it is company policy. My father has told me it is government policy, also, so I wasn’t surprised. But many others were. It seems to add to the loss and emptiness. Could we not wait until the funeral? What is the reasoning? I bet you in years to come, it will change. Remember hospice was a radical organization when it began? Please pray for her husband, her family, and pray for the couple that hit them. Everyone has lost. And some have lost everything. We love you, Martha.

I was having computer problems again. Everything got wiped out. I lost my addresses. I apologize in advance. It will take a while to reconnect through other caringbridge sites. In no way does this mean anyone is forgotten. It is amazing the crap that attaches to your hard drive. The hidden files that you need other software to clean. My sound is still gone after the last time Jerry had to reinstall windows.

We make it to the next day.

Tuesday, November 2, 2004 7:12 AM CST

Wed Nov 3rd
God has called for another angel today. Troy beat the monster this morning. Please visit his website at www.caringbridge.org/ny/troy . Leave a message. Shed a tear. Another warrior God has sent for. I pray Savannah has met him and is chasing him around. I pray he is begging Ashley to hide him. I hope Celeste yanks him behind a cloud. I can see Cheyenne telling the soaring children, it is time for hot chocolate and shrimp. And Sydney laughing at the combination.
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5pm update
voting was fulfilling. i did my duty. cassie is with daddy. tonight is to relax. jerry and i will go to clarksville tonight for a couple beers to unwind.

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Message................Some powerful thoughts by a Marine Master Sergeant to reflect and ponder over. This Marine really has a handle on our "AMERICA," and the situation it now finds itself in. Enjoy and give it some serious thought.

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I sat in a movie theater watching "Schindler's List," asked myself, "Why didn't the Jews fight back?" Now I know why. I sat in a movie theater, watching "Pearl Harbor" and asked myself, "Why weren't we prepared?" Now I know why. Civilized people cannot fathom, much less predict, the actions of evil people.


On September 11, dozens of capable airplane passengers allowed themselves to be overpowered by a handful of poorly armed terrorists because they did not comprehend the depth of hatred that motivated their captors.


On September 11, thousands of innocent people were murdered because too many Americans naively reject the reality that some nations are dedicated to the dominance of others. Many political pundits, pacifists and media personnel want us to forget the carnage. They say we must focus on the bravery of the rescuers and ignore the cowardice of the killers. They implore us to understand the motivation of the perpetrators. Major television stations have announced they will assist the healing process by not replaying devastating footage of the planes crashing into the Twin Towers.



· I will not be manipulated.
· I will not pretend to understand.
· I will not forget.
· I will not forget the liberal media who abused freedom of the press to kick our country when it was vulnerable and hurting.

· I will not forget that CBS anchor Dan Rather preceded President Bush's address to the nation with the snide remark, "No matter how you feel about him, he is still our president."

· I will not forget that ABC TV anchor Peter Jennings questioned President Bush's motives for not returning immediately to Washington, DC and commented, "We're all pretty skeptical and cynical about Washington."

· And I will not forget that ABC's Mark Halperin warned if reporters weren't informed of every little detail of this war, they aren't "likely -- nor should they be expected -- to show deference."

· I will not isolate myself from my fellow Americans by pretending an attack on the USS Cole in Yemen was not an attack on the United States of America.

· I will not forget the Clinton administration equipped Islamic terrorists and their supporters with the world's most sophisticated telecommunications equipment and encryption technology, thereby compromising America's ability to trace terrorist radio, cell phone, land lines, faxes and modem communications.

· I will not be appeased with pointless, quick retaliatory strikes like those perfected by the previous administration.

· I will not be comforted by "feel-good, do nothing" regulations like the silly, "Have your bags been under your control?" question at the airport.

· I will not be influenced by so called, "antiwar demonstrators" who exploit the right of expression to chant anti-American obscenities.

· I will not forget the moral victory handed the North Vietnamese by American war protesters who reviled and spat upon the returning soldiers, airmen, sailors and marines.

· I will not be softened by the wishful thinking of pacifists who chose reassurance over reality.

I will embrace the wise words of Prime Minister Tony Blair who told the Labor Party conference, "They have no moral inhibition on the slaughter of the innocent. If they could have murdered not 7,000 but 70,000, does anyone doubt they would have done so and rejoiced in it?

There is no compromise possible with such people, no meeting of minds, no point of understanding with such terror. Just a choice: defeat it or be defeated by it. And defeat it we must!"

I will force myself to:

· hear the weeping
· feel the helplessness
· imagine the terror
· sense the panic
· smell the burning flesh
· experience the loss
· remember the hatred.

I sat in a movie theater, watching "Private Ryan" and asked myself, "Where did they find the courage?" Now I know. We have no choice. Living without liberty is not living.

-- Ed Evans, MGySgt., USMC (Ret.)
Not as lean, Not as mean, But still a Marine.
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now the reasons behind this, being election day...

yes this is political...but i understood something about me and others parents. the parallels are uncanny.

we parents of cancer kids...we parents of dead cancer kids enter a war we didn't ask for, we never saw it coming, we were passive with life, we focused on the good not the evil (called cancer), we could NOT fathom the terror.

I saw some in the beginning of the fight give everything over to God to solve. If you love God enough, he will make it go away. Passifism. Let the doctors handle it. Stay ignorant by choice because it hurts.

see the parallels yet?

then the strong ones, the parents devoted to their children, take the hand of God and wage war. We open our eyes, we learn, we advocate, our hearts bleed, we love so deeply, we start the fight. Our eyes remain open to the weeping, the helplessness, the terror, the panic, the loss, the destroyed flesh that is these kids, the cancer (the uncontrolled cells that take over and destroy its body). Without these feelings, we are passive. What a disgusting life to live. Allowing your children to die without a fight. Just as allowing our citizens to die at the hands of the terrorists. Us parents know the value of life. What happened to America? We must protect ourselves as we protected our children.

God sent me gifts beyond measure to fight for quality of life for my dying child. I felt the angels around me. War hurts. It sucks. My child died. I am pissed. I love God. I still live to feel the hurt of others. To fight with them. We are warriors now. Advocates for our babies. God Bless the strongest of all fighters, parent and child.

Many think we should sit back and talk. Well, guess what, if I chose to be passive, my daughter would have been dead in less than two months! No Sh*&!!!!! We must fight for a cure. It doesn't matter if it is for a brain tumor or terrorist. They are both cancerous. I will fight for those feel good people, because one day through my fight a cure might be found and those blinded folks may live.

Now go vote. And to my dearest Savannah...
You have made mommy a fighter, a warrior, an advocate, a shoulder to weep on, arms to embrace, a person who mourns because I chose too, because the human race is worth it.

In those other countries that we are to leave alone...would our children ever have been given treatment? Who they have been set aside to die? What research is being done to save? ponder that?

I thank God Savannah was born into the greatest country on earth. The most compassionate, the one with the best human rights, the leader of medicine and of hope, the safest. It allowed her LIFE.

God Bless America!

Thursday, October 28, 2004 4:06 PM CDT

NOVEMBER 2ND
ALL SOULS DAY.
A holiday us Catholics celebrate. It is the celebration and rememberance of those souls who have gone before us. A day to honor our dead.
Sweet Savannah,
I miss you with every breath. I know you are healed and happy. You have friends beyond number. My love.
Mommy


NOVEMBER 1ST
Conner earned his angel wings this morning. Please visit his site at http://www3.caringbridge.org/tn/connorhunley and leave a message of support. He is painfree.

OCTOBER 31ST
Cheyenne earned her wings yesterday. Please pray for her family. Cheyenne is tumor free now, probably chasing Celeste and Savannah around. Please post a message, even if it is just an I am sorry, for nobody knows the right words to say. www.caringbridge.org/tx/cheyenne5

OCTOBER 30,2004
my youngest child died six months ago today. Do you remember me? Will you be on the other side? Sometimes I am just an empty shell. Sometimes I overflow with a new light. We celebrate Halloween tonight. It was always one of my and one of Savannah's favorite holidays. I am absolutely pissed that Russellville is celebrating tonight. Halloween is to ward off evil spirits for a good harvest. There is nothing evil about it. Maybe part of me is just pissed. I do have a right.

On a good note...Cassie and I have had a busy day. I ironed and cooked this morning. We got omlets from the American Legion. Made bead art for MACS kids. Did laundry, went grocery shopping. We went to Fall Fest and she played games. And I have a chicken in the oven. Sigh! And my youngest child is gone. Cassie and I held hands all day. No one to hold my other hand. Cassie doesn't realize it is 6 months. I don't think I will tell her.

Those vibrant blue eyes. That long flowing orangish red hair. That porcelean skin. That fiesty personality. That tender touch. That one orange tooth. That incredible smile. That loving soul. Oooohhhhhh.

#######################################

Song interpretation is very personal. For every listener there is a very real different story. So I never really shared one until today. My Last Breath is again above. Everytime I hear it, I hear it through Savannah's mouth.

Savannah was always touching me, as I her. I couldn't keep my arms from constantly embracing my girls. I have had several people tell me that I am the touchiest mommy they ever saw. And Savannah loved it. She was the most 'I Love You'ist person that ever was. She told me at least a half dozen times a day. I often wondered if she was somehow fearing a loss or I lacked in something. But I don't think it was the case. She loved me. Her world was her mommy. She lived and breathed for her mommy. Just about everything in her life came back to mommy.

As her brain tumor progressed, she became more distant. Inside herself so to speak. The brain starting to shut down? It is a good way, I imagine. Where did she go? Was she playing? Hiding? Did she feel safe? All these I thought, when I would watch her and hold her. I hoped it. I prayed for it.

Her biggest goal was protecting her mommy. She pulled my emotions out. She wiped away my tears. She held me in her arms. She told me she would always be there for me. She would tell me she would always protect me. Reread this part! What 4/5 year old speaks like this? I was not a basketcase. I just had to cope with a divorce, asthma, then a brain tumor. I functioned quite well. She saw what no one else could. HOW? Now read the lyrics to My Last Breath. See it through the eyes of a beautiful redheaded spitfire. This is the most powerful song to me.

'Broken' keeps kicking me in the gut. It has since Jun or July (I lose track of time now). Seether w/Amy Lee (go figure). It is a beautiful duet. Incredible in concert, too. Again through Amy's voice I hear my angel child. I guess, I get the opening verse. EVERY SINGLE TIME she sings...The worst is over now and we can breathe again...I lose it. Can I breathe again? Because I am truly Broken. Any parent who watches their flesh die is Broken.
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I have been blinded by tears all day. Tomorrow is diagnosis day. 10-29-02. The day my youngest daughter died. The day I saw her pupils NOT repond to light. The day the dr said she had 2 months to 2 years and there was nothing we could do. The day I died. The first day I started to beg God to take me instead of my child. The first day I told God to take her fast if she would have no quality of life. The day I had to become an advocate. The day I chose to live in the pain of not only watching my daughter die, but to be there for any other parent who had to do the same. I day I chose to relive and relive and relive the worst grief and pain in existence. I chose it now.

Two years ago today, Mark and I took her back to her pediatrician. She could barely walk. Her fine motor skills were damn near gone. Still didn't think it was a brain tumor but MRI tomorrow, to rule it out. Cassie is with daddy tonight. Tonight I will get drunk. I am tired of crying and throwing up today. I told my boss if I am not in tomorrow morning, it is because I will be hung over. And I think this is okay! (I am notorious for having get drunk plans, and they seldom materialize)

Peace to all. Please please pray for the other kids and their families. I will be okay. I don't think Cassie remembers the date, and Jerry wasn't around. So it is just me, and now the world. I will be okay.

****************************************
10-30 update
I failed with my plans of overinduldging. Figures. But this is not really a bad thing. We took a short bike ride. Wore my new goggles. Visited friends. Then went to the club, ate dinner('tis a rarity for me indeed), visited with our friends there, and came home late. Poor Jerry had to be gone at 5:30 this morning and we are out of regular coffee. I slept in because I didn't have Cassie to take to the bus.

One the Bundle side...so far...so good. I need to tell about another freaky thing that happened yesterday. I have had a new tattoo picked out for about 5 months. I don't think I ever mentioned it except to just a couple people. I showed it to the tattoo artist here on Tuesday. It is of a weeping angel. Grief. Actually I ordered a statue for Tami and Celeste and one for me and Savannah. (mine was broke and got sent back). If you want to see it go to www.pyramidcollections.com. I think they call it Rememberence. Well, I am getting lyrics yesterday and run across the cover of an Evanescence EP. Whoa!!! I think it it the gravestone this statue is modeled after. Theirs is a front view. Jerry thought that was quite strange. Does it mean it is time to forever wear my grief for the world to see?

Monday, October 25, 2004 6:38 PM CDT

first to Celeste. Spirit was Savannah's favorite movie. in fact, it was the last one she saw. powerful,huh?

what a weekend!!! my FIRST bike rally. we had a great time.
#1 news...I won 1st place in the womens single color tattoo. The beautiful savannah angel. I got a really nice plaque. then on a fluke I entered the multicolored tattoo, savannah's unicorn. it won second place. maybe i can get a picture of it up here. the unicorn i can't, due to how it was displayed. oh, you only live once. What an honor for the artists and their shop. They asked who did them and where I got them. I got a great picture of Jerry and the Savannah Hurley Harley. We met up with some of his old riding buddies from eastern OK.

Cassie came home today and we have been hanging out. My back hurts between my shoulder blades real bad. Could be sleeping on th ground has caught up with me or way too may cigs last night. Lisa C. came over and we induldged. I never got around to doing it at the rally, so I guess we had some catching up to do. Time to cuddle with my 9 yr old.

Wednesday, October 20, 2004 7:00 PM CDT

My life is starting to stabilize and everyone elses is falling apart around me. That doesn't even include all the bereaved parents, the children fighting cancer, and the sibling struggling through life on the back burner. Please send prayers for Celeste's family, Cheyenne, Nicole, RayAnne, Ashley's family, Pam's family, Jarod's family, Kathy, Melody, Julia's family, Maddie's family, Michelle's family, Sydney's family, Katherine's family, and so many more. You learn to live in grief. I can laugh and cry in the next moment. Savannah taught me to embrace every moment. Yet my heart is so heavy.

I miss my baby with every breath. She was so cheated. All these kids were cheated. All sick kids are cheated. All abused kids are cheated. All kids living in a war zone are cheated. All kids living in fear from government, environment, illness, and poverty are cheated. It makes me angry. It would make Savannah angry. I sit here and look around my bedroom. Lladro's of mothers with children. Framed pictures of mermaids and fairies with children, mine and Savannah's hand embraced from a cast. I am still a mommy. I always will be, but I have been ripped off. I never really wanted to be a mommy until I was one. Then my life turned course and I did a 180. NOTHING comes between a child and mommy. I sure was wrong, wasn't I. My job to protect and I did, if you know how I lived pre diagnosis. Then, BAMM! Cancer wins.

Sigh! We went to the club last night to shoot pool. That was always MY escape place. My dance place. I never took my kids there. Now I take Cassie (they don't have the nightclub thing going on when she is there). It is a getaway place that Savannah had never been to. So it becomes a neutral place. A place we can all go.

Cassie made a smoothie for snack tonight. Strawberries, kiwi, pineapple, and papaya (little Celeste). Always a reminder. A welcome bitter sweet thought of a precious little girl whoose mommy allowed me to be a part of their lives.

Monday, October 18, 2004 12:37 AM CDT

I LOVE being wrong sometimes.

We had a wonderful weekend. Mom seemed like her old self. The decision to retire has worked a miracle on her. She showed me pictures of their trip to Alaska. She looked so hard. I know this look. It is the same look I had when we went to FL. It is the same look I had all summer. I figured out what that look is. See pictures of released POWs or prison camp victims. That is it. Oh God, do all us parents and caretakers look like that? It is a look of acute trauma. What a dark place. Sigh.

I let Cassie play with her cousin for an extra hour before we left st. louis yesterday. Then I decided to head to Memphis instead of Springfield due to weather. The way we took to a WHOLE lot longer. BUT Cass worked on her mathathon for st. judes. Over 4 hours straight this round, and she got it all finished. Yippeee!!! She was excellent in the car going up and back. We went shopping for Cassie of Saturday. We made mom go to. Mom wanted to stay home and cook, but Cassie wanted to help, so it was postponed. Cassie got clothes for the winter. No coat though. She didn’t like any.

The reception was a lot of fun. They had incredible food and entertainment. Belly dancers! They danced with swords and fire. I was impressed. It was cool. There were many people I knew, so I just mingled. Oh, Jerry was sick sick, fever, and crud, so he chose not to go. He stayed in Arkansas. It made for a longer trip, but at the same time, it was nice, just Cassie and me.

I am so glad to have my mom back. Cassie said she had a lot of fun with her. Cassie was working on a new quilt design, and they were sewing pieces together. I never saw her watch tv while I was there. My niece is a doll. She was so very sad when we left. Her heart was being broke. I got to see my brother for a couple hours. Was good. And we celebrated dad’s birthday. Cassie had made brownies for him.

Don’t forget Melody, RayAnne, Cheyenne, and Nicole. Pray for all the mommies, daddies, brothers, and sisters who have been left behind.

and a new picture.

Monday, October 11, 2004 11:41 AM CDT

I won't alter the guestbook. It is all true, but understand much is not spoken here. All that has been said has been well weighed and was weighed as I typed. IF I truely had been irresponsible, I could have easily written her off. It is BECAUSE my mother is the most amazing woman I have EVER known in my life...it is BECAUSE this woman saw death as a child in war...lost her mother at an age younger my my children...immigrated to this country as child, knowning not a word of English...because of the ABUSE she suffered as a child...EVERYTHING she gave up for her CHILDREN (where do you think I learned?), because she was the SOLE caretaker of her father and stepmother, because she sacrificed herself for her daughter and granddaughter. I tried to keep that in tact. More than was anyones business. She suffers two losses. I suffer one, again and again and again. I choose. I choose to reach out. No one else can truely understand, except those who walk the same path. to be cont. okay...quickly, I am tired and am going tobed. post...but do not trash my sister for defending my mom and do not trash my mom. they have bith given given given, Never have I meant to understate this, NEVER. Grief is vicious. And we all deal differently. I wikll explain more later.

Why is it you can talk to certain people and they just bring you down, cause you to requestion yourself? I think it is a good thing to reassess, on occasion, where you are and where you are going. And it is usually the closest ones to you. I suppose it is because we have allowed them access into our hearts.

My mother is a wonderful person. She has given up so much for my child and myself. I can’t seem to have a conversation with her anymore, without her hurting me. She doesn’t mean it, and doesn’t want to hurt me. But it happens. There is a big space now. I need a break. But I have pulled back from my friends as well. I have been VERY busy with Cassie and I have been cleaning. My attic is larger than two good sized living rooms, and it was FULL. I have attacked it with vigor WHEN time allows. This has been going on for a couple months.

Mom has not dealt well with Savannah’s passing. Actually, once she again became symptomatic she began not to deal well. She has attacked me as a parent. Been vicious to Jerry. Cassie no longer wants to be around her. My cousin Susan feels she is being questioned just in her presence. She came to stay with us and help, but the price was high. When the time came, God interceded in so many ways. It ended up being Savannah, mommy, Jerry, and Father Charlie. Her death couldn’t have been more perfect with those present (that statement is sickening in itself). Mom had flat out told me, time and time again, she WILL be there at the end. Mom came down to care for Savannah, but was now offended when my household worked as a team. Jerry had been moved in to help particularly at night. He had many rain days at this time. My cousin came down to help. And my mom got pissed.

1) Didn’t trust Jerry. I can follow this. What were his motives? Money? Must be…everybody is driven by money. Savannah chose him. I moved him in when I could no longer move Savannah safely around by myself. She would cook, but NOT for him. He should be working (rain day-hello). Didn’t matter. She was down right MEAN. I was ashamed that I was a child of this woman. I had never seen her like this before. I knew she wasn’t coping, but my first responsibility was to my children.
2) Cassie is ADHD. It took me years before I finally medicated her. I believed it was poor parenting skills that caused her to be the way she was. I kept changing the way I did things, the discipline, the rewards, her schoolwork, and our time together, etc. She only got worse. Finally, I took her to her pediatrician and had her tested for ADD. We had questionnaires to fill out. So did her teacher. Interviews. Then the news…Yes, Cassie had ADD…but unfortunately it is worse…she is ADHD…which is much more difficult to treat. Mom ABSOLUTELY doesn’t believe Cassie has this, and I hear about it all the time in roundabout ways. Before I just kept getting my feelings hurt. Again requestioning my parenting…what I had been doing for 6 yrs (yes, 6 yrs…I knew Cassie had this at the age of 2). Then after Savannah got sick, I learned to trust myself. Then I realized what was happening.
3) Mom is soooooo hard on Cassie. NOTHING she does is right (from Cassie’s mouth). Sometimes, mom is right…BUT she makes a big deal out of it. i.e. Cassie is holding the fork wrong (I am lucky she is not eating with her fingers…been fighting that for a few yrs…utensils take to long to shovel food in her mouth). Five minutes later…something else…five minutes later something else. Then I hear about how unruly and how undisciplined my daughter is. Then I get the, what I am doing wrong, obviously it must be me because ADHD doesn’t exist. Well, some might have it. But it is over diagnosed. It is NOT that I keep her over stimulated. She should read. (Damn it! She can’t focus to finish one line). So I became a bad parent and chose not to parent and medicated my child. Her school conduct is an A. No notes home from the principal. Her scholastic grades are As. She has friends again and kids like her. Her sister died and she is functioning better than the rest of us.
4) Then there are the attacks on me. I have big shoulders. All good motherly jabs from the way I dress when I go dance, to my choice in music, to my alcohol consumption, times of the day when I eat, who I talk too, choice of boyfriends, my parenting.
5) I seldom denied Savannah anything after she was handed down her death sentence. I lived for my children. Cassie was going to watch her sister die. We did as much as we could, when we could. I no longer had a normal household and I CHOSE not to live normally. We went with the flow. A burden was lifted and we flourished. I accepted what I saw were gifts from God. We pray and prayers are answered but not the way you expect them to be. Once you see this and accept it, you can see and feel the beauty of our loving God. These are God’s gifts, not man’s gifts, so why should we assume they match man’s society and rules? How many times do we turn our back because we aren’t sure what people would think?
My daughter’s life was a gift. I wanted her to outlive me, but that was not fate. BUT I was given quality time. 18 months to LIVE! 18 months to mourn. What a gift! Not what I asked for, but I still recognized it. I embraced that gift and hopefully never wasted a moment.
This is also a problem. I should do what I want and the kids should just accept it. Cassie wants to go to Hawaii, so I will take her. I hear about that. What difference does that make? It is just finding something to attack me on.
Sometimes I even feel guilty on my grief. Because mom is not doing well, I wonder if I didn’t love Savannah enough. Why am I able to function? Why am I not on medication, other than a couple beers every other night or so? Am I missing something?

Why do I need counseling? Why does Cassie? I am afraid it will create monsters.

I have to make the choice NOT to let this bother me. It takes me to a bad place. I mourn, I cry for Savannah, but this shit depresses and angers me and causes me personal doubts. Doesn’t matter what anyone says, it is just how I feel.

Jerry and I go to St. Louis this weekend. I had told mom I was bringing Cassie. She told me, she had the schedule and she works. Couldn’t take any time off. Then I changed weekends with Mark. It just worked out…hunting season. I figured I would still visit her. Time goes on … then I hear…but I WANT Cassie for the weekend…But you work…No, Fri is my day off and I will take off Sat. Of course…I remember…I went through this in June, too. And my memories about Cassie being taken are still fresh in my mind. Here we go again. But mom has just gotten out of the hospital and is slowly recuperating. She will also have Katie, my niece. I figure this is how it will go down…I have my plans made. About the time we leave, I will get a call telling me about a planned meal (remember how mean she was not including Jerry at my house). Jerry takes it in stride and backs my mom and dad. Telling me I need to understand they are grieving and scared for me. Jerry will probably be invited, but will he be greeted warmly? It’s my dad’s birthday weekend and my brother will be in from Detroit. Dad will be welcoming. I am so proud of him. Then after the fact, I will hear that having Cassie was too hard on her. Cassie will tell me things. I will again be sent spiraling. Wanting to please my parents. Wonderful people who raised me and did a damn good job, but I do it differently. I want it so bad to be different. I want to look back at this dark post in a couple weeks and say…Lisa…you were soooo stupid!!! Please?

I couldn’t sleep last night. Haven’t been having a problem. I love my parents dearly. Talking doesn’t help. I have done this a couple times. I am disrespected in my own home. Enough Lisa. I HATE it when I am like this. I don’t want to spit venom and that is what it sounds like I am doing. I sound like a whiny ungrateful little girl who didn’t get what she wants. Actually, on a funny note…if I did have a temper tantrum, I would probably feel much better.

Wednesday, October 6, 2004 7:15 AM CDT

Cassie and Jerry went fishing Mon evening. Cassie had to wear closed toed shoes. So…get this…she comes out in shorts and boots. Jerry just looks at her. Well Jerry, I guess you’ve never taken a girl fishing in gogo boots. Well, no but I bet she has never gone fishing with a man with braids in his hair, either. What an adorable sight they made.

I was printing out MACS stuff yesterday morning for the Builders Club. It hit me again. Another brain tumor. Then the Angels. So many diffused pontine gliomas. I cried silently for 15 minutes. Not a soul walked by my cube. Another small miracle because it was so bad there was no hiding it, and I just wanted to be alone.

I just didn’t want my post of my package from Evanescence in the history yet. But our lives continue. I will have the posted professionally framed and have them matte the card from Amy Lee in it. These are my plans. Christmas, maybe? Financially, we are just starting to recuperate. For the first time in two years, I actually had as much money come in as go out according to my checkbook.

I am listening to the CD Celeste made for me right now. I think of you/her every time I play it. Again, thank you. And to M Elton, the same. I still listen to the cds you/she sent me. When I think of the people that have reached out to me, I get the sensation of large angel wings wrapping around my shoulders. Gently embracing me, helping me stand up straight when all I want to do is collapse, warming my body and soul, giving me peace. Cassie and I are a little slow with the snail mail thank yous. We have been working diligently on her Quiz Bowl.

Oh yeah, she tested into the Quiz Bowl. I am soooo proud. She is a bit ticked. ‘Do you know I have to skip recess sometimes to STUDY?’ Oh my God!!! We’ve been working on capitals. I have made a matching game out of it. She does not learn as well as I by repetition, so I have to find something that works. I have to be quite creative with both my kids, neither could focus well, Cassie because of her ADHD and Savannah because of her tumor.

Jerry went up to Fayetteville for the Bikers, Blues, and BBQ rally on Saturday. He hung out with some folks he met at the Jim Beam tent. They asked him to ride in the parade with him. Front row of ALL the bikes (after the vendors, of course). He took off his bandana and let his braids free. I braided eight little braids in the front (keeps his hair out of his face) for him. He must have been a sight. He said he had a wonderful time. I am very glad he went. He needs some good ole bike time. Sparks is in less than three weeks. I am excited.

There is a new web site for a little boy named Aaron. Please check it out at www.caringbridge.org/sc/aaronsjourney . Post a hello. Don’t forget the others out there. Pauline has her wings now. Rayanne…Melody…Cheyenne (checkout her billboard). Keep the faith! Time is precious. Don’t stop hugging and kissing your kids. They mean everything. Keep your eyes open…our lives are filled with blessings and miracles every day, even when we are in the pit of despair.

Last night Cassie was at her daddy’s, so I asked Jerry to take me for a ride. We took the bike all the way to Clarksville. This new seat is much better. We drove Hwy 64 there and took I40 home. It was great. Even though it was 70 outside, I definitely needed full leathers on. Jerry wore my pants (I’m getting too big for my britches) and I wore his chaps. I’ll have to clean the visors tonight.

I had my first Kiwanis board meeting yesterday as pres. It was fine. I am a little iffy on what needs a motion and what doesn’t. I’ll get the hang of it. Today is my first meeting as pres. Whoa! Whoda thought? I have so much I want to do! Later on is the Builders Club meeting. I am taking the MACS stuff in case they want to make cards today.

Tomorrow I have the dreaded annual. But more importantly, it is Pam’s angel date. Remember Pam? That was one of the first sites I had linked here. www.caringbridge.org/ny/pamostrowski . Please please visit and sign the guestbook. Her sister Karen was one of the first to help me in this journey. What a sister!

Monday, October 4, 2004 11:58 AM CDT

Coming home at lunch to wrap a present...one of those BAM moments.

I remember getting a call from mom, it was March 22 7:45am. Lisa, I think maybe you need to come home. Okay. Jerry had just let his aunt borrow his cell phone. I had to find his job site and quick. Found it, but they moved. Phone rings again. Lisa, moms voice shakey, are you on your way? Savannah is unresponsive. Come quick. The hell with Jerry, I have to get to Bundle. Every second getting home was an eternity. The end was approaching. I had planned, hoping it would NEVER come to pass. I prepared knowing there was no way you can ever really prepare, praying that Savannah would be the first to beat the monster.

She was laying on the sofa. I think maybe she could see me but I don't know. But she was completely unresponsive. The damn tumor on her brainstem! I called Childrens Hospital in LR. Take her to the er. I don't want to. I don't want her to die in a hospital. The nurse and I argued. She finally said if she really is dying (you could tell in her voice I was a total f'd up idiot), I would be allowed to bring her home. she kept telling me, I (lisa) don't know. Except, I learned, parents DO know. Off we went. Oh, Cheri got a hold of Jerry and he was home. The er dr (idiot) checks her out and says she is blind (aaaggghhhh, she is not blind...her tumor is keeping her brain from closing her eye and focusing). It was like she was having a stroke (maybe she was) or it was seizures. The option...hospitalization with high doses of steroids. NO! What do you want mom...hospice. Do you have any idea how hard that is to verbalize? I am asking for my daughter to die. It is time. I can't stop the tears. She was tired, I was tired. I had to let her go. That is wrong.

I bet the nurse at children's was unhappy I was right. I never dealt with them again.

I had gone to work that morning. That was grandma's first day with savannah and it lasted 30 minutes. They were both cheated. Hell we were all cheated. The world was cheated. At least no more chemo, no more needles, no more MRIs, no more long drives to ACH. March 22, 2004, welcome to hospice.

Gotta get myself together. I will write happy tonight.

Tuesday, September 28, 2004 8:31 PM CDT

Be sure to check out the new pictures of Savannah and Tanner. What a knockout that little man will be. I am jealous. Savannah's soft little lips on his cheek. I remember how those felt. Butterfly kisses they truly were. They made my day. And I got them multiple times daily. She would cover my face with them. I guess she needed to be sure that mommy have a lifetime of them. What an adorable little couple they make! It brings a tear to my eye.

The three of us just got home from the Russellville Kiwanis Installation Banquet. It is done. This household will be very busy the next year with me as President. Jerry and Cassie were my guests. The two that make me whole. I am so proud of both of them. What a thankless job they will have being a part but not being a part. First Jerry brought in all the awards and helped me unwrap them all. Then he went to help Cassie. They made sure everyone got a ticket for door prizes. When awards were handed out, I read, our outgoing pres presented, and my all grown up 9 year old was the club photographer. She provided quite the entertainment. She took it soooo seriously. And when it was over, Jerry dutifully reboxed awards and took everything out to the car. Again, what a thankless job he will have following my around. We had our MO/ARK District Governor and Division Lt. Governor in attendence. I need to go give my prince thank you kisses...be right back.

Okay, I love this next part...
...I got a box from Ann and Joel in CO. We went to the University on Missouri-Rolla together. It had a package and a card. I read the card. Beautiful...until the..."he arranged for this package from Evanescence". I froze. 'Cassie, oh my God, oh my God, Cassie Cassie Cassie...it's from Ann and Joel...I mean it's from Evanescence...I mean they did this...their friends did this...Evanescence did this. AAAAGGGGGHHHH!!!!!!!!' It was taped up sooooo tight. I wanted to rip it apart. That's funny because I always savor opening gifts. I take everything in. But not this. Oh Savannah, you would have loved this. I was laughing with my eyes filling with tears. Cassie received two dolphin statues and an Athens olympic pin with dolphins on it. Thank you so much for including her.

I pulled out a framed single, My Immortal. It had a concert bill from England. Signed by Amy Lee. Then out came an Evanescence necklace. A full size poster of Amy Lee. Oh, I know Savannah would have claimed that. She thought Amy Lee was the prettiest girl she ever saw. I almost didn't see the card...it was still wrapped so tight in the paper. A beautiful note that read like their mystical lyrics to me, Lisa, signed by Miss Lee herself. That is my favorite. I took it with me to work today and had to show everyone. Most didn't have a clue (their loss), but I told them it doesn't matter. It means something to me. I had field work to do today. I took the box along. Stopped by 3 other phone company offices and made everyone see and hear the story. Oh, what a day I had. On cloud nine. I smiled all day. Except...what was up with these radio stations? No Evanescence ALL day. Maybe I miss it. Anyway, upon entering Russellville right before quiting time...Seether with Broken came on. For those who know...Amy sings on that single. Finally. I grabbed the card out of the back seat and gave thanks for everyone. The circumstances surrounding WHY this all transpired SUCKS, but God works through the hearts of his people. The most popular band in the world right now and they send a mourning mommy a package. AWESOME!!!

Gotta get the young'n in bed. Jerry is already upstairs asleep. Cassie better not take up the whole bed tonight. I am too wound to sleep. Can't stay on the computer, cause it is my bedroom. Good night to all and pleasant dreams. Butterflies dancing on the breeze.

Tuesday, September 28, 2004 6:21 AM CDT

AAAAAAAAAAAAAAAGGGGGGGGGGGGGGGGGHHHHHHHHHHHHHHHH!!!!!!!!!!

I got it! I will write later. I can't believe it. My name is written. The beautiful voice. I can hear Savannah laughing. I really can. She knows. Cassie wants to take everything to school. NOOOOOOOOO. I am taking it all to work. Ann and Joel, I don't know how you did it. Blessings to the both of you and everyone else who pulled some strings. I'll write later.I have field work to do today and the Installation banquet tonight. Do I have to do an acceptance speach, like a state of the union or something? I guess I best find out.

Sunday, September 26, 2004 11:05 AM CDT

It is a relaxed Sunday at the Hurley home. Jerry is working on the Harley (surprise surprise). Actually, he it putting on his new tires. Cassie is making more bead art for Make A Child Smile kids and siblings. She has been spending an hour on just one. She wants a perfect design. I have to brag on her. Her school work and behavior this week was phenominal. I am so proud of her. Some days she has attitude problems. Today she is the perfect child. I LOVE days like this. I have been going through old uniforms, clothes, and toys. Bagging them up for Good Will.

Jerry worked late Fri night and worked yesterday. Gotta pay for those tires. Hahaha! But I got a lot done in his absense. I went out to lunch with some women I used to work with at the phone company. All but two of us have retired. It was great. For me not caring for women, I have always loved being around this group. We are going to do this again on Oct 30th. I already can't wait. Cassie got ungrounded from the tv and computer last night (from attitude issues), so she had a movie fest. She watched a MaryKate and Ashley movie and Ella Enchanted. We all watched the latter. It was cute. Cassie absolutely loves it when Jerry and I sit down and watch a movie with her. Irene ended up not coming over this weekend, maybe next.

I want to keep some of Savannah's clothes. I was looking at her most recent clothes, when she was obese from the steroids. At first I wanted to keep them. Then I got angry. Now I want to get rid of them, and only keep some of her prediagnosis clothes. I so want to keep her in my mind as healthy. EXCEPT she wasn't. Her lemon sized brain tumor (which basically NEVER shrunk) was a part of her, and therefore everything that came with it was part of her. Parents shouldn't have to think like this. My sweet Bundle. I had a GOOD cry and scream yesterday morning. Most of the time it is just little tears and my trying to stop them before someone sees me. I like the privacy to let my emotions release. To be alone. Cassie asked me...what did you do this morning? Well, I did laundry, went grocery shopping, had lunch with retired co-workers, cried, made you bacon sandwiches for breakfast...YOU CRIED? WHY?...(they do listen some times, I couldn't believe she picked up on that). I miss Bundle. You know I always cry, I told her. Yeah, you do, she replied. It is soooo important that she knows it is okay to cry. You don't have to hide it. I can cry while alone and not be ashamed. I can cry in front of her (not like I do in private). Hopefully, when she begins her grieving process she will not be ashamed or scared to cry. Tears release toxins. That is a medical reason why it is good to occasionally cry. Maybe this is why women live longer than men?

I have to iron some beadwork now. I need the twins over to spend the night. They also need to make this beadwork with Cassie!!!Hint hint Lisa W. Find a spot for us in your schedule. Cassie will be with me the next two weeks. I also bought a bottle of wine for the mommas.

Wednesday, September 22, 2004 6:06 PM CDT

I took out the unicorn picture and replaced it with another one of her Kindergarten graduation pictures. You have seen a different one before. She was sooooooooo happy that day. There was no facial paralysis. But remember even though she graduated, we put her back into K the next August. That was when the bottom pictures were taken. 14lb weight loss in 2 1/2 months. 26 percent body weight gone. I may put in more later. I have some real precious ones of her in the church. I have just been a little hesitant about the other kids being in it. Oh well.

Oh yeah, remember my long hair? Hopefully a little girl is wearing it now. It is now past my shoulders. One more year and hopefully I can donate a couple more 14" ponytails. I like me with long hair better and the growing out sucks. But ya know what? It is worth it!!! I tell myself that when I am having a bad hair day (lots of them when it is in an inbetween stage).

I don't know why Harlei's site didn't appear. www.caringbridge.org/oh/harleiparker
***************************************

I started out remembering Priceless moments. Like when Lisa, Jerry, and I were upstairs. Cassie calls out…mommy. Jerry calls down to her…I’ll be there in a minute, honey. Priceless. And when Jerry asked the girls if he could date their mommy. Cassie says…it’s about time. And Savannah says…why don’t you just marry her. Priceless. Then the sound when Savannah’s lungs were full. DEATH! AAAGGGGGGGGHHHHHHHH!!!!!!!! WHY? WHY? WHY did this thought have to pop up? From smiles to tears is 5 seconds. I am so glad I was alone. I never even got a chance to think of more priceless moments. I am pissed. My ability to concentrate on good times have been stolen from me with the death of my child. They creep in at unexpected times. I can look at pictures I have of her after she passed and I can be fine. Then other times, out of the blue, POW! I am angry at the loss of control I have with my mind. So I write. I write for myself mainly. I can get it out without having to tell someone face to face. That way I don’t run the risk of them saying something that hurts me or pisses me off. I also write for other parents. Parents who need to read that they are normal in their grief. We all grieve differently, but we all have similarities. Some seem to function better than others, but this is no way means it is easier. I hide mine well. I bet no one at work knows I don’t wear makeup anymore because I still cry daily, right here at my desk or outside when I go smoke. I have an amazing man, but I don’t cry on his shoulder. He hurts, too. So I go on and write. There are good times. Happy moments secure in my memories. Then there are the ultimate horror memories. The nightmare I can’t wake up from.

I think we caretakers, as individuals have a harder time. Our existence, our individuality was stolen from us. We had to change who we were, what we did, our dreams, our goals, how we lived our lives. We had to change. Our purpose became just 1 thing…caretaker…this includes being a parent, spouse, or child. Our life ceased! We may be angry about that. We have a right. But then we accept and just take care of a terminally ill patient. We are thrown into a different world, spiraling in doctors, medicines, MRI’s, needles. Life goes out of control. We hold on because we love unconditionally. We change, yet we are the same. I am more compassionate. I am not as scared. Yet I have little tolerance for idiots. And as every day passes I am convinced they multiply exponentially. I may be oblivious to some things, yet pick minute body language or eye shifting. Instead of always giving everybody the benefit of the doubt, I now may just say it like it is. I am a much harder person, but I also know I am a much softer embracing person. Now, what happens to us when that individual passes on? We flounder. Our existance again is shattered. We lost ourselves and now we lost who we become. Somehow we must rest our souls then rebuild. For all those who were so much a part of my life, you still are! That will never change. It is not really Lisa time. Maybe it is a numb time. But really I think it is our body's and psychy's way of resting from acute trauma, a trauma we lived day in and day out, everytime we touched our child. Hell, everytime we breathed. We did this for months and possibly years on end. Now, it is shut down time. A pulling back, reaccessing. I have seen this with many parents and spouses. So it must be normal. That was the world according to Lisa Hurley. I am sure a shrink would have a field day with me.

I want everyone to visit Harlei’s site . Angelique’s house is gone. Read her attitude on it. Nothing but amazing. Kudos to you. You have life in perspective. Leave her a message. She may not have time to post much…she’ll be laundering her one outfit. But keep the Parkers’ in your prayers. Please.

God Bless you all. You have a clue. You just coming to these sites...to be a part of our journeys...to feel a bit of our pain...to leave encouraging words...Thank You.

Tuesday, September 21, 2004 6:09 AM CDT

What an up and down weekend. Friday night we all went to the fair. Cassie and Irene had a blast. However, Cassie was presenting quite the attitude before we left. Right as we were walking out the door to go, we get a call. Jerry's friend is at the AR/OK border. I just told him to come on to Russellville. So we had company by the time we got home from the fair. The girls slept in my bed and I slept on the floor by the bed. They watched movies 'til the wee hours of the morn. That way, the guys were free to visit all night if they wanted.

Us girls left at 9am to go to their Girl Scout kickoff. They had a blast. This was when I broke down. I started crying and just couldn't stop. I planned on shopping but couldn't stop the tears long enough to walk down an aisle. I went home. The guys were visiting, so I hid in the bathroom. Sweet privacy. I really cranked the music LOUD and found me a corner to weep in. Every time I though I could stop, it started again. I lost control of my emotions. Naked alone in fetal position in a corner bawling my body into convulsions. I bet there are a few parents out there that have been where I went. After about 1/2 hour I got in the shower briefly because I still had to get Cassie. I quickly left the house and couldn't even get out of the garage before it hit me again. I started dry heaving. I started really getting upset with myself. I had to pick up Cassie, take Irene and Mia home, and I had out of town company, and I am breaking down. I stopped by Sonic to get something to eat (I figured at least the dry heaving would stop). It took my 1/2 hour until I got to the point I could finally eat something. I was feeling so weak.

Well, everything turned out all right. Things got bright when I got my daughter. She looked so cute. So looked like a girl scout. We talked and jammed to music all the way home. Then she went to her dads'. The guys were gone, so I watched the rest of Savannah's funeral. Then it was just time to come out of my funk. I did. The three of us had a terrific time together later on that night.

Thank you for all your posts. They help me tremendously. Please don't worry about me. I am grieving just fine. I would be lying next to Savannah in bed when she was alive and I would think, someday she won't be here. Remember this moment...cherish it...never forget. I would say things like this to myself daily. Someday is here. It has been here for almost five months. It will be here for the rest of my life. All I have left is my memories. As an old friend once told me, you will ALWAYS have your memories. No one can take those from you. These memories belong to me. And they make me smile.

Friday, September 17, 2004 2:40 PM CDT

Yesterday was fun. Our crew is even on the front page of the Courier. I was at work before 7am. Then was at the United Way gathering by 8am. At 9, we were in Dardanelle getting our instructions. We were right by Sharon's house. I was on work time so couldn't stop by...sorry! Anyway, we tore down walls, knocked down studs. removed nails from lumber, and cleaned up the place. No AC, no plumbing, live wires, no ventilation. But it was a blast. I kept thinking this would be a good time to vent anger, but I couldn't think of anything to be angry about so I just had fun. We got done just about the time I had to leave to go to Sacred Heart. I was flushed, sweaty, and didn't smell fresh. Everyone else got to go home and bath, but I was off for the next event.

Cookie Dough!!! Eight 18lb boxes I carried to the car. Four trips to the car. My arms were liquid. I checked in at the office then went out to help the distribution. When it was time for school to be let out, I joined the rest of the parents waiting. Father Charlie even came out with his pet boa constrictor Betty for the kids to see. It was good to see him again. I dropped Cassie off with her daddy and delivered cookie dough until after 5. I was beat. A cold shower never felt so good. Audrey and Kevin then came over for a short visit. I tell you, when I went to bed, I slept like a rock.

Cassie brought home her yearbook. They have a full page memorial on Savannah. It is beautiful. And on the front cover in the front row sits my little bundle butt. Oh, I miss her.

Gotta deliver more cookie dough now with Cassie and Irene. Then off to the fair with Laura, her clan, and Audrey and Kevin with their clan.

Thursday, September 16, 2004 7:23 AM CDT

This is my post from last night, but I put it on a disc and am putting it on this morning. Computer problems.

Cassie started Girl Scouts today, a Junior! Saturday’s events got changed. They have a Girl Scout kick off. Irene is still coming on Fri night. I will take both the girls to the Girl Scout kickoff Saturday morning. Cookie dough also arrives tomorrow. And I am going to aid the tearing down of walls for ‘The Week of Caring’. It will be busy.

On my way to pick to Cassie from Sacred Heart, I heard the Daniel Bettingfield song, I Gotta Get Through This. That was the first song that came on the radio the night I was told Savannah had a terminal brain tumor. I prayed for endurance to get through what was just handed to me. That was my first prayer to God. How? How is a parent supposed to get through this? How was I going to be able to do this for Savannah? And what about Cassie? The dice were cast. Now I had to play out a game I wanted no part of. I told Christy the next day about the song. About a week later I got my cell phone. She sent me that song as a ringer. It still plays when I get a call. I still have to get through this. It will take a lifetime. Part of normal depression is guilt. Sometimes us bereaved parents look for guilt where there is none. Sometimes it is founded, if denial was a factor. But that was never the case with me. I search for things to be guilty of. I should have not made her cry because I didn’t give her a specific item she wanted. That kind of thing. BUT I also know it was my job to parent. Parenting in itself is a guilt trip. At least if you are a good parent. We feel this but realize no matter how uncomfortable, it is still our job. And we must make decisions for our children that they don’t like. My real guilt is that I could not take her on another Disney cruise. BUT SHE WAS TOO SICK! And that rendered that impossible. Now the anger comes into play. Yeah, I have a lot of that. I am angry that she was never afforded health in a way that allowed her one more trip. We did so much during her 10-month honeymoon phase. We packed a lifetime in. I am thankful for that. I really am. I can write volumes on my anger. You will never see it in my demeanor. But I do have a short fuse when adults do childish things. Grow up, my child couldn’t! I think that but don’t voice it.

I am getting together a package for a new Oklahoma friend from Broken Arrow. Just about neighbors. This little girl, Savannah, has Cystic Fibrosis. Please check out her web site and post a note. I bet you can figure out how to get there. Cassie still wants to make something for her. Then I will get the little box off.

I am going to brag on the man in my life, and I don’t care if he likes it or not. Originally, Saturday he was going to do a poker run, return home, and we were all going to go to the bike rally. Then the Girl Scout thing happened. The only thing he said was…there will be more poker runs but this is a priority. He is even coming with us, to Girl Scouts!!! Savannah picked a good one. That never would have happened in our old household. He would have done his thing, and I would have seen to the girls.

Monday, September 13, 2004 8:07 AM CDT

I went through more boxes on Saturday of Savannah’s stuff and projects. I went through pictures, too. It is a very slow process. What do I do with all of this? Do I keep it all? Can I give some away? Are some items even worth keeping? Can Cassie use some of it? I actually have a box filled with unopened little crafts and gifts that Savannah was never able to use. I found sheets of stickers inadvertently mixed in with her projects. I have decided MACS would be a good place to pass this on, too. After living through having a MACS kid, it is important to remember ALL the siblings. I sent a box off to Melody last week. Cassie made some stuff for her and her brother. I even got something for her mom. Back on the subject. I shed a lot of tears. It is so very hard to do this, but it was time. I seem to spend a few hours every other week. I keep finding more and more boxes filled with stuff. I think I have found them all now. I have a full bag of toys to go to Good Will now, as well.

I found more of her jewelry people sent her. I don’t think I ever shared this before. But these events change us. I wear her jewelry. I have two of her bracelets on today. I try to wear something of hers daily. I still wear her angel lapel pin daily. I still wear sleeveless shirts for her tattoo. Her unicorn is covered, but that is my private one. I wear her fingernail polish. Right now I have electric green on my toes. I also put a coat of her red sparkles over it. It keeps me physically closer to her. I guess it is a part of me that has become eccentric to the outside world.

Cassie’s friend Irene is going to spend the weekend with us. I have lots of plans. This week is our county fair. I think Fri night we will do the carnival thing. Junk food and rides. Right up their alley. Sat is a motorcycle rally on Mt. Magazine, the highest point in the state. It is also where Jerry is constructing the large resort. And I plan on making the girls cook a big Sunday meal. Cassie loves to cook. I bought a baking chicken. A little salt and pepper and into the oven. They can clean potatoes and carrots. And they can make a salad and possibly cookies for desert. Sound good? It is making me hungry now. I think there will be a lot of pride in making a full nutritious family meal, as well as fun.

Saturday night, Jerry and I went to the club for about 1½ hours. The strangest thing happened. We were dancing, and Savannah started talking to me. It was like she was right there in my mind. Maybe I just needed her and my brain accommodated me. Regardless, it was a good thing. I won’t go into the conversation. It is too private, but I did cry. I was happy and sad. I miss her so much. Then she said she had to go and faded away. The music started to fade back in and I realized we were dancing to Knocking on Heaven’s Door. I wiped my tears on Jerry’s t-shirt and sat back down. It gives me a tingle from my brainstem down my spine.

Wednesday, September 8, 2004 4:53 PM CDT

Computer problems!!!!!!!!! Apparently my printer/scanner is looping and crashing my system. Jerry has been messing with this for almost a week.

Was everyone else sick over the weekend? Saturday I was so tired I remained in bed for the most part of the day. Jerry followed suit on Sunday. Then Monday he is do nauseous he doesn't eat. 10:30pm Cassie wakes up projectile vomitting. So Tuesday I stayed home with her. And now I have bronchitas. Hopefully, this will end it for the year. Yeah, right!

Guess what? Jerry has talked me into going to Sparks with him. My first real motorcycle rally. This will be interesting. Probably a whole lot of fun. I told him this would be equivalent of him going to a Charity Ball. (okay, I've never gone to one either) Maybe equal to a real opera. Yeah, that works. I love the big theater. I also love small theater. Back the the rally. I will drive my Sequoyah. Follow him out there. I wouldn't make the bike ride on that seat. Very uncomfortable and no vibration. Can't figure out what the hupla is about, but his friend promised me a ride on his bike. I'll take him up on it.

I have been throwing myself into Kiwanis. Don't know if this will delay grieving or help me cope, but it will keep me busy. I have a lot of ideas and a great group of people to work with. I follow a very strong president. Big shoes and such, but he got the club in a good solid place. I hope I can ground what he has started and fine tune it. That is my goal. I decided I will take Cassie to events with me. She will be bored at times, but she needs to understand why this will take a lot of time. Also she will be with me, and hopefully will work side by side with me. Monday through Wed. of next week we will be at the schools in Russellville promoting our Builders Clubs and Key Club. Cassie doesn't even attend school in this county, so this will be all alien to her. I have also printed out info from Make A Child Smile so our clubs can participate if they individually choose to. Had to get an outreach there to this new world I live in.

Speaking og MACS...Sept has a little girl named Melody, another pontine glioma. Please stop by and send a card or gift to her and/or the other featured kids. It meant so much to Savannah to get packages. She also has a web site, but I leave it to you to find it. Us caringbridge families are resourceful.

Still have a Ducky race in mind for GKTW/MAW. I want it big enough to make state news. But I have to take office and get the ball rolling. It will be a long time before that evolves.

Please pray for a little girl named Mary Grace. She is related to Lisa Wells' husband. She fights a hard battle right now. Her web site is www.caringbridge.org/ga/marygrace .

While laying in bed this weekend, I thought about Savannah as a baby and as a little girl. I smiled a lot.

Tuesday, August 31, 2004 7:55 AM CDT

Almost a week since I updated, shame on me.

Lisa C. surprised me Fri night. She came bearing beers of Germany for a belated birthday. I put down my Kiwanis stuff I was working on and we toured Germany. Lisa, Jerry, and I had a blast. We lined the empties up by our preferences. She also brought a bottle of Australian wine (we postponed our trip to Australia until last night). Afterwards, Jerry sent me out with Kevin and Audrey. The club was boring. It was crowded with college kids, smoky, and the dj played crappy music. We watched the Olympics. I started not feeling well. I couldn’t even drink my beer. Sat I woke up feeling like I had been run over. I hurt all over and just wanted to stay in bed. My upper torso felt sooooo bloated that I could barely eat or drink anything. This went on ALL day and night.

Sunday I had plans to go to the ‘Masters of Florence’ exhibit in Memphis with Lisa C. I was determined. We left a bit after 7am. We got to the exhibit right before 11am. There were just a couple people there. I knew ‘church’ time would be the best time to go. All other times are packed. IT WAS WONDERFUL. We read all the info, listened to the whole tape, and discussed most of the pieces. I have never FULLY enjoyed an exhibit until this. Catherine the Great was incredible, but the crowds took away from it. After we went to eat and headed to Beale St. We listened to a couple blues bands and had a beer (okay, Lisa C had the beer, remember I was too sick and bloated).

One the way home, we got stuck in a traffic jam on the interstate. After quite a while we turned around (like the other 50 cars in front) and drove back to Hazen. We didn’t know where we were going, but we figured a bit south, then head east. How lost could we get in rice fields? We attempted to get back on the interstate at Carlisle, but the bridge was shut off. Back south then east to Lonoke. Yeah…back on the interstate. A channel 4 van drove by us. So we decided we would have to watch the news and find out what was going on. The two of us had an absolute blast. Even though I felt like crap, it was so wonderful to do something like I would do pre children. Oh, the bridge was crumbling and falling onto the interstate. Nice, huh?

The three of us started walking last night. We only went 1½ miles. My calves were hurting. I have never been this out of shape or this heavy in my life. This might be a big reason why I feel crappy. Going from a 5/7 to an 11 in 8 months is ridiculous. Cassie was excited about walking. She got dressed to go. My God, she is growing up. There was this young lady before me. No more little girl to take to the walking paths. She is thinning up and getting tall. My baby is growing up. It just hit me. What! She says because I just stare at her. Oh no, breast development and hips will be next. What am I going to do? Any ideas how to keep them younger? No shaving, no makeup, careful on the clothes, basically no growing up too soon. Ha, then she said something about having a baby, boy or girl! I said after she has a cat and dog, meaning after she moves away from home. But what if I have one before, you will baby sit. Ha, I will not. You raise your own kids, so make sure you are old enough. Subject dropped. Yeooowww. These are difficult subjects. Even if they are in jest.

Now it is Tues. Still feel like my gut is in the way and it makes me uncomfortable. Cassie is excited about the daily walking routine. Oh, while on the trails I kept flashing back to walking years ago with my ex. We got along then, well actually, this is how we maintained. Times were good. We talked, we spent time together. He was not an absent husband. It hurt me deeply to realize how he chose his playtime over his wife and children. I need to make new memories there, and I will because I still have not gotten over the pain of my divorce. Jerry just wants to be my lover, not my friend, so this makes it harder on me. Yeah, lot of baggage, I guess.

I cried yesterday as I waited for the bus. I miss Savannah so much. I still haven’t worn makeup. I can’t trust the tears. Don’t know when they will hit. I lay in bed last night with Cassie and left room on the other side to hold my little redhead. She just wasn’t there.

Wednesday, August 25, 2004 6:57 AM CDT

First week of school has ended. Cassie said it went good. She spent the weekend at Irene’s, her best friend from school. This is cute…I get this message on my cell phone. Hi mommy…I miss you…call me if you can…I love you. (side line here, she sounded just like Savannah, I shed a couple tears and saved the message) So I call her back. Hi mom. What’s up? I’m fine, having lots of fun. I love you. See you tomorrow. Bye. So I think after all was said and done, I missed her a lot more than she missed me. This is a good thing. My little kitten is growing up. Oh, she never coughed once while I was on the phone with her.

I am going to see the Renaissance exhibit in Memphis this weekend. I thought about taking Cassie with me, but I think she is too young. I know my child. She isn’t patient enough to look at stuff all day. I was dragged around Italy as a child for vacations. So I am going to love this. I haven’t decided if I will go to Memphis on both Sat and Sun. It is a 3½ hour drive, but honestly, I don’t need to do nightlife there alone.

Please keep the children in hospice in your prayers. I learned this morning of another little boys death from a pontine glioma. I thought of the mother and son often, they live in Germany, but I got busy with my situation. He was under a new treatment which is not done in the US, dentric(sp?) cells. I hoped this would be the cure we had prayed for. I did read where cannabis may stop the progression of brain tumors by slowing the blood flow to the tumor. Cool huh? Yes, and it is the chemical to make you high that doesn’t allow the blood to flow. Wouldn’t that be something.

Life goes by day by day. I am doing this. And I still try everyday to learn something new. I am soooooooo tired. Maybe Cassie will lay down with me…right?

And also Jerry has requested his private life not made public. So I will cease updates on him.

Monday, August 23, 2004 5:04 PM CDT

First week of school has ended. Cassie said it went good. She spent the weekend at Irene’s, her best friend from school. This is cute…I get this message on my cell phone. Hi mommy…I miss…call me if you can…I love you. (side line here, she sounded just like Savannah, I shed a couple tears and saved the message) So I call her back. Hi mom. What’s up? I’m fine, having lots of fun. I love you. See you tomorrow. Bye. So I think after all was said and done, I missed her more than she missed me. This is a good thing. My little kitten is growing up. Oh, she never coughed once while I was on the phone with her.

I am going to see the Renaissance exhibit in Memphis next weekend. I thought about taking Cassie with me, but I think she is too young. So I will go this weekend while she is with her father. I know my child. She isn’t patient enough to look at stuff all day. I was dragged around Italy as a child for vacations. So I am going to love this.

Please keep the children in hospice in your prayers. I learned this morning of another little boys death from a pontine glioma. I thought of the mother and son often, they live in Germany, but I got busy with my situation. He was under a new treatment which is not done in the US, dentric(sp?) cells. I hoped this would be the cure we had prayed for. I did read where cannabis may stop the progression of brain tumors by slowing the blood flow to the tumor. Cool huh? Yes, and it is the chemical to make you high that doesn’t allow the blood to flow. Wouldn’t that be something.

Life goes by day by day. I am doing this. And I still try everyday to learn something new. I am soooooooo tired. Maybe Cassie will lay down with me…right?

Thursday, August 19, 2004 12:21 AM CDT

My birthday has come and gone. School is underway. Jerry’s 45th birthday is this Saturday. Two more children are preparing to transition. And I miss my baby.

We went to the ‘club’ on Mon. It was also the bar managers birthday. We had a great time. Didn’t get inebriated, though. I had to be at work at 7am. Work was not cruel. A couple ‘over the hill’ things and a beautiful pair of earrings.

I thought everything was going fine in the morning, dropping Cassie off at the bus stop. Sigh! A parent glanced at my tattoo as I was walking back to the car. A parent to a new student. And it hit. Only one child got on the bus. IT IS NOT RIGHT! IT IS NOT RIGHT! They tears came with a vengeance. I sat in the parking lot for five minutes just bawling. My face was swollen, my eyes red and glassy, my voice shaky. This is how I started off my birthday at work. 40 didn’t bother me, but my loss did. Don’t know if anyone realized that or not.

I took Cassie to the Dr. after work. Double ear infection. The drainage has had her coughing for almost 4 weeks causing her asthma to flair up. I couldn’t get the coughing to stop. I had kept adding another drug to no avail. I swear, I go into an almost panic mode so easily. Damn, I heard Savannah suffocate to death. I don’t want to hear Cassie’s lungs close off. I know, hyper sensitive right now. Well duh! Maybe all this is God’s way of side tracking me from spiraling into a pit of despair because I figured school starting up would kill me.

Oh, I had Cassie get me Nickelback, Saliva, and Harry Nilsson (Son of Schmilsson) for my birthday. I told her she had excellent musical taste. She laughed and said, yeah mom, you picked it out. She can already pick out Nickelback. We had strawberry whipped cream cake and listened to Harry Nilsson on Sunday night. Jerry got me a beautiful leather jacket. I told him, you are bound and determined to get me to ride with you. Yeah! He almost got me chaps, but I have leather pants. And my other leather jacket is too thin to ride.

He is having Savannah’s face etched into a plate to go on the bike. It will also say Savannah Hurley Harley. He is underway with changes now. This winter he wants to paint her on the gas tank. Then the front end gets changed to stock. And then he plans to enter her in competitions. She will be a beautiful tribute to his lost love. I wonder if he can paint her on his helmet, too?

Okay…Jerry.
First I need to tell about me. Very briefly…my children would NEVER be involved in my dating. PERIOD! I had NO intention of a serious relationship until after the girls were in college. I believe it is NOT good for children to go in and out of the dating scene, bonding then ripping, bonding then ripping. My divorce from their father was too much already.

I met Jerry a couple times prior to my 39th birthday. Laura had invited him to my birthday party and I said sure. Well, he asked me out but knew my feelings. We decided to JUST be friends and have dinner once a month for company sake. Worked well both of us. Neither wanted a relationship. Also I value friends much more than lovers. He is a painter, and had asked to paint the girls, mostly because of Savannah’s illness. We found a picture and he went to work. NOW…this is important…Mark’s mom was an artist, and she told me, you must always know your subjects to capture their personality, otherwise the painting lacks character. So, because we were NEVER going to be boyfriend and girlfriend, I asked him to meet the girls. Male friends of mine, the girls have always been around. I made dinner. Everyone had a good time. A couple days later, he showed me their portrait. The hair and eye color were wrong. Another dinner. He let the girls actually paint on the canvas. And that concluded him knowing my children (or so we thought).

I got the portrait. A couple days went past and Savannah asked when he was coming back. I explained he wasn’t. It wasn’t proper. Well, little hands fly on little hips and then she proceeded to tell me I am rude. And it is proper to thank him with dinner and where were my manners? She had me. So I invite him for a thank you dinner. Upon leaving, Savannah tells Jerry to be here at six tomorrow night. She is cooking his dinner. I told her no and she looked at me with a fury in her eyes. She was determined. And I thought. Lisa, your daughter is dying, if she wants to make dinner for her newfound friend, who am I to stop this. Basically, he never left after that.

About a month later, he asked the girls if he could have their permission to date their mommy. Whoa! Cassie says…it is about time. Savannah spins around, grins from ear to ear, and says…why don’t you just marry her? That required a cigarette and a beer. Most of this is in the journal history.

The girls never saw physical affection between the two of us, until Savannah went into hospice. Then we both needed it. All they ever saw was a growing friendship. Jerry over at the house was always about the children. When they were at daddy’s, it was very different. To this day, we do not have a normal live in relationship. He has the upstairs, except Cassie requests him to sleep on the sofa, so he can be close. She has never seen his bare chest, let alone his bare feet.

There you have it…more than you need to know, I am sure.

Sunday, August 15, 2004 10:14 AM CDT

Savannah,

I saw Amy Lee last night. You ALWAYS talked about how beautiful she is. That angelic voice. Every day we would listen to her singing those dark painful lyrics, and many times by your request. I sang all the lyrics...belted them out. I stood for you baby. Cassie stood with me, arms waving in the air the whole time. So much sadness, but I didn't even cry. That is surprising because I always cry. Cassie even kept checking me. What a strange painful world we entered through the simple words, your daughter has a massive lession on her brainstem. Oh well, we have and must continue.

The concert was intense. Maybe it was me that was so intense. After all, this music got me through my two lost loves. And it still does. The pain is so intense. It has not gotten any better with time. Thank God I have Jerry to hold me up. It was their last concert on their tour. They came home. You would have liked to watch all of them have a blast on stage. I can hear your giggle.

Almost every song sung last night has been posted on your website at one point in time. They didn't sing Hello but they did sing two of their songs on the european cd. Yeah, I belted those out, too.

Honey, I was able to fulfill one of your dreams. And in doing so, I fulfilled one of mine. Thank you, love. I was able to scream out my agony in an arena. It felt so good. There were lots of little girls at the concert. I thought of you. Duh! I always think of you. We talked about you on the way to Little Rock. While walking inside, we talked about pushing your wheelchair. And people would ask about you on my shoulder. Baby, you were so with us. I miss you Savannah. 'Death before my eyes, lying next to me I fear, she becons me shall I give in'and 'I want to die'...Those lyrics are so powerful to me. I wanted to die for you, so you could have life. I begged God. I pleaded with God.

Sweetie, I have learned that the quote is true
"Grief is not a sign of weakness, nor a lack of faith....it is the price of love." I also learned that because I love intensely and unconditionally, that I can love again. I have 'your man' and i also embrace children. I refuse to close off that part of my life. It does not honor you. But that is not to say this is easy. So many times I just want to go away. I miss you touching my face. I miss you wiping away my tears. I miss your little voice. I miss your smell. I miss the way you made the whole room laugh. I miss your dances. I miss sleeping with you every night. Baby, I miss you with every fiber of my existence.

Jerry takes such good care of me. He went grocery shopping so I could rest. We were on the porch this morning and watched our neighbor leave with his 4 wheeler. I thought, yeah, it is about widow time. But Jerry stays here with Cassie and me. It's what we need. And you found him and brought him into our lives. Wise beyond your years.

Tomorrow is my birthday. It will be empty without you. It is also the first day of school. It will be very hard on your 'sissy'. I want the routine of the school year, but I also fear it. Half of the routine has angel wings now. 'hold on to me love, you know I can't stay long, all I wanted to say was I love you and I'm not afraid, can you hear me, can you feel me in your arms?' evanescence

We all hurt. Jerry especially. Oh, what you did to that man. To find the love of your life in a dying child. He owes you his life. You were a good teacher.

I am going to make a peach pie today for my birthday. I haven't had peach pie on my birthday the last two years. And I am also going to make a strawberry whipped cream jelly roll. Yum! Your favorite as well as mine.

Fly through the clouds today. I will be looking for you.

Love,
mommy

Thursday, August 12, 2004 12:19 AM CDT

What a BLAST!!!

Debbie, Donna, Michele, Christine, and myself converged at Bull Shoals Lake on Saturday. Debbie had the place all decorated. It was like old times. Months or years can pass yet when we get together, it is as if no time has passed. The longest was Michelle and I. We figured seven years.

We started out needing a group name. It was decided, the Kaleidoscopes…always colorful…ever changing. Our motto is ’40 and TIGHT!’ (that was mine) We hollered that the whole time up there. Christine’s four-year-old daughter also had a name for us, the gInas (that is a hard I). You can figure it out. That was soooooo cute we decided to name our spy club that.

We played a game…murder/mystery/spy game, hence the name. We all were assigned characters, and we had to develop them prior to getting there. We rocked. Everyone fit theirs’ perfectly. We tried and tried to play it straight, but kept laughing at each other. We add libbed some of our lines. In doing this, pulled in our past. It was unique just to us. Michele and Debbie invited the resort owner to play with us. Mostly he was just the picture taker. We looked awesome.

We all were supposed to bring a game or something. I choose to do hair; straighteners, curling irons, gels, and sprays. All the girls looked hot with long straight hair (except Debbie, she has short hair, but she was hot none the less). Deb had questions we had to answer about each other. I determined, we know each other well.

Somehow, the streaking never happened. Maybe we were naked so long, it never mattered. We did lots of skinny dipping and just hanging out on the boat. As Christine says, if ya can’t get naked around your childhood friends, who can ya get naked around. Got a point there. I lost my skinny dipping virginity at the boat dock. I decided to get it over with, in case I was shy. I laughed for 10 minutes straight. Debbie, Donna, and I just floated around on rafts ‘til the first truck showed up. We had a happening dock for quite a while. And us stuck in the water. The next day, we took out the boat for the day. Anchored off in a cove and got naked again. In the water…on the boat…eating lunch. What an incredible feeling. YMCA came on and I said this is Savannah’s favorite dancing song. The three nudies stood on the boat and danced Savannah’s routine to YMCA. You know, if Savannah was there, she would have chucked her clothes and joined us up front. My spitfire would have been proud of us. Chris said she would remember that sight always. I remember her laughing so hard, I thought she would cramp up. We had ALL parts covered in SPF. Those bright white tushies were blinding.

It was so sad to leave. This trip did us all so good.

Coming home was wonderful. My voice mail was filled with morning and evening messages from one very sad/lonely man telling me to have fun. So sweet. I got to thinking…this has been our first separation since Savannah invited him over for dinner. I have never felt such separation pains so intense in my life. The cell phone couldn’t even connect from where we were. Part of me was lost. I have come to rely on Jerry’s presence to make me feel whole. This is sooooo NOT me. I told Donna, and she laughed. Yeah, it’s not you, she said. I guess it is the new me, the same, but different.

Now, I have to find a place that will develop my pictures. I don’t want to get arrested for 40 year old naked women acting goofy. You would have thought one of us would have had a digital camera, but NOOOOOOOOO. Hahahahahaha. The hunt is on.

A couple people have asked me to tell them who Carol Baan is. Carol is just famous to me and her family, especially her son Kyle, 4 yrs in remission now for a bt. We met on one of my yahoo support groups. She is one of several people who taught me how to fight for my child. I owe her and many others for the extra months I had with my daughter.

I also changed the song. I think any bereaved parent or spouse can relate to it.

Thursday, August 5, 2004 9:11 PM CDT

Tonight will be short. I am exhausted. My computer is starting to poop again. Aggghhh.

Tomorrow is Celeste's Celebration of Life Ceremony. Do not forget my angel, Tami, Jer, Ella, and Grant's angel. Link to her site. Post an, I'm sorry. Love that child and mother as I have. We MUST make that baby's life mean something.

I ordered them something, and now I kick myself. It is back ordered until mid Sept. Just two weeks ago I was going to do it, but I told Jerry...it is not time yet. Aggghhhh...I kick myself again.

I hurt. There is no greater pain on earth than to lose your child. Now, attempt it with dignity, honor, and grace to your offspring? Hard, ain't it? You world crumbles around you. You begin to see a truth you never imagined before. God opens your eyes to true love and faith. You see the hypocrosy that exists. It is almost laughable. What is soooo important in most people's lives, now you see really means nothing in the game of life. Things are put in perspective.

Thank you so much for the posts. I read them all. I embrace them all. It may not be my exact way of thinking but I am IN every one of them. I WISH with all my heart I could respond to them all. I fail miserably. I have not the time. Excuses I can come up with. Cassie is symptomatic with her asthma again, I am in a hole of grief, I don't wear makeup to work because I can no longer count the times I cry per day that no one sees. Yeah, pathetic, huh. I sit at the computer with a lone tear running down my face at least a dozen times per day. Life goes on. I don't expect others to wait. I have entered my own world. THAT IS NORMAL. I have noticed most bereaved parents last about 6 months. They reach out, they relive again and again. Then they move on. Live MUST continue for the sake of the rest of the family. They back off then. I told Jerry, I guess i have three more months until I fade or burn. He says there is nothing normal about me. Wise man. However, he has also seen my grief, and he probably agrees I need a break. I can't right now. I love these children. I love their parents.

This weekend is the big 40 bash with my childhood girlfriends. 5th grade...can you believe it. 40 fo me is on the 16th. I have been told us girls are going to streak (that is scarey), we are going to skinny dip, and we are going to be 14 again. hahahahhaha. I love these girls. I will let you know what happens.

Tuesday, August 3, 2004 7:34 PM CDT

Celeste...sweet sweet Celeste. Heaven has a new angel. A beautiful addition to God's children. Another spitfire. I could do nothing but cry all morning. Cassie mourned with me. She attached to Celeste. She always would say...mommy, she is soooo cute...she looks like my sister...she is sooo cute. Death has become common place here. It is so hard. But it is also life and also love. There is nothing more beautiful than the love of the innocent. I certainly can't compete with that. I am so honored to know these children, to somehow connect through the tragedy that been their past several months. And in no way does this mean their lives have been tragic. I just HATE that they had to live through this cancer in their pons.

If I read one time that her ending was peaceful, I will scream, then cry like a new born. I am so sorry. Our childrens lungs filled up with fluid. They struggled. They became comatose. They died. What the hell is peaceful about suffocation? WHAT? Nothing. So they were asleep, so what? I heard, they heard. Did they hear when her lungs reached their max? Did they know then, no miracle was left? That instant? When God takes their child from them? I don't even want to know. All I do know, is I was there. I heard my daughter's last breath. I am sure they heard my sweet Celeste's, too. Damn it, she was a baby!!!!! What life was she allowed? I know, All she knew was love, unconditional love by mommy, daddy, and EVERYONE else. I know, the way to go. That is good for us, but not our kids. My baby, my Tami, my Celeste.

I am so proud of Tami, my heart explodes. I grieve, my heart bleeds for her loss, for her families loss, for mine, cassie, and Jerry's loss (not for Savannah) but for our Celeste. I want to brag on Tami. I am sure this is not appropriate, but I don't care. The first time I talked to her I could barely hear her on the phone. I hurt for her, but I also thought how is this woman going to take this journey. She seemed so weak to me. I watched her grow, as a woman, as a mother, as an individual. Her telephone converstaions, her letters, her journal entries. I think I know the pride a parent feels. I have actually cried because I am so proud of her, because she has grown, and I feel grown past me. A strong woman. A beautiful tender mother. A devoted wife. I am honored to call her my friend, my sister. This will mean nothing to her now. She may never read what I write today. That is okay. This journal is for me.

Not an hour has gone by in the last six months that I have not thought of her and Celeste. I check daily on them. Please please please link to her site. Say, I am sorry for your loss. There really isn't a whole lot else you can say. The grand plan thing I can deal with now. Please don't say that to her. IF you EVER watch a CHILD die, watch them sruggle to breath because God allows their lungs to fill with fluid and you can't do a freak'n thing to stop it, you CANNOT comprehend a grand plan. We as parents have to find a way to deal, to cope. (okay, Cassie has me listening to Britney Spears, right now) WHY WHY WHY would God take a CHILD, a child loved, adored, cherished from loving devoted parents? Can't see a grand plan, and I have a VERY open mind! Celeste is an angel. Savannah is an angel. And let's not sugar coat it. Our children are dead. There lives were stolen by a cancer that has NO chance of a cure, none. My babies all die. Damn it, they all ultimately die. I am sorry. I don't EVER want to take hope from any mommy or daddy. This hurts. This F'n hurts! Someday, there will be a first. I pray, with every ounce of my existance, for everyone to be the first.

I have not been good this month. This month has been getting worse, not better. It is normal. I want to grieve. I want to grieve for Isaac, Celeste, and Katherine. Let me grieve. These beautiful children deserved better. I couldn't help them. I hurt because I couldn't save them. Hell, I couldn't even say my own child.

What I want for my birthday is a shirt with all my kids that have lost their lives to a pontine glioma but have beat the beast by attaining wings to soar. YOU KNOW, THIS IS F'N SCAREY, I could fill a shirt. This pisses me off. This is rare. What about common pedi cancers? They are lft behind? That isn't even fair. I want it sleeveless, so my angel shows. My personal, ultimate agony shows. I will wear it for any and all fundraisers for children.

I hurt so much. I love so much. Please support my sister. Please love her, Celeste, Jer, her family. I am so tired of crying today, but I wouldn't change a thing. I am honored to mourn for them and with them. I know I make no sense to anyone but me. I am sane, so sane it makes you sick. Love Celeste's family. Celeste is now at peace. She is with my child. Soaring.

Wednesday, July 28, 2004 3:48 PM CDT

Check out the new picture! Thank you Kris. They are perfect.
--------------------------------------
IT ROCKED!!!

12 Stones
Puddle of Mud
Nickelback
3 Doors Down

The weather was wonderful. Mid 70s. Gentle breeze off the river. Reserved seating sold out and lawn seating packed. So many kids. I LOVED IT. Think about this…when I was young, concerts were a fog of pot smoke. Kids were embarrassed to even have parents. Empty bottles lying around. What a great new trend. Kids hanging out with their parents. No drugs in sight. Yeah, a lot of explicit lyrics…but like the kids aren’t going to hear that elsewhere. I think they just have to learn the time and place for that. Kids growing up and having fun with their parents. What a great era to be in. The kids weren’t running around unattended. They hung with mom or dad and seemed to be LOVING it. Way cool. I can’t wait for my first concert with my daughter. Just 18 days away.

All the bands were great. Nickelback was tremendous. Very seldom did we sit down.

The encore was Jared’s song. I stood beside/behind Jerry, holding onto his waist. My head resting on his shoulders. Savannah slightly itching my shoulder. My hair lightly blowing across her. I said Savannah this is Jared’s, and the tears began. Just gentle tears for his momma, daddy, and brother. The stream didn’t stop until the last word was sung. It meant something to hear it live. It was the true highlight of the night. Sad, yes, but an honor.

Puddle of Mud’s Blurry (my favorite of theirs) was awesome. They had the whole place singing She Fing Hates Me. Jerry was amazed he actually knew so many of the songs. He just never knew who sang them. When the bands had the audience sing…whoa…you could hear the lyrics loud and clear. Every band had a great performance. I am so glad we went.

I got the pictures back. The flash is bleaching out Savannah’s face. I need to try again…maybe outside, so not to have to use a flash. Got a cute one of Cassie and Jerry on the Harley. I’ll need to get them scanned.

Today is my mom’s birthday. A very Happy Birthday to her. ‘Tis a shame she is in St. Louis and most likely working, otherwise I would make her dinner.

Wednesday, July 28, 2004 7:13 AM CDT

A rough evening. Cassie went to her father’s house. I worked a bit late, timing it so I wouldn’t come home to an empty house. So much for that. Jerry stopped by the Roadhouse for a while to chitchat. Shady and I sat on the front porch swing and drank a couple beers (alright, I did the drinking, not the dog). I would cry for a while, then zone out, cry for a while, and then zone again. I can’t say I thought about much. I think my head was just blank.

I got to get out of the office yesterday and drove up past Fayetteville and Springdale to do some work. Windshield time was peaceful. I did cry a bit. But that is okay. I just listened to music. One of my favorite things to do. I was afraid the empty house would pull me down. It did. Jerry wanted me to put on my leather pants and go for a ride. He had his chaps on (quite fine). I didn’t feel like going. But watching him walk around in chaps is easy on the eyes. Much better then staring at the trees.

Tonight we go see 3 Doors Down, Nickelback, and Puddle of Mud in Little Rock. Jared will always be associated with 3 Doors Down. I will have tears tonight. It has been cool here. It got to 76 yesterday. Very odd for a day in July in Arkansas. I hope it is warm enough so I can wear a sleeveless shirt tonight. I want to show off the tattoo.

I talked with my ex earlier. He said Cassie had a bad night. She was scared. He had to lay down with her for 20 minutes. Then he says he was informed that she still sleeps with me. Yeah. Wonder when he thought this would have stopped. Anyway, he says, she in nine, don’t you think it is time you start weaning her? No, she can sleep with me until she is seventeen. Well, I don’t think that is good. Well, that is the way it is. Now, this was always an issue between us. I believe in the family bed. Always have, so I can’t see me somehow changing now. This topic has come up a couple times on my support groups. Ya know what? This is COMMON. Also the kids are different. Have you ever-noticed…start paying attention. I have heard that these family bed kids are the most stable as adults. Not to say if your kid doesn’t sleep with you, they won’t be. How can you not be close with your parents if you sleep next to each other? That has got to be the most comforting feeling in the whole world. She isn’t going to want to sleep with me forever. Someday, Cassie will want to be by herself, puberty is right around the corner. Or maybe not, maybe it will wait until she goes away to college. But…this is the kicker…HOW CAN SHE SNEAK AROUND IS SHE SLEEPS WITH ME. I think this is added protection for the teenage years.

Time to go to the concert.

Thursday, July 22, 2004 6:32 PM CDT

The Angel on my shoulder is born. She is beauty with wings encasing her radiant smile. I had a wonderful time while in pain. And when I left, all I wanted to do was cry. My baby became a complete angel. Of course she has been one, but this made it physical. It was a sort of release. A FOREVER statement of love and life of a vibrant child sent to God. I now have a 1/2 sleeve tattoo. I would have wagered big bucks just two yrs ago that permanent ink in my skin would never happen. But gladly I gave my arm for my brave daughter. I wish I could do more. Until my dying day, I have not only my Guardian angel, but a special angel always on my shoulder. How lucky am I? I am so happy I can cry, and probably will.

Celeste, thank you for the wonderful post. Everyone thank you for the wonderful posts.

I can't wait to show this tat off. Next Tues, I got tickets to see Nickelback, 3 Doors Down, and Puddle of Mud. What a perfect place to allow Savannah to live again through the inquiries of this work of art on my body in honor of my beloved daughter. 3 Doors Down will be a hard one. I know I will cry. 'Here Without You' will always be Jarod's. Please check out his web site. Riannon has changed the pictures. www.caringbridge.org/ca/jaydog Look at the beautiful portrait of him on the main page. Absolutely awesome! She sent it to me a while back. I still look at it all the time. Jerry is home from drying his hair. Gotta go.
--------------------------------------

The day before she died, I was at work. Daddy was with her at the hospital. She began vomitting. It required deep suctioning to get it out. She continued this hourly all day. Mark never told me other than she vomitted once in the morning. I was beside myself when I found out. I was on the phone with her pediatrician and hospice and Jerry went to the hospital. Mark exitted immediately. Savannah vomitted once while Jerry was there. They were finishing her up when I came in. The aspiration pnuemonia had begun. Jerry said I had been protected from the vomitting all day. It was a horid experience. I had been sheltered by angels, for I had the final path to take her on that night. Part of me is jealous. Damn it, I should have been there for her. Her daddy never touched her. She was left alone, not being touched, cradled, kissed ALL DAY LONG. Jerry got there and climbed right into bed with her. The nurse came in and said, thank god you are here now, daddy. Thank God he was cradling her during her last vomitting episode. I was preparing for her death.

Somehow I should have known, I should have felt her trauma. But I didn't. I was in my own world at work. Jerry is insistant, I was needed later and therefore was kept away mind and body. I can't help it, I should have been there. I wouldn't have hesitated to use their suction machine. I may have been able to start before the nurses got there. What would that have done...bought her a few more hours? She was ready. But it would have bought me a few more hours. I just miss her. I hurt. I can't stop sleeping. I am so tired. I am fine during the day, just so tired.

Wednesday, July 21, 2004 8:30 PM CDT

i just updated a ton and it vanished...ticked me off. oh well, 'tis minor in the scheme of things.

DEATH
We will either survive or flounder. Probably a combination of both when it, especially when it comes to our kids. How do you know which you are? A marriage will either survive or be destroyed. Can you see this in others? Anyone care to wager? I'm not referring to Jerry and myself. Savannah chose her man to love, hold, and cherish her, until death did they part. Not many have the opportunity or gift to find the ONE like she did.

How do relationships survive and how do they crumble? My ideas...it starts with mommies...operative word...MOMMY. Mommy has the final sayso. If this is understood and embraced, it will survive. If daddy is supportive of mommy and the unimaginable and intangible bond between mother and child then a team is formed. Some mommies are crap...they don't count in this generality. And I certainly don't mean to offend any father, daddy, or sperm donor here.

Men take control and fix things. This is good. I LOVE this about men. This is why I like men much more then I like women. But what happens when it can't be fixed? How can they preform their primal function while we mommies preform ours? See a problem developing here? Now, what happens, because they know no better than to start making decisions for the family (mommy is a basketcase), for the betterment of the family? This is the downfall. The bigger downfall...US WOMEN...we allow this to happen. This is when our strength should be at its strongest. Fighting for our children, and we allow someone else to make decisions regarding our children. Yeah, us women can be pathetic. It becomes anomosity now. We grieve, mourn, become weak, hate ourselves, our child is dying, or is dead...we are angry. Who took our options from us? In their best efforts to fix a problem, the man is damned. By his choice. Us humans are so fickle. This is why relationships fail. The world according to Lisa. I thank God, mine was ended before this all took place. It was divine intervention that caused it. The swift kick and very painful kick, to ensure my daughter life. My daughter NEVER would have lived 18 months post diagnosis if I was in the relationship I was in. I had to be alone. I had to fight for ONLY my child. The responsibility had to be mine. Not the drs as my ex wanted it. Mine as mommy. PERIOD. And because I did it, I have no regrets. Some (but she was never capable of a Disney cruise) I can't help but having. Life I gave my daughter. I never clouded my mind with denial. That, to me was cruel to her. But this is just me and my life, my daughter, my other daughter equal in every standing, my beautiful children.

Sunday, July 18, 2004 9:11 AM CDT

As most of you know, Ketherine has beat the beast and earned her wings. Please link to her site and wish the family well. Their nightmare is not over. They have just changed chapters.

Celeste seems to be stable. This sounds odd because she is so near death. But for those parents who have lived this, we understand. Any moment it can change and be the end. What a f'd up way to live.

I went to Kiwanis officer training yesterday. It was very good. But I kept hearing bikes go by. I think they were doing a poker run. My mind went elsewhere. This is still funny because I have only made it 9 miles. But I wanted to be behind my man with the wind in my hair.

Jerry got notification he will be moving to Fayetteville in January. He is terrified of losing us. It is only a 2 hour drive. He will be home on the weekends. Cassie is very upset with this. But this is his field of work and he is excellent at it. At least he didn't have to go the NC.

Grief hits us all so differently. I think Jerry is getting obsessed with me finding someone else. I can't seem to make him understand. Everyone else bores me.

Please note the new song above. I saved this one for after Savannah passed. It just now became the right time. Our kids get to go on Wish Trips. Us parents need something like that, too. Without my music, specifically, Evanescence (Amy's angelic voice in the depths of dispaire and Ben's lyrical gift to make it alive)and Eminem (his anger and frustration vented out in rap), I could not have survived. So Guess what...

I have tickets to EVANESCENCE in Little Rock on August 14th. I have had them for a month. Great seats from what I can tell. I am taking Cassie and Jerry with me. This is my birthday present to myself. I turn 40 on the 16th. I already know I will cry the whole time. I am okay with this. I will sit inbetween the two of them so not to disturb the other concert goers.

And Savannah gets her Angel wings on Thursday. It is time. I am looking forward to watching the needles push ink into my skin. It does hurt, but it brings me closer to my daughter. All the needles she had to endure. And most of them went into a permanent fixture buried in her chest. She died with her port implanted as I will die with the ink permanently in the tissue. I can't wait. Yeah, I guess to the world...look at the bereaved parent...that's the mom of the little girl who died...doing crazy stuff. Maybe so, but it seems pretty sane to me. No matter where I go people comment on the tattoo. I keep my child alive. What is crazy about that? She continues to live.

Wednesday, July 14, 2004 7:35 PM CDT

We need prayers of safe passage and comfort. I have changed the links for the first time on this site.

Celeste and Katherine are nearing the end of their journey. They have the same type of brain tumor. Please please send your prayers. Leave them a post. If you don't know what to say...say...I'm thinking about you. Read the past journal entries. Get to know these kids. Make their short lives mean a little more. Time has limited them. But their stories can and will keep them alive.

I had a wonderful conversation with Carol last night. Her daughter past just two months ago. We grieve together. The same disease, our daughters the same age, other children, the fears, the tears, our weaknesses, our selfishness, our love. We bawled together, we laughed together, we talked about things we both understood because we are here at the same time. It was painful, I can't lie, but I need the pain. It is part of grieving. We talked about the steroids, what our girls became, how it makes us sick thinking about it. We talked about missing them, loving them, not understanding why? I only wish she was not so far away. I want so much to hold eachother and cry. And then we will shortly have two more angels. I KNOW the pain. Carol and I know the pain. Carol, Norine, Kathy, Jan, Dave, Yvonne, Karen, Jerry, Robert, Molly, Bill ALL KNOW THE PAIN. This bond sucks. This bond is wonderful in a sick sense. I wouldn't wish anyone to know this pain. But I couldn't live as well without the strength they showed me that I had. The special society of chosen kids who die from cancer and the parents who are blessed and honored to be their parents.

On a brighter note (well, maybe not) I am doing things I never thought I COULD ever do. Like I thought I could live through the last 21 months? I really like the bike. I think I really like being behind Jerry. I have never felt so at ease with ANYONE other than my children. We have so much fun together. Nothing is off limits. What wonderful freedom to have. Maybe we need a little freedom now in our lives. We live in hell, remember. So it is just another coping mechanism. I wish I could go back to the mundane (never thought life was mundane when I was living it, but what the hell did I know?). Cassie is home. I feel joy and comfort in my spine, my hearyt, and my soul. I have my baby back. Savannah is in my heart and on my shoulder. I need wings. I need to have the tattoo finished now. It is time. Dang, I'll be all tatted up by the time I am 45. Oh well! I am not the same person I was two years ago. I must live because my daughter could not.

Friday, July 9, 2004 4:12 PM CDT

I don't have diabetes! I had to go in to the dr this morning for a fasting glucose test. 89. I have this spot on my leg...been there a yr. The dermotologist said they are common among diabetics. I don't have to have diabetes to have it though, which I don't. Even trauma for one year.

Yesterday I watched the first 10 minutes of Savannah's funeral on videotape. I was driving home from work and thought...I wish I could see it. it's a shame we didn't videotape it. wait! We did. a lone unmarked tape. i then wasn't sure if i could deal with it. i really thought i was doing fine but later on all i wanted to do was drink myself into oblivion. which i did NOT do. I just wished it. i think it was overload. i am to a point to watch my baby's funeral, gonna find out if i'm diabetic in the am, and then get a letter from ex's lawyer wanting to ajust child support. just too much. went to bed depressed and listened to the thunderstorm.

tomorrow jerry will accompany me to Ft. Smith for a Kiwanis function. One of their clubs is having a 40th birthday dinner. As Pres Elect, I said I will attend. I am glad I didn't resign my post. I need this to dive into. Then next Sat, I have 5 1/2 hrs of officer training in another town.

i've been very busy at work doing the budget. i started a new project to add today. couldn't find and material on it from past yrs, so started from scratch. I cranked. it felt good, and i got that one done. hopefully, i can get another one out on mon.

Please check out this other little girls site
www.caringbridge.org/ca/rayanne
She also has a pontine glioma, and has just finished radiation. From reading up on her, the type of cancer is most likely different from Savannah's, for hers shrunk tremendously. Normally this means it is a much higher grade faster growing cancer. Please keep her family in your prayers, and please stop by and leave a word on encouragement.

time to go. jerry is home.

Tuesday, July 6, 2004 4:17 PM CDT

We stayed at a hotel over the weekend. at 4:30am, bang, bang, bang...st.louis police department. we woke from a dead sleep and only about 3 hours of it. i thought...i swear i didn't do anything wrong. what could i have done wrong? jerry says, it's got to be your car. you can't think woken up like that. i go to the door and ask not even thinking to put clothes on. but before i open the door, i realize this. no my car is fine. what is it then. hold on, let me put clothes on. are you a part of the wedding party? they ask. NO, i'm up here for a college graduation party. well, there was a report of a girl from the wedding group coming down here and into this room. no girl came in as far as i know. now i am dressed. i open the door and invite them in. no thank you, sorry to bother you. sigh, all three were nice looking. now, about 15 minutes later, we are trying still to go back to sleep. we hear a door open from across the hall, probably 2 doors down. we hear light walking by our room and out the corridor. I told Jerry...there she goes. most people would really get pissed over this. i could but i don't have the time nor energy I would have to put out to get angry. i decided it was funny instead. yeah it screwed up our well needed and deserved sleep, but oh well.

sat we had a great time at amy's party. it is so hard to believe this little girl has grown up and graduated from college. after that we went to dana's annual 4th of July party. Eric, Elke, Tyler, Erica, Dana, Susan, Mary, Leslie, etc. etc. were all in attendence. it was so good talking to everyone. as tyler says...when we get together it seems like no time is passed. i agree 100%. and i also think that this is how it is with true life long friends.

Sunday, July 4, 2004 8:09 PM CDT

HAPPY 4TH OF JULY!

My angel's favorite holiday of the whole year. She was such a patriot. Believed in the USA. Believed the USA was blessed and therefore had a responsibility.

Savannah believed sometimes war was necessary. I remember she thought it was bad...period until the week before we were at her maw trip. The news just released the story of the prison filled with children had been freed. I never really allowed news too much after diagnosis. We had enough tragedy in out house. Don't know how this one we watched...BUT it forever changed her life. She said...mommy, we have to go to war. I know men will die. But it is our responsibility to save the children in the world from bad people. We fought for freedom and got it. Lots of people died. but we have to continue. (now, I am floored...at this time she just turned six) Yes, Savannah really talked like this. Understanding my losses already, I saw she understood so much more than I did. She was right. And because of that some of my views have softened. Children can see without the blinders of adulthood. They see clearly and purely. I have had people tell me, what does a child know? They think with a child's mind. Duh, how much closer to God and the truth can that be? Well, didn't mean to go off on a tangent...just a memory.

Happy 4th! Celebrate our independence. The most wonderful country in the world. Happy Birthday United States of America. Your greatest supporter now overlooks this great country from heaven.

We made it home. I will update later. All good with fun stories to share.

Thursday, July 1, 2004 8:45 PM CDT

tomorrow, jerry and i go back to st. louis.

i will see my parents at linda's. i understand that this is all very misguided, good intentions. this is why i have not erupted.

cassie goes to her daddy's. i hurt for that loss.

we took cassie to play pool this evening. on the way home we watched an incredible view. blue clouds contrasted against pink clouds with a rainbow shooting straight up off to the right. awesome. lightening splattered accross the sky, never touching down. we talked of savannah. I could not bring myself to say it yesterday, but 6-30-04 marks 2 months. cassie and i feel it has been much much longer then 2 months. jerry feels that it was just last week. grieving is so very different.

he awakened last night to his beard being pulled. hard enough to lift his head off the pillow. savannah would so this when she was aggrevated at him. he would be teasing her and she would yank...hard. remember steroids. even if it was something she was just frustrated with. yank. i told him maybe it is time. it is time for us to begin to mourn. nine weeks. that is a long enough vacation. it is time for her to come home now. but she won't. the selfish hurt begins. is this why i cried so much on wed?


cassie is talking about her sister a little more and more. she is growing tired of being an only child. i think when school starts we will all really really have a hard time. summer is always so chaotic.

i do miss my little bundle. my redheaded vibrant blue eyed bundle. yes, cassie and i had a year to mourn prior to jerry entering into our lives. he missed the daily tears. the uncontrolable sobs. the angel in trianing cradling mommy as i wept in her lap. this household was filled with love unimaginable, tears of laughter and tears of anguish, tears of joy and tears of utter grief. hugs, kisses, nibbles, "mommy...stop eating me!" savannah had the cutest thighs. and a tushy that would fit in your hand. cassies golden waves i couldn't keep my hands out of. all right! i constantly touch my kids. if you don't, you don't have a clue what you are missing.

i want to go to bed and not get up. her remains still sit in a box on the dest just 24" from my head. her whole physicalness (I know that isn't a word...it seems appropriate, doesn't it?)

what is wrong? what the hell is wrong? it seems so natural with just cassie here. I am so scared of that. is this a gift? it scares me.

did i ever write that i heard when her lungs finally completely filled up with fluid. no O2. i heard it. no more room. no air. time to die. I HEARD IT. I knew it was seconds away. her heart just had to stop. I HEARD IT! Damn it, I HEARD IT. Nobody should ever ever have to hear this.

Wednesday, June 30, 2004 7:56 PM CDT

the continuation...
please check yesterdays journal entry.

i no longer want to go into what happened in detail. all i will say is IF i would have had to wait for one more red light on the way to Patty's I would have had no idead where Cassie was. I would not have gone to my mothers to check, i would have called...after I would have waited outside Patty's house for 1/2 an hour or so. i would have had NO idea where she was...er? i was L I V I D. then it gets turned around and it is somehow my fault. then dad calls today and i was asked why i didn't call last night when i got home? apparently, they waited up for me. I was at a civic/work conference...not visiting them. and like the last thing i wanted to do was call anyway. i would have had to hear how much more of a piece of crap i am as a daughter or how cassie is a horrible child. i was not in the mood. my sinuses hurt real bad, i was exhausted from crying and being pissed, and i was a time bomb. you don't take someones child. i don't care if you are the grandparent.

This was not a babysitting deal. I OFFERRED her time with her granddaughter. It fouled up another's time with her...plus she had to play taxi service and then hear about how SHE didn't have enough time with her granddaughter. AAGGGGHHH!!!! I know I am venting. This will not happen again. I will most likely avoid bringing Cassie up. I am at a conference and have to CONSTANTLY make out schedules for my child. this was to be done prior to me leaving. but NOOOOOOOOOOO. the world revolves around others. I was BUSY! And Cassie suffered. She cried with me in the car for the first 20 minutes. She kept telling me, I am sorry. It is NOT your fault. What would have happened if...? What would have happened if my grandparents pulled that on her when I was a child?

I love my mom with all my heart. But she has changed. She picks Cassie and I out. Does she blame me for my daughters illness and subsequent death? She acts like it. Does she blame Cassie for her sisters death? I know the answer is no, but it sure is funny that this began after Savannah got diagnosed. Frustration due to the circumstances let out on those who have to live daily with it.

Tuesday, June 29, 2004 8:55 PM CDT

Just pulled in town...got bunches to write, good and bad.

the Kiwanis international conference was WONDERFUL. i took advantage of as many of the forums as I could get in. didn't see anyone from my club until the beginning of voting yesterday. voting was cool. kind boring, but very parlimentarian. the international pres had quite a sense of humor and was very caring about the proceedings. yesterday and today were very long voting days.

i didn't hang out with the MO/ARK district folks. I was HOME! I was able to see Patty and famile, Chris and famile, and Eric and famile. Then at dinner Mon nite, got a special treat. Tyler and Erika came over. Tyler, oh tyler. he was my best buddy in college. he and i would go out to parties all the time together. mark never would go. tyler ALWAYS made sure I got home, ALWAYS. and he was ALWAYS a complete gentleman. I had and have the utmost respect for that man. I remember studying for my EE final. school standard, 40% failed. I studied, studied, and studied. at 7:30 he calls me. i am picking you up. you need a beer. he took me to brewsters. it is time to take a break. i still believe, because i was able to relax, i aced that final (still got a c in that class, yeah, i was failing prior to that).

almost at the end of the conference, we honored a widow and her children along with two other men who took down an armed gunman. when the widow and familt were introduced, the 4000+ rose and applauded. after a while, the speaker said something. everyone ignored him and kept applauding, and kept it up and kept it. my eyes were filled with tears. i know loss. i have lost two of the four people i loved most in the world in the past two years. yes, i know loss. and we still stood in honor and kept applauding. finally, after minutes, we sat. she said something and began to get choked up. again we stood and applauded. my heart was...i don't know...i hurt...i was humbled. we finished within a half an hour. i began my walk to my car. Savannah...I miss you. the tears came. and came. i dried up while waiting for my car. got in and released. MY BABY IS GONE. I MISS HER. MY HEART IS FOREVER BROKEN. I bawled as i drove to pick up cassie at patty's house. it was torents. i don't think i have cried that hard since she became an angel. i screamed. i cried. i hurt so bad. my child is gone from me. i miss her so much. i actually could think about her as my skinny daughter. those who have had their kids on the steroids understand this. it is just not the physical appearance. we parents are not that vain. it is what comes with it. skinny life. i have been mourning this for a long time. in my mind ear, i listened for...mommy? what baby? mommy? what bundle?...mommy? what savannah? i love you. oh, sweetheart, i love you too with every breath i take.

i pull up in front of patty's flat...clean up my face...and go get cassie so we can get out of town because i am breaking down, fast. cassie isn't here. your mom said you are picking her up at her house. you knew about it. what? what the hell? she took my daughter? she was supposed to have her back HERE at noon. NO, I know nothing about this. I was livid. i will go into it later. BUT I will say, THIS will NEVER happen again. Good intentions or not, you NEVER remove a child from her appointed guardian without permission. I don't give a shit, who you are. i am the parent...PERIOD!

i'll finish tommorow.

oh, celest seems to have stabilized a bit. thank God.
www.caringbridge.org/pa/celeste Please visit and post.

Thursday, June 24, 2004 6:49 PM CDT

Cassie is nine.

It will be so good to visit my home town this weekend. I checked the Fox...nothing. It would have been nice to see some theater. I got my bags packed. I miss the big city. But I admit I like population 25K much better. Everywhere I go I know someone. I can count the times I go to Walmart and DON'T see anyone I know.

The one thing Savannah wanted but I could not give her was a Disney cruise. We had been on one in June of 2001. I was still married, and Mark got a huge bonus after completing the Fort Smith library. We splurged. We went with my sister and her family. It was incredible. I was packing and ran across pictures. Savannah at 4, prediagnosis. Skinny little spitfire. Long straight red hair (no mommy, my hair is orange, your is red). The smile on her face in every picture could have sunk a thousand ships. She glowed when she was standing by the princesses. I opened up her Arial jewelry box. It plays Under the Sea. I held a wrap someone sent her from HI. I cried. The loss is unimaginable. BUT this time, instead of crying...i am sorry baby that i couldn't get you on the cruise...i cried...you had a magical time, the time you went. The music died just then. Just like Savannah. Just dead stop. It slowed just a little before it was cut short...just like Savannah. F&^%!

This entry is going to be long....

Celeste was put into hospice today. My sweet Celeste. My heart aches. I don't know what to say to Tami other than I love her and her daughter. I am bonded to her, yet we have never met. We both don tattoos for our girls. Our warriors, our loves, our lives. Hope is Never lost. But you can be realistic and hope for the miracle on earth. I love them and Tami will hurt the most painful way possible. She will have to let Celeste go. I pray you greet her and show her around, Savannah.

'Savannah, I sent her a bunch of your stickers today. Her left arm doesn't work now and she can't walk. Show her how much fun the stickers are, baby. And when it is time, hold her hand. I love you sweet princess, my princess. Mommy misses you so much. I can't smell you anymore. I close my eyes and try to feel your touch, but I can't. I know you are happy. When you left, you have never revisited. You know I am okay. You prepared Cassie and I by bringing in Jerry. You made a family before you left us. This still cuts down on my dating ability, baby. Hahaha. I know you think that is funny. Find Celeste, sweetheart. She will start to sleep. Find her then. Tell her it is okay. Her body is too messed up to stay. Tell her to come with you so she can run and play again. Tell her you will teach her how to dance. Time is different in heaven. We will all be there shortly. Baby, I want you in heaven. But it hurts me so. But I want you to stay there. I love you.'

"Give me just one second and I'll be alright" that's a line from a song. The song escapes me at the moment. Oh yeah, my cell phome plays that. Daniel Bettingfield.

Okay...All day long...all day long...I hear evanescence and dido. eight maybe nine times, at least.it was wonderful.

I really am okay. Actually, I am very good considering. I haven't cried like this in a while. I am supposed to. I should cry more. Sometimes I wonder what the hell is wrong with me because I am dealing so well. Yes, I read on death, grieving, what to expect, yadayada. Then...the pissy part...people can't believe I am doing well. They take offense or something. Try to help. I am in a GOOD place and they question and I feel they are trying to bring me down. I am FINE with GOD. I have every right to hate him, but I don't. Like today...have you found God 'yes, we are tight'. Not good enough...do you read your bible...not enough...well it will help. I shut up here and think...What? I just said yes, I have God in my life, we are at a good place, better than most. I am good with God, yet he allowed my daughter to die. I REALLY AM OKAY with this. Kinda sucks a big one, but I am okay! I want to say, are you trying to f&^% me up? I know they mean it out of caring, but you don't know me. This was from one of my drs today. Well, that sends me spiraling down again. I start questioning myself all over. You can't help it. Obviously, something is wrong with me, or they wouldn't say such things. She is only trying to help. I should never have written I smoke a pack a day now. And average 3 drinks a night. I don't get drunk very often. And then it is probably more tipsy. Lord I try sometimes, but something always stops me (like I dance it off). I nurse my drinks over several hours. Two nights ago, I opened one and just couldn't drink it. Down the drain. Wasn't in the mood I guess. I AM OKAY. I am supposed to be a blubbering idiot right now and I am not. Aggghhh!!! It would make everyone so freak'n happy if I just lost it and had some kind of breakdown, needed help to deal, done all the stuff every one dreams about doing in their dark phases. Well, so sorry to disappoint the general population. I am so sorry I disappointed everyone again (I went through this when I got divorced. If I dated right away, I wanted a change of lifestyle, if I didn't openly date, I was seeing a married man, if this didn't pan out, I am gay. Oh please...grow up) Please don't question me unless you know me and my habits. I realize this is the bible belt. Alcohol is evil, yet you can pound prescription pills to make life disappear, go figure. Nothing against anti-depressants at all. Please understand. It is just my not choice. I am a self control freak. I have another daughter to raise and get through her tragic loss as well. I can't take a dark path. Even temporary.

Now, unbeknownst to this kindhearted soul who wanted to reach out and help me truly find God...I am sent whirling into an emotional f'up. This in my journal. A journey of Savannah. It is for future parents of children with life threatening illnesses. One family's journal, one family's struggle, what we lived, how we survived, how you can possibly move on. One a footnote, it is also my therapy.

Before I get a bunch of people freaking on me...did I do or say something wrong...NO!!! YOU ARE NOT THE TYPE. YOU ARE HERE. Those who don't bother with the long version are the ones that can hurt you. You have stayed for the ups and downs. You don't hurt me. You support me. You may not agree with me...but you think, dang it, she is getting thru this, maybe there is more than one way, maybe her way is the best for her, what do I know? Yeah, y'all got it! Thank God for every one of you. You can respond. Please don't be scared. I watch myself. Jerry watches me. I am so uptight, I ask people to watch for behavioral changes in me. HELLO? I am somewhat sane, in the insane journey I have taken.

Tuesday, June 22, 2004 5:36 AM CDT

Wonderful surprise. Mark stopped by with Cassie to pick up her Advair. 'Can I spend the night, mommy?' Yipppeee!!! I felt so light. I had a lot for her to do. Made a list (Savannah would be proud). She finished the whole list. Three more chapters left to read of her book. She hates to read. For both her parents being avid readers, this has always confused me. I always thought the best way to teach was through example. Well, it isn't working here.

I fell asleep reading at 8. Slept for 45 minutes. Then couldn't get to sleep last night. After I did, I slept. Remember me saying I have to retrain myself to sleep. More often then not, I now sleep through the night. I think that changed after our vacation. I haven't been dropping in bed at 8:30pm and dragging my sorry butt out of bed at 6am. Sleep but no rest. Getting better.

The electric blue polish is out. For all of those who know Savannah and I have had matching piggies for months. I have electric green piggies now.

Jerry's first day was fine. I think he surprised his boss with how much he did know about computers and programs. This is good. But I still warn him. Careful not to be too good. They will transfer you away to a bigger job. Took his bike to the shop. He needs a new tire before the roadtrip this weekend.

My first Kiwanis International conference. I admit, I have never done anything like this before. I am a bit nervous. Yeah, after everything I have been through. Ha! Cassie is coming with me. She is going to stay with Chris two nights and Patty two nights. They said they wanted her for sleepovers, while they were down for the funeral. I rearranged the schedule with Mark to do this. I know they have Grant's Farm in the plans. I love that place. St. Louis is a COOL place to visit. They have bunches of free things to do. And if you schedule good, even more things are free on certain days or a certain time.

Monday, June 21, 2004 6:08 AM CDT

Jerry starts a new job today up on Mt. Magazine. He applied as a carpenter and they hired him as a field engr, which is actually his field. He had reservations over the weekend. He doesn't want to travel. Unfortunately, after this job is over, it is a big possibility. He is scared of what it will do to Cassie and myself. We will deal with that when the time comes. We have to deal with life right now. We have to grieve. No time to spend wasted energy on the future right now.

We cry daily. He takes his bike out and I just cry where ever. Couldn't deal with mass yesterday. Talked to mom, she said she had a real hard time. I am glad I skipped. Church is hard on me still. It keeps bringing the pain to a head. Yes, I am comforted but also swirl in anguish.

Saturday I took my longest ride on the bike. Our neighbor asked us along to some deal in Ozark, but we just went to the Roadhouse instead. Ate lunch and had a couple drinks with several bikers. Jerry was in his element. I would call it a kind of brotherhood. Yet, I was completely at ease. All this was so alien to me, but it was almost natural being there. Am I that comfortable with my man?

You know how some people affect your whole being? 'You don't remember me, but I remember you.''You saw me mourning my love for you and touched my hand. I knew you loved me then'. Evanescence. Last Wed. I took him to Altus for a date. We had a bet going. I lost. We ate at Fat Tuesday. Drove for a while. Then stopped by the club on the way home. It was comfortable.

Fri went late to the club. 'Rags' put on 'Bring Me to Life", and said this is for you Lisa. I went up alone. I am usually completely alone on the dancefloor for this one. Holding my shoulder. Swinging around. My song of grief. My song for my daughter. Savannah's favorite song. She always said Amy Lee was so beautiful. Play it again, mommy.

Andrea and Paulette...thank you from Jerry for the Father's Day card. His eyes got watery. Lisa C. came over Sat. When she read the card, she did cry. His first Father's Day card ever. We were so touched. Thank you. Gotta go to work.

Wednesday, June 16, 2004 4:39 PM CDT

Jerry wants to thank you all. Not ONE person said he looks like Sam Eliott. He has been told that for over 16 yrs. He was even told that while we were down in FL.


Thank you all for your wonderful posts of support. I think it really helped him. You know the truth, but comments from those you love can still sting.

Shari...hahahaha...actually jerry looks nothing like the late jerry garcia. plus he is way way too skinny to look like him either. hohni...jerry says he has never been called a distinguished gentleman in his entire life. i asked him to grow his hair long and grow a beard. he was all clean shaven when we met. I like the shaggy look. He says this is probably the best picture of him ever.

today i was returning from field work. a car was driving along side of me. a little girl, around seven was in the passenger seat. she looked over at me and smiled. i swear she was an angel. one of those smiles were God shines through in a pure form...a child. i smiled back at her. let them get ahead. and burst out in tears. i wasn't sad. i was happy. i felt God. i felt peace. i felt love. i saw purity. i saw innocence. i felt comfort.

Tracee from Norwalk, Ia. i loved your insight. many mirrors to my own belief.

M Elton...jerry did NOT have the dream childhood. Actually, he says he was pretty much of an asshole before us. And still listening to the JG collection. Listened to #2 this morning.

Karen Riebe from Oak Grove, MN told me the line that eased my heart. 'And why would God send him to you only to judge him moving in?' Well said!

I would love to respond to everyone. But I seldom even get on my email. I am taking him on a date tonight. Gotta go. Love and peace to all.

Wednesday, June 16, 2004 9:13 AM CDT

NEW PHOTOS NEW PHOTOS NEW PHOTOS

For all of those who want to see what Jerry looks like.

I will update tonight.

Saturday, June 12, 2004 10:02 AM CDT

Everyone, including me always thinks of my daughter when they hear Evanescence or Dido. One of the guys at work always has a radio on low. I never hear anything unless it is a song by the above-mentioned artists. Weird. When I first got in the pool on vacation, a lady came and set up music. White Flag. I stayed in the deep end by myself, treaded water, and cried. Even when I swam to the bottom, I could hear it.

Cassie’s asthma seems to be under control for the time being. Good thing, too, she goes to daddy’s for the week. Jerry has been with her since we got home. He has been wonderful monitoring her meds and breathing. I don’t want her to go. I am not sure if it is going to be for one week or two. Doesn’t matter, I want her with me. What are we going to do when she goes? Maybe I can get some practice on the back of the bike. After all, the furthest I have gone has just been about 5 miles. This will also be the first time Jerry has been around me when I didn’t have the girls. What if we don’t get along? Hahahaha.

Thursday was a special treat for me. I got to meet Sharon from Dardanelle. The one who signs the guest book. Lisa Wells, her girls, Jerry, Cassie, and myself all went out together. It was wonderful to finally meet her. I would love to do that with so many of the great people who check in, but they don’t live just 10 miles away. We visited for about an hour. She crocheted a beautiful afghan for Cassie. The children were very good. And we got to meet her mother. She is a spitfire at 90. I would like to visit again in the future.

We took the bike out for a short ride last night. We stopped by and saw Christy and Randy. Then headed to her folks house. I had been so tired from the past couple nights dealing with Cassie's asthma and then being too tired to sleep. Needless to say, I crashed at 10:30pm and awoke at 8:30am. Sleeping that long is weird for me, but I feel good this morning.

We took Cassie to see Shrek 2 yesterday afternoon. It was funny. Not as good as the first, but at least still filled with adult humor.

Jerry and I have been dealing with some issues, not from my family or our friends. Without making this a forum or lashing out…instead I wanted to thank you all. For all of you Christians…look at yourselves. Do you do what Christ would have done? Many of you are bereaved parents, siblings, children, friends, or spouses, yet you come here to comfort when your heart bleeds. How many have set up other support sites to help others? How many now reach out to children in need. For the non-Christians, the same applies. The people who come here are good people. You post loving supportive comments. Visit others in the same boat. You wonderful people do what has been asked of us to do. That is one hand.

The other hand. Those who sit in judgment. They think they are above. Let’s learn some humility here. It does a soul good. They are too good to help a neighbor. They don’t even bother to send a sympathy card, not that I even care, I don’t, but it tore out Jerry’s heart and for that I hurt and am angry. That man became this child’s chosen parent, one of her caregivers, the one she chose to hold her during seizures. He loves her as his own. Yet he lived in sin because he moved in upstairs to help me care for Savannah, specifically at night. 3 to 4 times a night I would call out Jerry. He would be in my bedroom within 15 seconds helping me carry her to the bathroom, putting the tubing in the suction machine, checking the O2 tubes for kinks. But tending to a dying child is a sin? And God frowns upon the situation? Hello? These folks need to jump off a bridge. Please don’t breed. And for the sake of all children, don’t teach! That man lost his child. He grieves as a parent grieves. She is not in the grave 6 weeks and the crap starts showing up in his email. He is in mourning and evil under the guise of goodness begins to appear. I think most of us bereaved people are a more understanding bunch, BUT stupidity we no longer tolerate because we are no longer blind. BTW…you can find anything you want in the bible. Some pick and chose what seems to be relevant to them and disregard the rest. Are we sure this is the proper way to study the bible?

Tuesday, June 8, 2004 6:40 PM CDT

We are home. Uneventful flights. The very best kind to have. I recommend vacations. You can always find a cheap way to go on one. We grew up eating cans of tuna fish and cold pork and beans while driving through Spain. I feel good. Emotions real f'ed up, but basically good.

The bad...Savannah was not there. Except wasn't she? Isn't she in my heart? She now resides on my shoulder as well. But the mommy screams out in pain. I want her physically with me! But I watched her die. Lisa...remember...this was not the place for her...she became an infant physically...her mind remained intact. She knew what was happening. They know. I know these kids know deep down. Aggghhh!!!

The good...she has wings. She is no longer bound by a tumor that ultimately resists treatment. Would she come back here? Hell no! So I am happy. kind of. when i am not being selfish.

The great...I am surrounded by friends and family that love me. Look at the posts. Yes, I agree, I have been sent an angel. Savannah picked him out. Maybe it takes an angel to see one? If he reads this he will sh&^! My sister and her family sent Cassie and I on vacation. They provides a SUV for me. COOL!!!!!! As Cassie says...her future kids have been cheated out of an aunt. Look at what me aunt does for me. I love you Jeanette. The same goes for Les, Peyton, and Keaton. We all love you. Ha!!! We invaded their home, and I know how my sister hates inhome guests. Yet, she continues to open her home to me. For all reading...Do You do this?

We never made it to the water park, but we did get a bit of pool swimming in. Busch Gardens was great. Cassie became the roller coaster queen. She rode the two wooden ones, the scorpion, and the python. A couple more yrs, she will be one the EXTREME ones.

All the grandkids had their picture taken at the mall. I couldn't get one. Not yet. It was short one little redhead. But it was still wonderful. Gotta share somethiong funny. Across from the photo place was a goth type store. Yeah, I was right there. I am looking at the leather collars. My little brother walks in...laughs and says doesn't this bring back memories? Well, I won't freak anyone out and tell you what I got, but I will say...I did goth years before it had a name(20 yrs ago). Then I got to thinking of my life. Always morphing. Remaining the same but changing. I went from experimentation to clean but goth to hippy type to conservative professional to devoted wife and mother to advocate for my dying child to tatted up bereaved parent. Never really gave up my past...just expanded. Can't find myself? Naw...just expanding...taking in life. Ha! Lisa Wells will be calling me tomoroow wanting to know specifically what I bought. Girlfriend...it may scare you!!! Jerry agrees.

Last night Cassie starts coughing at 1am. I know this means asthma. I dope her up. I kept the meds coming. She made it through the flights. Then driving through Conway...the coughing starts again...the clearing of her throat. She is closing up fast. I dope her again. She is now wheezing. Driving through Morrilton, I tell Jerry to step on it. I give her another inhaler puff. The ones she had 15minutes prior did nothing. I was trying not to freak. Praying...of course. The hydroxyzine slowly started began to work. By our exit her peak flow meter was at the bottom level of normal. Thank God...no er visit at the moment. Then when we are home for an hour she calls daddy. What? You want to stay with daddy tonight? Of course I will let her go. I scream on the inside. NONONONONO. I can't function when either of my children were away from me when they were symtomatic. Dumn me let her go...but bet my sweet ### i am staying home by the phone tonight.

I want to stay on vacation! Do you go thru a running away mode during grief? I don't want to go back to work. I want to pack up Cassie and Jerry and go. Where? Who knows. Why don't I miss Savannah more? Why can I function? Why can I laugh and hold Cassie and not feel guilty? Why am I happy sometimes? Why don't I dream about her? Why don't I hear her voice? Why don't I feel her presence? Why? Why am I okay? Did I not love her enough?

Friday, June 4, 2004 8:45 PM CDT

What wonderful posts. Thank you. We are at Jeanette's house. We took Peyton with us to Orlando on Wed morning. We drove right to GKTW. Dropped off bags of toys and then got Cassie a stone. Check this out...the stone of my parents and my grandparents is right as you enter the front door...and in the center. Savannah's is right out front too but a little further down. I admit...I cried...several times...but NEVER around anybody there. I cannot steal the magic. That is too cruel. Tommy (my brother), Katie(my niece), and my parents showed up the following morning. Back we went to GKTW. I suppose you can see how this place has affected our family.

The hotel we stay at is Holiday Inn Family Suites. This is by design. The owner of this hotel began GKTW. Sea World was today. A very electric storm roled in so we headed back to Tampa a bit early. I have been wiped out nightly.

Hopefully, tomorrow we will hit a water park. We will see what the weather allows. Last year it poured every day we were here. I will check in later.

Please please pray for Michelle's family. She beat the beast on Monday and has herself a bright new set of angel wings. She had a great group of kids to welcome her.

I keep getting sad and starting to cry. Cassie and I were waiting in line at Sea World. I held back tears at least a half dozen times. Last two times we were here, I could do nothing because I had Savannah in a wheelchair. That sounds bad...I wouldn't have been anywhere else. It seemed wrong for me to be going on a ride. Jerry seemed to take over the rest of my job. In charge of the backpack, filled with drinks and snacks. I never had to carry anything. Even when I was married I had to carry all of Mark's stuff. This was like being a queen. It is so different. I will try to check in a couple days.

Monday, May 31, 2004 8:08 AM CDT

Memorial Day
Please everyone remember those who have gone before you. Those who have fought and died. This includes our angels who fought the beast within. Jerry already took an arrangement out to his cousins plot this morning. I have Savannah with me on the desk right now. Please check out http://www.catchanangel.com/memorialday.html
from Judy. What a beautiful tribute!!!

Please pray hard for Michelle. Her time is measured now in hours if not minutes. And for little Wyatt, who is fighting Wilms.

Please read the guestbook entry on bereaved parents from Tom, Robin, and Kirstine. It is awesome. I couldn't have said it better myself.

We leave today for LR. Then on to FL. We return next Tues. I will be away from a computer until Fri at least. I have a couple people who will watch my house and check on things for me.

I got an idea Fri night. We had several sticker packages unopened. Savannah favorite place in the whole wide world is Give Kids the World. Soooooo...all leftover unopened stickers, coloring books, toys still in boxes are travelling with us. I packed and repacked yesterday to get the most out of extra space. We are even taking an extra carry-on filled with stuff. I went into a quest like mode yesterday. Completely driven to make another child with a life threatening illness smile. We are planning on visiting the village on Wed. While I was being driven on this mission, I felt myself start slipping. I didn't know how I would react at GKTW. I no longer wanted to go. Hell I no longer wanted to go on vacation. I just wanted to go to bed. Welcome to depression. But I am not clinically depressed. I will live through this because this is event induced depression. I WILL go to the village because of my daughter. I am strong. and I am allowed to cry. I have had to do alot of things in my life that i didn't want to. by the time i get there, i will want to be no other place in the world. I will see her stone. I will see the other two their in her honor. Cassie will get one as well. I have collected a little more then half for it. We will make up the difference. I told Cassie, she may not be able to go out to eat a lot and no souveniers...but we WILL get a stone. We decided it will say...Cassie Hurley...Savannah's sissy...2004. I am taking Peyton with us. I have both the girls GKTW Panama Jack shirts packed for them to wear there. It was magic to ALL our family. When Cassie is older, I still plan on using my vacation to volunteer here, Cassie, too. We must give back. We must extend to others.

Sat Jerry went on a bike ride. Ooooppps. He forgot to come home. We missed mass. Cassie was very worried. I told her i would take her out to dinner. Where did she want to go? The Club. I want to play pool. Go figure. Off we went. She and I played a game (her second game ever) then she played a game with Dodie (the waitress). We left at 8pm. Jerry showed up around 9. Cassie was pissed. She is suffering seperation anxiety. She and I had a long talk that night. We determined because we had NO control for almost two years and lost a part of us, she is scared of more loss. Hence, the holding on. She was then angry at me. Don't you care? No, I don't (that is a lie, but if i admit that to myself, i would be pissed as well...i have a lot of deep anger inside and it is not fair to release it for something stupid, so i lie to myself). Why don't you care, you love him? owwwww. a question to myself, why do i downplay our relationship. hell, he was with my baby when she died, her request. savannah put this man in my life. I decided, i am scared of losing him. too much loss in my life over the past few years. take it slow, i tell myself. i CAN control this.

Have a wonderful week, i will check in. be sure to hit the links on the guestbook entries. leave a note of encouragement.

Friday, May 28, 2004 9:08 PM CDT

Cassie is home...cassie is home...cassie is home...I keep smiling at her. she and jerry were giggling earlier. he wanted to go for a ride and she asked him to stay. he did. they watched a movie on the disney channel together. i nixed the tv when it was over. i hate having it on. i think it takes away from family time. cassie got all my scarves out. she is designing clothing. the girlie 'thang'.

Jerry is going for a night ride...he has the itch. He is so cute...looking quite shaggy these days. I had always adored long hair on men. Maybe by the end of the summer he will be able to put it in a ponytail. Chris Kiel (christy, too) is thinking...yuck...i know, you like them clean shaven. he was, until i asked him to grow his hair long. and the beard, too. all grey. elaine thinks it will look bad. but remember, beauty is in the eyes of the beholder and i adore him. and cute little pixie jennifer. he scares her, jerry just laughs.

i had a hard week. it's a good thing cassie wasn't here. i was served as a witness in an annullment. that was so very hard for me. i wept. i got angry. i hurt. i never had a chance to heal from my divorce before savannah got sick. i had a lot of pain resurface. i know it was the right thing to do. but it still does not mean it doesn't hurt. well, i got through it, added my own thoughts, and had it signed off on last night. it put me in a dark depressing place on wed night.

Last night Fr. Charlie came to visit us. He is so refreshing. The three of us had a blast. I had noticed that when people are told someone is a 'man of the cloth', they change. They are not quite themselves. So after 'normal' theology based discussions, we kidnapped him for dinner. Told him he was friend Charlie. and off to the club we went. we laughed and talked...this is the first time since savannah's passing, remember we were all three with her, that we did not get sullen. maybe she brought three future great friends together. i asked rags to play something for me. of course, lisa. next song, Bring Me to Life. Out I went, by myself to swing my arms wildly, spin turn, drop, hold my shoulder, shed a private tear, and to hell with the world. except it didn't happen. i spun and actually opened my eyes. there was charlie, do you want to dance? We swing danced to Evanescence. Laugh. It was wonderful. savannah would always ask for that song. she thought Amy Lee was so pretty was so concerned that she died...the video. (i'll share that story in a moment) that is savannah's song, i am happy she loved it, but hurt because she no longer can hear it. it is the song for me to pour my heart out on the dance floor. what happened? the dance was transformed into a happy song. how can swing dancing not be happy. God's way of saying...don't visit the dark place tonight, cool!

Once at chemo...hooked up to the iv through the port implanted in her chest...we were channel surfing. the food network was on commercial. flipping by VH1 and the voice...STOP. I had never seen the video before. But she is walking on the ledge. I move the controller up to change the channel. Savannah can't watch this i am thinking. but she says no, i love her voice, you have this, she is so pretty. she asked to hear Bring Me To Life so often. Yeah, like i could never grow tired of accommodating that wish.

(i am listening to a homemade cd i was given for my birthday one year. I am smiling:)) Back to a good place. Cassie is home.

Little Feat is Sunday night. Cassie now doesn't want to go. Aaaaggghhh!!!!! Oh, rags played one of their songs yesterday for him also. it is nice to be a regular.

cassie likes her added space in the closet. i got rid of most of savannah's clothes. the dozen plus outfits i can't part with i moved. oh, her favorite shirt...Kim Possible, from Angel Kara...i still have it. It was the last one she wore. it is covered in her stomach bile. i can't even wash it. i just hold it. it is the closest thing i have to her. not her ashes, not her laundered clothing. her filthy shirt.

i wish i had time to email all of you. i regret that. i want to thank everyone for writing. i love the stories. sharing something of your family. angel parents do not hurt me at all by saying they have children in heaven.

i am listening to Hell of a Woman by Mac Davis. Both girls LOVE this song. they would belt it out. i bet jerry could relate this song to the little spitfire.

Wednesday, May 26, 2004 5:22 PM CDT

Whhhoooaaaa

I wasn't referring to me. I was referring to riannon at www.caringbridge.org/ca/jaydog and at maddie's and at jake's and at ashley's, and at leilani's. Sorry, it never crossed my mind about here. I just thought this morning, when I added to yesterdays post the evanescense connection was cool.

I like freaked when I got home and got on line.

Tuesday, May 25, 2004 7:54 PM CDT

Yeah, I have air in my house. It is finally NOT hot. Maybe this will help me sleep better at night.

Okay, this is kind of serious. I noticed it when I visited Riannon's site (ca/jaydog) today. Why have people stopped posting? When our kids are sick, then dying, then die the posts are overwhelming. We can't read them all. As things sl...ooww..ly go back to normal, the posts just about cease. THIS is when we need them. When we have slow time. when we aren't running. we have time to check, time to read, time to hurt. I know people check. I see the counter. When savannah went into hospice, there were 39,000 hits. Look where we are today. I never really looked before. Someone told me it goes up 1500-2000 per day.

What do you say? That is a hard one. But what do you tell a parent whose child will die? You don't want to sound like you have given up hope. You don't want to sound negative. But so many posted. So now, what do you say to a parent who has lost their child? My idea. Never forget. Talk about the one who is past. Let them live in memories. For those who physically knew her, post a memory. Bring tears of joy to this mommy's eyes. Share a story. Do you have a little one in girl or boy scouts? Did you hear a song that reminded you of Savannah, Jared, Celeste, or JakeyBear? Tell us. That won't hurt us. We will cry. But it is very very different. Tell us your kid has been puking. I remember when mine did. Even those are good to here. Life continues. We know this. We lived it also with our children. It puts us back to sweet memories.

Thank you to those who have continued. Oh, I'm still listening to JG. And I listened again to love songs from Celeste. She origionally made this for her mother. She shared it with me. I am honored you shared this with me. Diamond Rio holds a special place in my heart, for that song alone. Thanks to all that still follow savannah's story. For it has not ended. She lives in me, she lives in cassie, she lives in jerry, she lives in you all now, as well.

6:20 am Wed

What wonderful posts. I am listening to Evanesence right now. I couldn't do it for a while, but i did this morning. And then I checked the posts. The band should be proud that they have affected so many hearts out there. 'say goodnight, don't be afraid'. I am going to wear makeup today. Gotta do the girly stuff now. have a good day.

Monday, May 24, 2004 7:35 PM CDT

I know I updated this morning...but I had a minute...so i wanted to share the funeral mass.

Funeral Mass
My Beloved Savannah

Processional
"By My Side" - Godspell

Homily
Poems
Mommy's departing words

Offertory
"All Good Gifts" - Godspell

Communion
"Lord of the Dance"

Recessional
"Sing a New Song"

Officiating
Reverend Charles Thessing
Reverend Ernie Hardesty

The following are the lyrics to By My Side - Godspell

Where are you going?
Where are you going?
Will you take me with you?
For my hand is cold and needs warmth.
Where are you going?

Far beyond where the horizon lies
where the horizon lies
and the land sinks into mellow blueness
oh, please take me with you.

Let me skip the road with you.
I can dare myself.
I can dare myself.
I'll put a pebble in my shoe and watch me walk.
I can walk and walk.

I shall call the pebble dare.
We will walk together about walking,
dare shall be carried,
and when we both have had enough,
I will take him from my shoe, singing,
"Meet your new road."
Then I'll take your hand
finally glad
that you are here

by my side (by my side)
by my side (by my side)
by my side (that you are here)
by my side

Enough for now. I will write the poems and more lyrics later. This is very hard for me, but I hope to be very theraputic.

I haven't stopped listening to my new JG collection. Still awesome.

Monday, May 24, 2004 5:46 AM CDT

Friday nite we went to the club. It was a DJ weekend. I danced a lot with Jerry but not with the girls. He didn't play very much 'dance' music. Well, if you are going to venture away from the norm, best to do it on an OFF nite. Danced to the 8 minute version of Dixie Chicken, though.

I got home and broke down. I couldn't stop crying. I did finally dry up and watched home videos pre diagnosis. Jerry fell asleep. (it was 3am) Savannah had the sweetest little pipsqueak voice. She bounced around the camera screen. It was Christmas and then her birthday when she turned 5. That child was so excited about every present she got. Even clothes...look mommy, look, I got new clothes, look. Anyone who had been to her 6th birthday party knows this. She screamed at every gift. Of course the biggest difference was her weight. Slender little spitfire, agile. She had a freedom in her movements. So different what the steroids created...stripping her bones of calcium, increasing her body weight by 50% (hers was a small weight gain, compared to most kids), destroying muscle mass, then the mind, eiyeiyei... You search for your kid inside this unfamiliar frame. It is hard to find. You know it is there, but where? I got to see my baby predx again. I fell asleep watching.

Saturday I bottomed out. Everthing was in slow motion. I could barely function. I didn't talk. There was just nothing to say. I wondered if this is why people take happy pills? I was in a God awful place, but I had a right to be there...and I needed to go there...I did not and do not want to cover it up. I have to heal somehow. I think this is part of it. I will end back in this place many times. I just can't live in that place. Jerry kept saying he wanted to be there for me. Guess what, he bottomed out. So much for that. As I explained yesterday, it is not something we can do together. I went to bed at 9pm.

At 2am I woke. Got up at 3am and started cleaning. I have made more of a mess. I am working on the toy closet, the pantry (I have an enormous pantry), the girls clothes, getting clothes together for the trip, etc. I took a nap from 7-8am.

Things got better. I asked Jerry to take me for a ride. YES, I REALLY DID. I admit I was rather nervous. We went down the hill to Lake Dardanelle state park. Like a 2 mile ride. It was pretty cool. We visited the new visitor center there. We came home and then took the bike to Jennifer's. Now that was about a 4 mile ride. OOOOhhhhhh. I am getting to be seasoned. HA! The bike has been christened, the Savannah Hurley Harley. Anyway, we came home and get the mail from Saturday. Now this is WAY WAY cool...

Thank you thank you thank you M Elton for the collection. All my old DJ/ Deadhead friends would be SOOOO envious. I listened to 3 of the CDs last night. Danced on the front porch. I felt so good and peaceful after a couple nights and a day in the dark place. I will write more later. I have got to go to work.

Friday, May 21, 2004 4:27 PM CDT

School is out! Summer is here. Cassie is alone. I asked her this morning, on the way to the bus stop, if she still had a hard time on the bus without her sister. Yes. I miss her. I know she is in a better place and all, but I miss her. Did I ever tell you I used to hit her head into the bus window? Oops, I never told you. Yes Cassie, you did. You told me you were scared that you created her brain tumor because you did that when you were mad at her one day. And I said that was impossible. Oh right.

When I picked her up from the bus yesterday, Cassie began to talk about Savannah. This was a first in months. Mommy, someday it is going to hit me hard that my sister is gone. It hurts now a little but not REAL bad. It may be a year or two or ten, but someday her being gone will hit me. Think, my kids won’t have an aunt, like Aunt Jeanette. Who will send my kids to Florida? Then Jerry showed up. Wow! Cassie is thinking. She isn’t blindly dealing with this. She is also a brilliant little girl. (both girls were brilliant, yeah I’m biased)

On the smarts issue…also yesterday, in the car, I said something about Cassie being a dentist. Yuck, she said. I said you are smart enough for it, they make good money, and don’t have the crappy hours of doctors. NO, I am going to be a vet. Well, that is even better. Now, my dream for Savannah was neurosurgeon. Funny how things turned out. Never knew why that is what my minds eye chose for her. It was either that or stripper. She could have done well in both fields actually. She had the most natural…graceful moves. Moves of an erotic dancer. She would have been content to have a pole installed in the living room. I think she would have just known what to do. And she was four. Didn’t have a clue…never seen anyone dance like that (I was pretty careful on what the girls watched). This was innate. (It didn’t come from me though. I’d fall on my face) Just think, she could have taught me.

Remember (for those who have been here a while) Savannah taught me how to dance. I will remember until the day I day, that petit little redhead standing in the bathtub covered in bubbles. I had the music going and dancing a bit. She proclaims I am not doing it right. Move, move like this. Round and round those tiny hips go. Do it mommy. That’s better. Now move your shoulders like this. For ½ hr she worked on my moves. I thought I was humoring her. Don’t know how she kept warm only covered in bubbles. Those who have little girls can probably see this happening. After that, she takes me to the living room to dance. And we danced together ever since. I remember turning the girls on to Herb Albert. I crawled on my hands and knees to her, climbed up on the table and we whirled and gyrated. Took me a month to break her from dancing on the kitchen table. I hope all you mommies and daddies have fun like that with your kids. It makes my want to cry right now. It was so beautiful. THAT is what parenting is all about. Laughing, smiling, giggling, dancing, so wrapped up in each other and in having fun. To hell with the rest of the world…just you and your kids. For those who don’t do life like that…start now. My daughter is now dead, and ya know what? I have No regrets on her life. No thinking, I wish we did this, I wish we did that. The teaching me how to dance was prediagnosis. I still dance. I prefer to dance alone. My arms still swing. I don’t want to have to follow. I am in my own world. She is always with me. She is in my moves. She flows in my body.

That was Savannah. Cassie is a good dancer, too. Just very different. She has also been incorporated. Cassie does the sharper, Britney/hip hop moves and is great at it.

Here I am talking club dancing, and I am in the mood for Bluegrass. Oh, next weekend at Riverfest. Collective Soul is playing Sat nite and Little Feat (Jerry’s all time favorite band) on Sun nite.

Odd how thoughts flow. I have more happy memories to concentrate on. And you have a little view into the lives of the Hurley girls, completely happy and crazy. A few have also witnessed our joyous insanity. If they didn’t care for it, at least they kept their mouths shut.

About my angry update. When I started I was not angry at all. Then I got PISSED. Jerry said I pounded back three beers. I really don’t remember that as much as pounding keys. Then I was done. My anger was GONE when I hit enter. It vaporized. Reminded me of partying in college. Study until 10pm, go to a party and get smashed, get home by 1am, be up at 7am to start studying again.

Speaking of college…I got the COOLEST gift. Thank you Helen. I got such a rush. That was the sweetest thing. I keep showing everyone. Like they are remotely interested, but I don’t care. You did that for me. I am unaccustomed to that (except I am learning). Jerry and I are planning on being at Dana’s 4th of July party this year. If any of the old crew are going to be around. I saw a few there last year.

Jerry got his Harley tagged. I think he deserves a road trip.

Tuesday, May 18, 2004 7:05 PM CDT

i was trying to think of something profound to talk about today. however i am shallow at the moment.

a year ago i ran across a site. they had started a cancer sucks program. don't it though? dew rags rags were mentioned. at the time i couldn't get a bandana to stay in my hair. way to thick and long wavy red hair. well it's still short (donationation short growing out), and i wear bandanas alot. I have been searching for the site for about 2 months and found it. will i get lucky? chances are i won't...but still. I would LOVE to go to work (remember i am an engineer in a professional job) in a CANCER SUCKS dew rag with a sleeveless shirt on showing Savannah on my shoulder. I would love that. why? I love my daughter and CANCER DOES SUCK. it SUCKS so bad when our little ones are involved. The chemo they pump into a child will KILL an adult yet kids take it and thrive. SUCKS. can you possibly comprehend? being pricked ALL the time. Feeling like SHIT all the time, yet attending school and making A's. it SUCKS. i think i just flipped to angry mode. it's okay. i have a right. i have a God damned right. Do you hear me God? i have a right. you allowed this and i am pissed. my other daughter was stripped of a sister, a best friend, a life long bond. my daughter was put through hell on earth. does hell exist. yeah, it did. right here for a little 5yr old girl named savannah hurley. taken in her pure innocence. hadn't had time to f up like the rest of us. she never asked why me. WHAT...SHE NEVER ASKED WHY ME. unselfish. she NEVER questioned. do you know where this puts her in my book. she NEVER questioned. God definitely has been in short supply of innocence like this. Her death was NOT peaceful. It was not violent. well, f it, it was. it just could have been more violent. have you not been able to breath. gasping for air as your lungs filled with fluid. your face, hands, and feet turning blue? have you. IT SUCKS. I couldn't take it away. I COULD NOT TAKE IT AWAY. I failed in what parents should be able to do. IT SUCKS. I apologize every day to her. your children...children in GOOD homes feel not only feel unconditional love...they feel unconditional protection. i couldn't deliver. i am tired of failing in my life. i divorced. what bothers me is that I failed. i tried. i tried. I freak'n tried to make it work. and i still failed. my daughter died and i could not stop the beast. i really think i bought her time, quality time. i fought the devil for it. but i ultimately could not stop the beast. what else? what else? i haven't put my life back together and i can't stop thinking what else. poor Jerry, i downplay our relationship so much. why? am i scared of losing him too. well why the hell not. i cling to cassie. God help me not to be too overprotective of her.


This is Jerry,
Hell I am no person to look for answers, but I have been through Hell for the last 8 months and would not trade a single day of it. It has been the most crazy time as well as the happiest time of my 44 years. Who ever thinks that it takes a special person to do this they are very right. It takes someone who loves the child that is going through this Hell on earth. I asked many times, why me lord, and I finally gave up when I myself finally got it..
I was here because I was to learn from A 7 YEAR OLD HOW TO LOVE AND TO LOVE IN RETURN. That is why God put me in her and The Hurley Girls lives.
I miss her more than I would have imagined. I find it hard to spend time alone in the house. This troubles me.I am very comfortable around the girls, but I cant keep from remembering that little redheaded spitfire. The way she called my name and the way she would pull on my beard and hair.I can remember wishing when she became obsessive about her projects for her to want to do something other than that. Such as tickle time with Cassie and me. It's time for me to close for now. good bye to all and God bless all who read this.

Monday, May 17, 2004 6:14 PM CDT

I didn't have a breakdown at the club. The few people there that know came over and asked how I was. I said okay. Then I said, that is a lie. It is starting to really hurt. They hugged me. They take such good care of me. I did have to deal with a drunk guy who thought he was allowed to touch me. MISTAKE. This is why I prefer to dance with women. Many guys brave enough to get on the dance floor start assuming you want their body parts on you. I guess alcohol makes them brave. We came home very very early.

I bought a Harley on Saturday. I guess I had to do something crazy. My sister is sending us to Florida in a couple weeks. The only real plan is to visit Give Kids The World Village. I will scrap up what I can for another donation. That was the most magical place I have ever seen in my life. My sister and family just visited on Saturday to drop off some donations. They saw her paving stone.

I worked in the field today. Purposefully did not wear makeup. I figured 6+ hours in a truck by myself can lead to many tears. But still not there. My field work will keep me busy. Gotta keep the AR PSC happy.

I don't know where I am going. I don't know what I want. I in no way feel trapped. I am exhausted. As we all are here in the Hurley home. Don't freak. I am worried that I am not breaking down. Jerry is even worried. I can't imagine it is this easy. That is so wrong. I understand I have grieved tremendously for 18 months. You know, the fetal postion in the corner of the room when nobody is there. The sobbing so hard your body convulses. The screaming so long and hard, you feel your lungs ripping out. I feel that I should be back there now, and I don't know why I am not. Have I done all my grieving in advance? Is it still to soon? Have I prepared enough(like that is possible)? Am I that relieved? I'm just a bit confused, not overwhelmed by it (I still have to work and be a mommy and friend).

Saturday, May 15, 2004 7:35 PM CDT

I miss her. I miss her bad. I feel the tears. I want to be alone. I want to be in a dark closet. I want to crawl under the bed. I hold the box with her remains.

My beautiful baby. I miss her touch. Her cradling my face. Who mothered who? I almost lost it in mass this evening. I am so selfish. She is healed and I want her with me. I know heaven is wonderful. Our faith tells us that. But she was happy here with mommy, Cassie, and then Jerry. I didn't even have the energy to fold laundry. I just crawled on the bed. I wanted to sleep, but I couldn't.

Jerry is going to watch Cassie tonight. I am going dancing. Don't know how good of an idea this is. Well, my tears are no surprise at the club. They will make sure us girls are safe and left alone. I feel like this alot. I have always forced myself to go in the past and felt much better after the fact. We will see.

Thursday, May 13, 2004 5:54 PM CDT

Cont. 4-29-04 read previous journal entry first

Aspiration pnuemonia. I could hear it. Why did Mark leave? Oh well, no time to ponder that. It must have been absolutely excrusiating watching this transpire all day. But I never got a phone call that this had continued. It is easy to run from something uncomfortable. Did any of us really want to be there? HELL NO. But what was our choice, for those who stayed. I would not leave her side. Jerry refused to leave her side. I will get to Fr. Charlie later.

The gurgling continued to get worst. We had one nurse, Jinny, assigned only to us that night. She was a doll. I saw the suction machine on the wall. I asked the nurses if we could use it on her. We had been trained and did it frequently. Of course. Good. I have a little control. On a sweet note...the nurses all assumed Jerry was her daddy...the way he stroked her...always touching her...talking to her...constantly kissing her...trying to make her more comfortable. Those two love each other deeply.

At this point we all knew this was the end...her death was to be sometime the next day. I asked Jinny a guess progression and time. She told me the respirations will get further and further apart. They will get to 10/minute...then slow to about 6/minute. Maybe around 6am she will go. Her respirations we didn't count until much later. They were labored but regular. They were changing to a strong gasp then smaller gasps. The cycle only to repeat itself.

I had also called and left a message for Fr. Charlie before I left for the hospital. He called at 9:30pm and said he was coming. Fr. Ernie (my parish priest) arrived around 10pm. It was good to have him there. Fr. Charlie arrived just before 10:30pm. I made the comment, I am collecting priests. I know it wouldn't offend Charlie. I hope it didn't offend Fr. Ernie. The progression continued slowly. I was in bed with Savannah. I wanted to strip off my clothes and hers. It seemed so natural. Skin to skin, as it was in her beginning it shall be at her end. That is what I wanted, but nothing was turning out as I wanted. Can't get naked in a hospital if I'm not the patient and surely not with two priests in the room with us. At some point in time Fr. Ernie left. So the three remain.

Fr. Charlie...I can write volumes on this man. He has touched my heart and soul the way very few people have ever done. Get your mind out of the gutter. Although he is a very attractive man. Okay...it was so obvious to me...this man is so very uncomfortable, scared actually. Yet he stayed. He didn't have to. I never expected him to. He loved and adored Savannah as she did him. He did not know what to expect, but he stood at the plate accepting whatever was going to transpire. He never spoke of fear. I could sense it. I have become very tuned in over the last several months. He may or may not admit it, but I would never ask him to. Now, to me, THAT IS A MAN. A man that deserves the utmost respect. This is a man of God. He may feel he fails in so many ways, but not to any of us. His sense of humor kept us going...sharing Savannah stories...discussing our faith and other faiths.

I had Charlie time her respirations. They were slowing quite a bit. 16/minute...still a way to go. I had no anger, no frustration, only a job as a mother to my precious child. The time to turn her over to the angels was approaching. The journey was coming to a close. I always thought I wanted to be alone with her, maybe a hospice nurse. But that was changing. I wanted her at home. period. This was me...my wishes. Fate was now in place and I had to turn myself over to it completely. God was in control. I had prayed and prayed and prayed to God, Jesus, Mary, the saints in heaven...do what is best for Savannah. Well, was I wrong! My ideas would have been a horrible death at home. She was put where she needed to be. God provided angels to guide individuals into place...to keep other individuals away...as she slipped her hand into the hand of an angel. I was comfortable. F'd up, ain't it. I feel like crying now. It was 11:30pm. Her cheeks were turning blue. Her little slim pianist hands were blue. Her kissy feet were a shade of blue. Little oxygen was getting in her lungs. The back of her neck was on fire. This is where the lemon size tumor has shot down her brain stem. It is literally inflamed. This parasite called cancer is trying desperately to remain alive while killing its host. (best way I can describe it)

Around 20 minutes later, Savannah respirations increased a bit. She began making her little Savannah sounds. These are little sounds she made when she snuggled in tight to you. Sounds of complete comfort. Except I was alarmed. I got out of the bed. Jerry and Fr. Charlie remained. I went to look for Jinny. Didn't see her but a nurse saw me. I thought I was being stupid. Something was happening. A nurse did come in a minute later to check. Right then she needed a bit more suctioning, not much. Her repirations picked up a bit.

4-30-04
12:07am Savannah took a breath and no more. I noticed IMMEDIATELY. I cradled her head in my hand, put my face to hers, and said...baby...you don't have to breath anymore...Savannah listen to me...you can go now...you can stop breathing now. At the same time, I hear Charlie behind me...I think she stopped breathing...should we get someone. Jerry said, no it is okay. Then she breathed. Okay, call Jinny. Savannah stopped again. Oh baby, please don't breath for me. It is okay to go. Mommy loves you. Jinny walks in. A gasp. She goes to her. Nothing more.

She gets out her stethescope. Asks Charlie for the time
12:10am. She listens.

Her heart has stopped, she says. You will see some (something breathing-forgot what it is called). But she is gone.

Wednesday, May 12, 2004 7:50 PM CDT

Maddy lost her battle with the same beast on Friday. I checked her site this morning. I have been so behind the last couple months. She was doing so well. I think I was in shock today.

4-29-04
Mark was with Savannah in the hospital. Jerry and I actually went to work. Cassie was at school. Jerry was going to relieve Mark. I was going to do Cassie time until 8:30. We were to swap and I stay with Savannah. Savannah was unresponsive and Cassie needed me...BAD. Jerry gets to the hospital early and calls. Mark said to call the pediatrician on his cell phone. that is bad. she had been vomitting all day. respitory had been suctioning her all day. WHAT??? dr says...any in her lungs, highly probable...asperation pnuemonia. nothing we can do...rocky night. he was so wonderful and caring and honest, as he should have been.

i call hospice and ask for elaine. i didn't care if she was working or not. it had to be elaine. she tells me things to pack. in case. i was already on it. time was crawling, but it flew by. had to get to my baby. had to prepare for my baby's flight. no regrets i wanted, remember? cassie went with lisa. mark left the hospital after jerry got there. lisa picked up cassie. take her to the hospital, please lisa, for a final goodbye. and a final question to cassie. honey when it is over, do you want to come say goodbye one last time? yes. then go baby, i love you with all my heart. lisa, you too.

i arrived. respitory was cleaning out her throat and mouth again. i just missed what was her final vomitting episode. jerry said is was a miracle that i was kept from seeing the nurses dig down her throat to suction. not in the lungs, but more than what we were doing at home. i could hear the raspy breathing. F F F F F. My worst fear (okay second to seizures). I was going to have to live it. Face a childhood fear of suffication. and i was going to have to live it with my daughter. she was going to lose before morning.

norine's phone number at home. couldn't leave. crap. forgot her unicorn. sorry baby. so sorry. can't stop it, baby. i love you so much. my heart is bleeding. i have tried so hard to change places with you. no one will let me. i am so sorry you have to live and die this way. i am so sorry. you are beautiful. you are my life, my breath, my essence. you are my soul, my hope, my tears, my joy. you are my laughter, my kisses, my daughter, my baby. i love you more than i can ever put into words. you make my so proud. the proudest mommy in the world. so proud and honored you call my mommy.

more on another post. my typing is keeping cassie awake.

Tuesday, May 11, 2004 11:41 PM CDT

Carol called me. Sydney earned her wings this morning. Damn, I was just telling Norine (angel Ashley's mom) last night that she is just a week or two behind Savannah. I have to call her tomorrow nght. I failed. Life got in the way. Cassie was in to the dr today. beginings of an ulcer and jerry has emptying out from both ends. I just never got the chance. i am so sorry.

Sweet Sydney may finally break me down. This may not be a bad thing. How can I go to work tomorrow. My babies. My children. Their mothers. You bond with certain individuals who have gone through and are going through the same thing. A sisterhood beyond comprehension. I have read Tami's (Celeste's moms') letters to me several times today. We are entangled in eachothers souls by our experiences. This is a strength even though all of us probably want to fall into a cave.

Sydney went in her sleep. How beautiful. The ending...sucks. Still can't say lungs filling with fluid is peaceful. She slipped away while mommy slept. Sneaky little sh&*. Jared did that. I really thought Savannah would do that (except I couldn't sleep). Ever since I read that Rachel did that...I wondered if Savannah would do that.

I talked with Carol over 1 1/2 hrs. It was good. We have always talked openly about our girls upcoming deaths. Never knew they would be so close. It was a sanctuary, where no one questioned us giving up hope because we discussed death. Where we could talk about our daughters buried deep inside the monsters their bodies and minds had become. Where we could honestly talk about what got us through.

I hurt. The beast called...pontine glioma is a...is a...I can't even find a word vile enough to describe it. Awww s^&%...THE MOST DREADED OF ALL PEDIATRIC CANCERS...FOR THERE IS NO CURE...ALL TREATMENT IS PALLIATIVE. It just sucks a big one. What and who will I be tomorrow? Angry? Devestated? Sad?

Mark if fine, for all those interested. Quite a few are. This is good.I just hope he can feel the power of prayer.

I need to go to sleep.

Saturday, May 8, 2004 3:09 PM CDT

Cassie had fun at May Fest. Every grade at the school puts on something different for a fund raiser. One does bingo, one sells pizza, one does a toy sale, another a raffle, etc. We picked her up from the bus stop at 1pm. We took Savannah's new kitchen center from Christmas over to the daycare. She would have liked that.

I put away 5 rolls of film from the last month. Then I picked up 4 more rolls from the hospital and funeral. Looking at that peaceful child in the casket was comforting. A friend of mine's child died a few years ago. She took pictures of her son. People told her she was sick and crazy. I asked to see them. Well, I think it is beautiful. And f em. Those people don't have a clue and are not worth my time. I think it is evil to forget the dead. They are part of our individual being. I know I will run across several who are scared by this. That's okay. Their loss. I know I will be hurt by this. New walls will be erected. But I will not stop talking about Savannah. I will never stop being her mother.

Jerry pulled all the shrubs out from under 1/2 of my front porch. I filled several vases with cut flowers. I plan on taking the silks and doing the same. I am still doing laundry.

I finally got out of bed this morning (afternoon) at 1pm. I dosed and dreamed since about 8am. I wasn't depressed, I just was tired. Now I feel hung over from too much sleep. And I am having problems getting motivated. I promised myself, I won't kick my self over my laziness today.

Tomorrow is Mother's Day. It will be different. Every year I would get all kinds of hand prints, drawings, cards, etc. given to me with ear to ear grins filled with the intense love only a child can have. Even Cassie has been so busy, I know she hasn't prepared anything. I hope she doesn't get sad. I know her, and she will be heartbroken thinking she has somehow failed me. I think I am going to ask her to help write thank you cards. We can be together, doing something meaningful, and it will have Savannah included.

I had written M Elton a thank you card and forgot to mail it. It sat there for a week. Savannah did take the stickers off the page and help put them on. That may have been the last card she could do. She would have loved decorating the thank you cards. I may ask Cassie to put stickers on them in honor of her.

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Memorials can be made in Savannah's honor to

Caringbridge (you are here)
Make A Child Smile (www.makeachildsmile.com)
Give Kids The World (www.gktw.com)
Make A Wish (your local chapter)

Thursday, May 6, 2004 6:42 PM CDT

Everyone is gone. Cassie wanted to go to a special reading party at school today, so Jerry and I took her. May fest is also tomorrow at school, and she wants to go. That is fine. Jerry and I will take off one more day. The house is entirely trashed. Today he planted a tree and plants outside. I did laundry. My home is covered in plants and flowers. So much to do. I have to prepare one of Savannah's famous LISTS.

I have so much to say. I will continue to write. I want to talk about the funeral, the friends and family, Cassie, Jerry, me, the past, the present, and the future. This has become my therapy. It got me through the hardest thing I have ever had to do in my life. My blue eyed redheaded spitfire is no longer with us, but she is forever here.

I picked up her remains yesterday along with all the plants and flowers. It was so fast. The box just sits there. I don't know how to open it up. Do I want to? I promised her she will always be with me. She had no idea how far I was willing to take this. Her remains will be with me when I am put to rest. She went with a quilt my mother spent a year on for her (yes, true quilting), a pink rosary made of hearts Lisa Carruth gave her for Christmas, a necklace from Andrea Bean, and the horse painting she asked Jerry to paint for her, all blessed by Father Charlie.

After the funeral and luncheon at the KC hall we all went home to Russellville. I wanted a party. I wanted laughter. We already had tears and we will have many again. But then I wanted laughter and 'I remember whens'. It went very good. Until my brother decides to go to the club and take Jerry with him at 10:30pm. We had to leave at 9am for the airport the next morning. Jerry said he would be back at midnight. Yeah, right...you don't know my brother. The shit went out of control. I was not mad...I swear it. Jerry thought I was (5 shots of whiskey and several beers made this man lose his senses). My brother is my brother. I love him, but the child (man) has no common sense. Now Jerry is mad at me because he thinks I am mad at him. My brother is following me around like a puppy dog...am I ruining your life? AAAGGGHHH!!! Go go away both of you, I am fine. GO, we are still leaving at 9am...know this and go...I am fine. Mind you, I don't get mad easily. And people have asked me why as a redhead I do not have a firey temper...but I don't. I told Tommy...worst case scenerio...Jerry leaves...Cassie and I will be fine. He won't leave though, so don't worry. I have lived for years with real abuse. This was laughable. I actually was laughing. It got so out of hand it was funny. I was mean to Jerry though. I admit it. It was cold and calculated. I was getting tired of stupidity. I told him if he wanted to leave that was fine. His obligation was over. I never meant to control you or even give you that impression. You are free. Well, so much for that. He didn't even remember that the next morning. I was so sickened that I told him something so mean, I cried in Eric's arms for about 1/2 hour. (Eric is my best friend from college). I still realized this was way too much stress...way too much lack of sleep...a bit too much alcohol(I have seen so much worse, I can't even say this was due to too much). I put Jerry to bed. I slept on the floor covered in Savannah's things and cried myself to sleep.

-----------------------------------------------------------
Memorials can be made in Savannah's honor to

Caringbridge (you are here)
Make A Child Smile (www.makeachildsmile.com)
Give Kids The World (www.gktw.com)
Make A Wish (your local chapter)

Tuesday, May 4, 2004 5:56 AM CDT

The visitation was wonderful. Savannah was so beautiful. I took a roll of film and we videotaped it. The balloon release was wonderful. It finally thinned out around 9pm. Jerry, myself, and Father Charlie again had some alone time with her. I think the three of us are bonded through what we went through last Thursday night.

I need extra prayers for Cassie. And Mark. His defibrilator shocked him five times outside the church. He had to be taken to the hospital. He had to miss Savannah's visitation. We thought he would be at the funeral today, but I have since found out he was taken to Little Rock. I know no details other then I was with him when he was shocked twice. This is very real. I got him off the pavement. Vicki never left his side.

Cassie saw also (at least once). She is sitting in church with me. During the children's visitation she starts getting very very worried about her father. She is looking at her sister laying in her casket. Her father was just taken by ambulance to the ER. She has never seen him shocked (I am an old hand at this). Cassie didn't want to stay for the regular visitation. That was okay. She had way too much to deal with. Please pray for her. And remember to pray for her father who will miss his daughter's wake and funeral.

Oh, I was fine. I never broke down. I was NOT trying to be strong. I held and talked to Savannah. She and I did good. I hope in the last 18 month I have honored her. I know I was honored to be called mommy. I did have Jerry pack a small cooler of beer. My sister asked if we were going to have a tailgate party in the church parking lot. Yeah, just in case. But you have to understand, I have always refused any helpers from the dr. Well, I never even needed it. This is not to say I did not partake later. I planned a party at my house. However, I was too tired and went to bed.

The arrangements are as follows...

Wake/Visitation
Sacred Heart Catholic Church in Morrilton, AR
Monday 6pm Children's visitation
Monday 7pm Adult visitation

Funeral Mass
Tuesday 2pm Sacred Heart

arrangements have been made through Humphrey funeral home in Russellville, AR

Memorials can be made in Savannah's honor to

Caringbridge (you are here)
Make A Child Smile (www.makeachildsmile.com)
Give Kids The World (www.gktw.com)
Make A Wish (your local chapter)

Saturday, May 1, 2004 2:43 PM CDT

The arrangements are as follows...

Wake/Visitation
Sacred Heart Catholic Church in Morrilton, AR
Monday 6pm Children's visitation
Monday 7pm Adult visitation

Funeral Mass
Tuesday 2pm Sacred Heart

arrangements have been made through Humphrey funeral home in Russellville, AR

Memorials can be made in Savannah's honor to

Caringbridge (you are here)
Make A Child Smile (www.makeachildsmile.com)
Give Kids The World (www.gktw.com)
Make A Wish (your local chapter)

Cassie is fine. She has been with Lisa Wells and her kids the last two nights. She just came home and now has gone to her fathers. I still have a lot of work to do and her daddy wants to take her on a four wheeler ride. She also needs to try on a dress over there for the funeral mass. Cassie has not been clingy at all. She hasn't hid. She didn't act out.

Jerry looks rough. He functions fine even though he is emotionally and physically exhausted. He does whatever anyone asks him to do.

Me...I am okay. I am relieved it is over. I would have gladly taken more days. However, it was time. I was given quality time and lots of it. I am busy. Have a ton to do. Family and friends have started to arrive, along with tons of food from local friends and neighbors. That will help tremendously with all the people who will be here with us. Now I need to lay down. I have 45 minutes before another appointment. I need a nap.

Thursday, April 29, 2004 9:53 PM CDT

I tried...I really tried to post this morning when we returned from the hospital, alone. We read the most beautiful post/tribute. Jerry and i cried and cried at Lisa's post.

Savannah earned her wings at 12:10am on April 30th. She surpassed 18 months since her dx was 10-29-02. She became one of the 30hat makes it past 18 months. A long term survivor.

At the time of Savannah's last breath...she was being touched by mommy, Jerry, and Father Charlie. No seizures, but I want to stay away from the...It was peaceful. Watching and holding your daughter as her lungs fill with fluid...knowing there is NOTHING you can do...knowing this is the gentlest method to trangression to the next plane. It is freak'n hard. I will go into more detail later. I think it is important. But now I have no time. I must sleep. I have much to do tomorrow. Love to you all. My first night without my youngest.



Lisa has asked me to post to let you all know that Savannah is preparing for her special journey Home, her wings are almost ready to make their first flight.

Her pediatrician is keeping her in the hospital as he has consulted with the family and feels that it is best as the time is near. Lisa and Jerry are with her there, as I am sure are God’s angels. I would bet too that many of the special people that have touched this family’s life, like Ashley and Jay Dog and Jakey Bear, Lelani and Pam and the many, many others that I could list on here are standing by to take her hand and carry her first to our Maker for a proper welcoming, then to on to eternal bliss. She is slowly leaving this earth to return to a place where she will not suffer but will fill the place that has been specially prepared for her.

Lisa’s loving prayer for a peaceful passing is in the process. Savannah, with round, rosy cheeks and soft red silky hair has many people lovingly tending to her. It appears she will sleep her way right into Glory, probably before morning – in God’s time. The family and Hospice will be there. Cassie has spoken her last earthly good-bye to her sister, as mentally prepared as a 9-year old can be. Cassie is with us and will return to her Mom as soon as it is time.

Please remember them all tonight, tomorrow, two days, two weeks, two years, an eternity from now. God has so many important things planned for Lisa and this special family. We must all stand firm and support them.

We love you Savannah, what a beautiful angel you will be – please watch over your sister and mother for us all. What a blessing you have truly been,

Lisa Wells

Thursday, April 29, 2004 12:56 AM CDT

The saga continues…

This morning savannah began vomiting when her pediatrician was present…she is still unresponsive and in the hospital. He had respitory come suction her. Mark said she was breathing much better after all the gunk was out. The dr checked her over real well. Sinus infection. One more day in the hospital. Antibiotics through the IV. The IV is a definite now instead of a possibility. She has vomited a couple times now.

The foley came out. When she vomited she also urinated a bit and had a bowel movement. It may have been from the stress of the vomiting. They put another foley in and got out 100-200 ml of urine. The dr only wants it in while she is in the hospital. He is afraid she may become septic. We will have to catheterize her 3-5 times a day at home. Hospice will probably teach us how to do that.

The hospital didn’t give her steroids last night. She is on 4mg/day of dexamethasone. For those that know about steroids, you know this is serious.

Thanks for the cd, Celeste. I love the Diamond Rio song. It is very special to me for another reason. But so many songs have dual purposes in my life now. I have had too many deep loses within the last couple years. ‘leave me wishing still for one more day with you’. Beautiful for my little girl.

I will stay with savannah tonight. I think will stay with cassie until bedtime and have jerry take her home. Cassie still NEEDS mommy real bad right now. Savannah is at peace and unresponsive. She doesn’t NEED me with her 24/7 while she sleeps. Me being with savannah is for ME right now. BUT I have another child who after 18 months is just now starting to show signs of stress. I must concentrate on sweet Cassie when I can. Someday, Lisa will have time for Lisa…but not right now. And Jerry…Jerry hurts so bad. Fights not to leave her side. I worry about him. He doesn’t even ask if she needs to be suctioned, he just does it. He empties the foley. He holds her while she seizes (I have to get meds and be on the phone with hospice). He who is of no blood relationship has taken a pure caregiver role with more love than I have ever seen. He is scared, he aches deep for his little love, he embraces Cassie with gentleness yet firmness. I hurt for him. I know he misses the wind in his hair. He has no release. He never complains. He says this is where he needs to be. Thanks for all the positive words of support for him. He doesn’t read them unless I point them out. He never reads the site. He says it is my private writing…he lives it day by day and side by side. It is pretty obvious to me; he is very embarrassed by it but keep it coming.

My Explorer is screwing up AGAIN. I am going to look for a new vehicle today. I have no time to waste on repairs or chance a major problem on the interstate with Cassie while Savannah is in hospice or the hospital. I have never NOT researched a vehicle and now I have no time.

If something drastic happens, I will post. If not I will be at the hospital tonight and tomorrow. So do not panic.

Wednesday, April 28, 2004 8:02 AM CDT

Right after I posted, we went to bed. Savannah was peaceful. I asked Jerry if he would like to hold her tonight. I will hold Cassie. He said that would be wonderful, thank you. 5 minutes later, he says, she is awake. We looked at her, she looked at us, she started seizing. I jumped, got the larazapan, put on Spirit of the Cimmiron (her favorite movie). She wouldn't slow down. Called hospice, another dose. Do you want me to come. Even though I figured the extra dose would work, something told me to tell her yes. Elaine from hospice was on her way. Savannah's breathing becomes labored. I get the O2. I wake Cassie and take her upstairs to bed. Susan comes downstairs with us. Savannah stops breathing. She didn't breath for close to a minute. Her body wanted to breath, but forgot how. Her eyes, her jaw, her arm, her leg. everything was seizing. Elaine arrived. She said, we have got to control the seizures. ER, I asked. It is fine with hospice, to treat.

The nurses met us at the hospital door. Wooshed us in and pounced on her. It redeemed my faith in St. Mary's ER. The dr stayed in the room will the meds were administered. The gave her more larazapam. NOTHING. Her heart rate over 200. They gave her an anticonvulsing drug. A derivitive of dilantin, more pediatric friendly. They slowed. It took 45 minutes to stop. We need to admit her. Do you want her here or at Childrens in LR? Talk it over with her father (Jerry). I have to call her daddy. Oh, sorry. I called and talked to Vickie. No mention of them coming in. Just a thanks for calling. I was in shock. Why should this shock me? Nothing should shock me, but it did. Came in. Nurse says, he on his way? No, just a thanks for the call. A few words were spoken about that (and not from me...remember, I don't have to...behavior speaks). I wanted her to be in Russellville, so her pediatrician can take care of her. They called him at home. Got in a room. The nurses upstairs got Jerry and I all settled in. At 4am we were alone. This was not what I wanted...BUT it was what was needed for Savannah. Her death does not have to be violent. Jerry slept for 1/2 hr before he had to get up and get Cassie to take her to school. I slept for 1 1/2 hours.

Mark shows up at 8:30 for a few minutes. He says he and Vickie will stay with her that night. Cassie is breaking down, and I need to spend time with her. This is a good thing.

Now Cassie. Was angry 2 nights ago and wanted to cry. She said, I don't know why I am so angry...I can't stop...i am so angry i want to cry...it has nothing to do with savannah. i am just so mad. then yesterday morning, susan wakes her. where is mommy? where is Jerry? she loses it again. we are at the hospital. she has no recollection of our conversation when savannah was seizing. we would have a special night with just cassie.

i was so tired last night, but adrenaline surging. we had a picnic, and watched 'good boy'. and of course, i missed most of it. phone calls...visitors. but i did hold her for a while. jerry was sent to bed. he looked more ragged then i have ever seen him. susan is staying one more day. savannah will be released today. susan will take cassie out for a special night tonight. susan is savannah's 'pesonal assistant', now cassie will get a bit of attention from her. this is a wonderful gift she is doing for us. cassie lit up when she found out she was staying one more day.

i couldn't get up this morning. the middle of my head hurt so bad. exhaustion. i walked in the kitchen...all cassie's meds were laid out for her. jerry did that, so cute. he said go back to bed. he took her to the school bus. he couldn't stay away from savannah, he had to check on her. mark says, we have to leave and go to work. where is lisa? she is asleep. what was jerry to say? they left. Jerry is not her father. Jerry does not get paid if he doesn't work. Jerry could lose his job due to not being regular(I doubt this will happen). Jerry doesn't care about that. All he cares about is that little girl. so daddy again abandoned his daughter. she is an inconvenience. that is venting. but now just facts. jerry wants me to drop this. at least she has someone who loves her here. that speaks, doesn't it?

Cassie tells jerry in the car last night...you are a better daddy then my daddy. that really bothered him. what a shame she has to say something like that. out of the mouths of babes. Cassie LOVES dolphins.

mark is supposed to keep savannah 2 days this week. i thought at the hospital would be safe for him. what, he wants her at home? jerry doesn't want me to ask him if he is going to do this. he struggles to share her with her bio dad. he manages this well.

now for venting...i leave the hospital at 7pm to go take care of my other daughter who is breaking down. just 2 hours i have prior to bedtime. working on virtually no sleep. only to be expected to relieve 'the babysitter' at 7 am so he can go to work, even though he was going to watch her a couple days this week. i am struggling. thank God I have a village around me that supports me. jerry says, you can run but it will ALWAYS catch up to you. i used to pray that he wouldn't have to live with the guilt. i stop that today. we can only live our own lives.

Cool stuff happened yesterday. Lisa Wells stopped by the hospital with bags of goodies. We had a great time. Laughing and giggling. Jennifer stopped by. More laughing and giggling. A nurse came in. In our conversation, she says, do you have a website. yeah. are you the one with the tattoo? uh, yeah, i do. cassie then says, show her...show her the other one too. show her. way too funny. susan says that was one minute of my fifteen minutes of fame. i reached celebrity status. more laugher. Randy stopped by. He works there. susan thinks he is cute. he is a doll. he has asshole charm. Got home and Christy is here (Randy and Christy are married for those who don't know). Lots of hospice people came to the hospital. all full of compassion. and lastly. lisa carruth stopped by last night. lights are off. she knocks lightly at the door. i send susan to answer it. nobody is here...i didn't see lights or hear a knock...shady isn't barking. she walks out, runs back in the bedrood screaming, jumping up and down, hands in the air. there is a body form there. i thought she was joking around (but she wasn't...if she would have peed her pants i would have known this). i told her to answer the door. lisa tells her while laughing, you spaz good.

Savannah will stay one more night in the hospital at least. potassium is low. update later. i can finally go to the hospital.

Monday, April 26, 2004 10:24 PM CDT

The fear mounts. She woke up at 5am. I laid in bed with her until 5:30am. She wanted to go to her recliner. Her right leg was cold. That is the one paralyzed. I rubbed it for a couple minutes. She fell back asleep. Jerry went to work. I got Cassie ready for school. Susan got up, and I went to work. Savannah hasn’t woke back up. Her tubing for her catheter was very gritty and had a lot of sedimentation. But by the time Tami (the hospice aid) came, it had changed to like a curdled milk sedimentation. Both legs below the knee are now cool and mottled. The hospice nurse said we are keeping her legs covered and the house was comfortable. They changed the tubing in her catheter. Her urine is clear again. She had her bath and is sleeping on the sofa. Her lungs are clear, but she is gurlgly…a throat thing. She opens her eyes, looks, and goes back to sleep.

She still sleeps. She drank a couple swallows when daddy came over. Lisa C. visited tonight. The girls went to bed. We visited with a few beers. Not drunk...just very social (remember I am German/Irish and a Catholic). I had such a good good time. I laughed harder than I had in months. Savannah would be happy for us. She really would. Mommy smiled. It is peaceful. Death approaches. God is granting me my prayer. Peaceful sleep, not pain. Thank you, my Lord. I think of the Evanescence song, Imaginary. Are you there, baby? Your field of paper flowers? Candy clouds? I love you, baby.

Sunday, April 25, 2004 3:39 PM CDT

Savannah comes home in an hour. Mark says she has been moaning alot. I want mommy. I can't wait to have her home. Jerry can't wait to have her home. Susan, my cousin just arrived again. She will stay for a couple of days to help out.

We had a relaxing evening. Didn't go anywhere. I was so tired. I wokeup at 4:30am. Guess Savannah has me so used to that time. Got up at 7:30am. Got my work out. Went back to bed. Slept. Finally got my tushy out of bed after 9am. Then took anouther 1/2 nap later. I think this lack of and interupted sleep caught up to me.

I've been working today. Haven't got done what I wanted to get done. Still have tons of laundry to put away. Lot of clutter to put away. Not enough time. I'll check in tomorrow.

Saturday, April 24, 2004 6:12 AM CDT

i know i just posted last night...but here i go again.

i asked jerry to take me out to the club last night. i really really didn't want to go. but i know myself. i needed a break. i always feel a little better afterwords. savannah was sleeping deeply. dad had arrived, so we went at 9:15pm. (this was a truly last minute thing)

the band was good (except they played a lot of country). when the dj played evanescence for me i took my hair down. it is finally getting long enough that i can feel it on my shoulders and neck. i really miss my long hair. but it went to a very good cause. it will be long again and donated. i will just continue the cycle. laura showed up, so we got to dance together. i just had one beer there. i could not drink. i felt so quesy. jerry even asked for chips, which i ate. but it didn't help. we left at 11:30pm, so early. i couldn't keep my eyes open, and i felt like i was going to heave. you know how you feel when you drank too much? the puking stage? that's how i felt, except no alcohol was involved. nothing was involved. i layed down for the trip home. jerry says the stress is catching up to me. i know he is right. everytime the girls go to mark's, savannah seems to come home a step backward. they go to daddy's today. yeah, i am scared. but i told him, i am always scared.

5:09am the princess wakes. 'i'm hungry...i want to get up.' i heated up cream of chicken soup, jerry fed her. she just said she was tired. jerry layed her down on the sofa. we watched her 'great performance'...her spring 2002 performance from Caughman's corner preschool. that child stole the show. she loved the mic and used it. she danced. she never stopped moving that petit little body. she never stopped that ear to ear radiant smile. she was born to be centerstage. actually, she was born to do many things. unrealized. at least she had her 'great performance'.


for those who wanted the address posted again...
P.O. Box 144
Russellville, AR 72811

FYI...I heard the next evanescence song will be Everybody's Fool. Haven't heard it yet on the radio...but it's not like i have much time.

Friday, April 23, 2004 6:56 PM CDT

Cassie was home with us last night...finally. It was so good to have both my girls under my wings. No school today. Prom.

Savannah woke at 4:15 am. She said, i want to get up. so i put her in her recliner and layed down next to her. she was thirsty. then she was hungry. she ate cream of chicken soup. jerry went to work at 6am (low water bridge wasn't covered- he is sore from carrying trusses today). she had difficulty talking. i think some of it is also formulating what she wants to say. i went to work. i did field work for about 2 hours, so i have work to do from the house. i got home at noon. mom said she had a good morning but was getting tired. she seemed to be going downhill from then. she fell asleep at 4pm. she had been fighting it so much. mom finally got her to lay down. she absolutely refuses that with me.

she still sleeps. my head is a mess right now. it feels like i took a bunch of meds. but i didn't. it is stress. my sinus problems did progress to my chest today, though. i have antibiotics to add now.

good night.

Thursday, April 22, 2004 8:55 PM CDT

Savannah is drinking. She even graduated to milk. And check this out...mommy i'm hungry. i told her she has to be able to swallow before she can eat. damn steroids. damn damn damn steroids. jerry fixed her cream of chicken soup. she ate it. and on top of all that. she was picky. didn't want pureed food ie. baby food or even apple sauce. I'm sure she really wanted bratwurst (especially the kind they make for anheiser busch's Grant's Farm...which I have especially for her). at night you can tell the steroids have run their course. she gets 'out of it'. don't think i would want to give her anything to eat or drink at night.

to Lauran...i am so very proud of you. Savannah's two chemo angels have given her more joy and desire to press on then any other thing that has happened. not to say the others weren't important. to this day we have never spoken but i truly believe they are better poeple then I am. I love you Lori and Kara. and Kara and Lori. One is no less than the other. They have gotten us thru. It is such a committment. I can envision God cradling his hand on their faces and saying, Well Done.

to Katie... you just missed them...March 2nd Cassie and March 9th Savannah (2yrs 1 week apart).

to Jennifer...you hottie...knock the men dead...you are gorgeous.

I would love to respond to everyone of the posts. I steal time to update. I read them all. I just don't have time. I am sorry.

Thank God Riannon just updated. I have been so worried about her. I have to go check out Jaydog's site now. Pleasant dreams.

Thursday, April 22, 2004 8:07 AM CDT

savannah fell asleep at 8pm last night. i put her to bed at 10. she woke me at 4:30am. she said...i want ???...couldn't understand. but she made a sentence. she moves her head back and forth. I moved her to the little recliner from Laura. She is watching cartoons. you can tell she is bored (she has never been a tv watcher). We were just too too tired to read books so far this morning.

we got water with a coffee stirrer straw. she drank a few sips without choking. this was at 7am. at 8am she wanted more. she started to drink faster and did choke a little. at least it is H2O. I told her if she masters the water without any choking, she can graduate to milk. So, I decided, no accessing her port today, and no IV fluids. I pulled out my maps. i will do what i can work wise while she sits next to me. I will be able to do my word work when jerry starts reading books to her.

time to sit with savannah and start working.

Wednesday, April 21, 2004 5:22 PM CDT

2:34am...savannah moans...I wake up...she is looking at me...really watching me. I woke Jerry up. We talked to her. I still could barely keep my eyes open. I asked her something (can't remember what). she said no. then i did what i have always wanted too. i got naked and climbed right in the bed with her. Her little naked body pressed against mine, just as it was when she was an infant. it felt so good, so natural, so peaceful. we dosed until 5am.

she started getting restless. the foley was leaking. she got rigid. i asked, savannah, are you seizing. she said, what? that answered that. nevermind. gave her adivan to calm her. woke up mom to tell her the good news. mark stopped by after he dropped cassie off. mom kept giving her little drinks of water. she would choke then swallow. i can't take the chance of aspiration pneumonia, so i stopped that.

hospice thinks she is having bladder spasms. this is causing the leakage and the uncomfortableness. waiting to hear from the dr on that. i think tomorrow we will access her and start a minimal iv drip. she still has fluid output. she has really slimmed down.

Tanner and Ms. Amanda stopped by after school. just in time for the tornado warning sirens to go off. My mom had Jerry put savannah in my closet. so we all visited in the bedroom closet for 1/2 hour (I can put a bed in my closet so it wasn't too bad). Mom was laughing after they left...this is a good reason to always keep your closets clean...you never know when you have to entertain in them.

Mark and Cassie called from Morrilton. The bad weather was not there, but they have to drive into it. Cassie wanted to talk to Savannah. I held the phone to her ear. she balanced it on her shoulder. cassie just talked and savannah said hi. she struggled, but it finally came out. amanda heard it,too. cool.

Happy Birthday Ashley! Remember to link to her site. It would be perfect to release a birthday balloon to her to heaven.

if anything changes, I will update more. i napped this afternoon, so i want to go spend time with her.

Tuesday, April 20, 2004 7:12 PM CDT

Had another long talk with Norine last night. Norine...I told her. Welcome home. Check out her daughter Ashley's site. The link is below. Actually check out Leilani's and Pam's links, too.

Savannah was fine until 3:45am. She began mild seizures. I woke Jerry at 4am and gave her adivan. it slowed them down but never completly stopped them. Jerry, mom, and I remained home. At 9am, I said the hell with it...Savannah, I can't take it anymore...i'm scooting you over...i can't bare not sleeping with you. I snuggled her back to my belly and we slept. For a little over an hour until the mild seizures began again. More adivan. BUT BUT she slightly opened her eyes. She could not move her head. But if you got in front of her eyes, you could see her trying to focus. If you moved out of sight, she could not follow. I thought I saw her trying. Remember, I am a scientist by nature...first response...automatic movement, has nothing to do with me. New Lisa, I saw her trying. Mom didn't buy it. Oh well.

Mark called. I told him to come over her eyes were open. He did, but he said nothing was there, she wasn't even trying to squeeze his finger. Maybe I was wrong...but I doubt it.

Then at 4pm she really opens her eyes, follows me, follows mom, follows Jerry. I asked if she can see her mommy. she rolloed her eyes like she does when she thinks you are an idiot. Baby, you are back. Mark brought Cassie for an hour. (still contagious...one more night away because savannah is doing a bit better). Savannah hugged her daddy. she also moved her head to look at jerry, roll those eyes. she probably thinks we are idiots. okay, we are.

Oh, we took the O2 off. So far, so good. I know if she seizes again, heart rate goes way up, and O2 goes back on.

Understand, this changes nothing. The ONLY thing keeping her alive are the steroids. Those damn steroids that I tried to wean her off myself. I successed a little, but when she went on hospice, the rectal dosage was a bit higher.

Lisa Wells came over. She looked at her. Followed her with her eyes. Made little grunting noises. All those kissing places on her face. She got exhausted and is back asleep right now. Maybe we can figure out a way to have her with me in bed tonight. She still has the foley (sp) in.

God gave us 24hrs. We were all here. She hasn't had hands NOT touching her.

This is the day in a nutshell.

Monday, April 19, 2004 2:33 PM CDT

Savannah has taken a turn for the worse. We are home again. She is resting comfortably at this moment. But she has been unrespinsive for 24 hours now. I got a call at 10am yesterday from her father. She woke up at 6am with a headache (common for bts)...morphine and a nap. BUT she woke up and vomitted all over at 9am. She wanted to come home. Vomitting added to headache can be hydrocephilus (which she has a mild case of). Could it be worse? Anyway, she came home and wanted to go to bed. She told us she was hurting all over. Her belly was distended and tight. The stretch marks doubled in size and several more popped up overnight. But she didn't eat much. Why? Her back hurt...her bones hurt, she hurt all over. She would stiffen like she did as a newborn with gas (not fetal position but straight like a board). Morphine, laprazaram(sp?), motrin wasn't touching it. The worse the pain got, the more unresponsive she got. Hospice on the line with us. We were wondering if she had an intestinal blockage. We could hear no sounds. Granted we didn't have a stethescope. Anyway, hospice said it didn't seem tumor related, there was no problem taking her to the er. So off we go. Christy came and got Cassie.

The dr said she was having a different kind of seizure, but they would xray. Well, that showed nothing. I told him IT IS MORE. She TOLD us she was hurting. Her belly is distended. He checked again. Distended bladder. He ordered a foley. They got out 1/2 a liter. That's a big beer stein full. She did have a seizure then at the hospital. They dosed her up. It stopped. She was asleep. She has not woke up since. The medication wears off in 4 hrs.

She was breathing so scarey last night. No breathing for 10-15 seconds. Small breath. Large gasp small breath. The cycle would repeat. Freaky. This morning she started breathing rapid breathing. High heart rate. She was so hot. Began drooling. All tumor related. We undressed her. When she cooled down, she was peaceful once more. (Jerry is reading her a book right now)

Cassie has tonsilitis. She is going with daddy for a couple days. Mom had to go get her from school.

I helped clean up Savannah this morning. We missed the bus by a minute. Instead of wigging out, I said let me drive you. We got on the interstate. The car starts shaking all over. Crap. We got off I40 and took Hwy 64 to school. When I got back to Russellville, I dropped the car of at Newton tire for balancing. Elaine picked me up, and I got stuff from work to do at home. After my car got done, I talked to Father Ernie, and then went to the funeral home. It is time. I want this to be a celebration of the seven wonderful years we were blessed with this child, not a blah dry sad funeral. The whole situation is sad enough. Don't you think?

Then I came down with a UTI. Yeah, just like that. Off to my OBGyn. Then Terminex came to rid my home of ants. Oh, and I had a wonderful phone conversation with Alex from Make a Child Smile. If you have never been to this sight, please please check it out. They are wonderful. Send a card to these sick kids. Remember their siblings. What a great organization she has created. www.makeachildsmile.org . Check it out and become active.

Prayers are nice. Prayers are meaningful. But it is not enough. Get off your duff. Start sending stickers to these kids and their siblings. Find their interests. Send them a package. Savannah was an August 2003 kid. There is www.hugsandhope.com. They basically do the same thing. We just never had time to participate with them. Donate to Make A Wish. Participate in fundraisers. Volunteer in the playroom at your local Children's hospital. It is not easy. But is life? I think it is our responsibility to society. This is what Christ taught us Christians. Don't sit high and mighty in your church. Get out and live it. Do not judge others. They just get by any way they can, and your brains can't comprehend that. It is stuck in the book we call the WORD. It is time to live the book, not just read it.

I sound pissed. I am not at all. I don't ask this for Savannah or myself. I ask it for the other ill children. I ask this for the elderly in hospice or nursing homes. I ask this for people who have disaster stick their lives. What can I do? I hear this alot. But a car load of toys. Take it to the pediatric radiation hospital. Serve meals at the homeless shelter once a week. Bible study is nice once a week. But sooooooo many think that is enough. DO SOMETHING really important. Their is more to your soul. Are you getting the picture, yet?

Saturday, April 17, 2004 4:23 PM CDT

Savannah can barely hear now. It breaks my heart. I am so scared. What do we do? I hurt so much for her loss. How will she communicate with us? How will we communicate with her? She goes to bed about 6:30-7pm now. The sleeping is starting to increase. She still gets up early. It is getting quite difficult to understand her. Before I think she knew what she wanted to say, it was just hard to form the words. Something has changed, I feel. Now she is having difficulty figuring out what to say added to the figuring out how to say it.

Her left eye is pulling in very much now. We put a patch on but it just bothers her. The pupils are dilated the same. That is good. But two evenings ago she woke up and her eyes were just pinpoints. Scary…we were in a dark room. Damn this tumor. Damn it to hell. She is back to doing stickers.

She told me today. Mommy…what baby…mommy…what do you want baby…nothing, I just want you. I want you by me. Well, I guess that sums up childhood. I was guilty. I was trying to get laundry done. All she wanted was to do nothing…just sit together and do nothing. And she had to ask me specifically. Shame on me.

She rarely makes it to the potty anymore to urinate. Poor thing. I hate having to put her in pull-ups.

She couldn’t chew a piece of candy from her easter basket. The strength is leaving her. I was very proud of her for telling me instead of choking on it.

THANK YOU EVERYONE WHO HELPED HER OUT WITH THAT!!!!!!!!

She and Cassie left for daddy’s just before lunch. Grandma Vickie was about to arrive. I will use the time they are gone and work.

It is just Jerry, mom, and I tonight. He and I are going dancing. Audrey and Kevin already said they will go. I signed up for the Kiwanis International convention in June. I will attend as a delegate, Pres elect. I figure I will need to get away by then. Susan wants to come back down in a week and a half. That will be great…but I wonder where we will be then? Just one week in the future is so distant. It is alien. It makes me uncomfortable. Damn it. I WANT MY LITTLE GIRL TO LIVE!

Thursday, April 15, 2004 7:05 PM CDT

i have felt cheated the last two days. Tues the girls were gone when i got home. yesterday when i got home savannah just layed down to take a nap. she was only up for 1 1/2 hour before bedtime. then jerry, went to bed right after i got home. i had cassie and mom, but it just isn't enough. damn work. it made me refreshed...clear head...ready to hang with the family...and wham they go to bed. understand i was with cassie and mom but i just wanted more. selfish me!

talked to chuck last night. mark's little brother. but divorce will not take him away from me as a little brother. i love him very much. he is so his mom, whom i adored. i see her in both my children. i like that. all is resolved with the site business. i think even though it hurt mark to read, it has helped. i have reread and reread the entries about him. i wasn't overboard, just stated facts. now the posts on both sides were rough. mark's change has been amazing. i told him yesterday, "like this means anything to you or not, i am proud of you."

he took savannah to a bassmasters expo at lunch today. they went to the lock and dam. he took her in the wheelchair. apparently, she had a good time with daddy. grandma vickie comes this weekend. he will take the girls. i hate to say this but i think he will have to take some of the equipment with him.

her lungs are getting congested. could be from the sinus drainage. we all have it. 'tis the season for everything to be coated in a green film of pollen. i need to start her on an expectorant. i took one yesterday when i started feeling tight. feel much better today in my lungs. but my head is filled with gunk. when she layed down for her nap, she threw up a mouthful. welcome to steroids. no comprehension when your tummy is full. the gurgling in her throat was awful. we suctioned the back of her mouth and got some (not all). of course can't do the lungs. i wish the gurgling would go away, so we can hear clean breaths. she opened her mouth and wanted me to do it. bless that sweet baby. i tried to give her robitussin, but she just choked on it. too much suctioning, just thrown up a bit, losing the ability to swallow, just too tired. always scares the shit out of me. i just want her to peacefully go to sleep and gently transfer over. my prayer continues. my prayer of paper flowers. i forgot to transfer that song over to the files.

oh, when i got home, jerry had painted a sketch he did of her the day she went in hospice. all puffy from the steroids but he captured the sparkle in her eyes. except i doubt the sparkle was there that day. it will be a beautiful scarey sad rememberence.

i wore makeup today and dressed professional. i seem to have lost the time and drive to do that the last six months. one of the installers told me i looked nice. he had no idea that comment made me feel human.

if i could find the cover for my cd, i would change songs. how could i have lost it? duh, never read poetry...never did anything for me, but that cover i would take out and read. well because i misplaced my evanescence, i listened to 50 cent today. lots of bad language. i needed that. i want to cuss...i want to mourn...i want to be angry...i want my baby to live a normal life. life sucks. but at least we are thrown happy bones to get us through. oh, i also listened to harry nillsson's, the point, and carmina burona, and a cd i made remembering college life. i had sarah brightman lined up next followed by rush 2112. i wasn't totally in the dumps all day. so i have a wide taste. couldn't call me a dead head today. please laugh at that.

i am scared about tomorrow. aren't i always. please keep posting. i may not read them everyday...but when i do i try to catch up. they help so much.

Wednesday, April 14, 2004 5:42 PM CDT

The last two days at work have been much easier. Jerry was right; it was a much-needed break. It is good to be very productive and working on overdrive.

Savannah is stable. She doesn’t talk much. Sometimes I don’t think she understands what you are saying to her. Maybe it is just too much for her to respond. Mark took the girls overnight last night. I wanted to work late, but mom really needed my car to go for a walk. Sure, then I though…Jerry time. This is nonexistent, even if we just talk about the current situation. Remember I don’t talk in the house. Little ears. Well, get home, too chilly for mom (my jackets are too small for her) then Jerry is running a fever. Yeah! Thank goodness the girls were not home. He got isolated to his room upstairs. I told him if he is running a fever tomorrow he MUST see the dr…period. Momma spoke. I then got antsy (I do this when the kids are gone). Called Kevin and Audrey. Can I come visit? Can you pick me up? It was a nice break.

Jerry saw his dr today. Acute sinusitis. NOT contagious. Savannah is happy about that. He still feels like s*&^. I am battling one myself. I hope all this drainage and snot ceases before I require something else. I feel the tickling in my lungs, though. Not a good sign. Spring is here.

This is for all those who are worried about being uninvited. To know about caringbridge, you either have a page, or are a family member, or a close friend of someone with a life threatening illness. You have a clue. You are welcome. The caringbridge extended family.

I have deleted posts before. Ones from people trying to sell me miracle drugs. Some destructive religious fanatics have been axed as well. The others I leave. It is still part of the journey. It shows how we live on edge and explode on edge.

The big theft…Iyiyiyiyiyiyiyiy
I apologized to Mark for the mess since he didn’t put them on the other site. But he did read them. He said it was painful. Maybe this was a good thing. Well, me losing my marbles was not good, but I already see him more attentive to the girls. He has picked Cassie up daily from the bus stop this week. He offered to keep the girls overnight last night (I know he gets them one night a week, but he hasn’t been due to the circumstances). This weekend, his step mom is coming down. He wants to take the girls. That is fine as long as Savannah is doing okay. Hopefully, he will get them on Sat not Fri. I plan on working this weekend.

I think and worry about Riannon daily. I know I am just steps behind that brave battered woman. I see a future me struggling daily to get by…like she didn’t struggle daily when Jared was alive.

Savannah wants SONIC tonight. So be it.

Monday, April 12, 2004 6:54 PM CDT

I went to work today. I had problems with it. I asked Jerry if it was wrong. He said I need a break, too. She is a bit better and therefore able to spend qualiity time with her grandma. Made me feel a bit better, but it was still hard.

Laura brought over a little recliner yesterday for Savannah. It is so cute. She was in it after dinner.

Thank you Paine. Apology accepted. After reading the posts, I realized you took a lot of heat on my breakdown. It had nothing to do with you. So please accept my apology.

The mystery has been solved. It was NOT my ex, although it is definitely something he is capable of. It was not done in malice. This I truly believe. Somehow my posts have been transfered to topica. This is for MACS parents to keep updated with eachother. I did not do this. I did not know it was done. In attempting to update/fix the savannahhurley site...the search engine picked up what I thought was the private topica site.

Saturday, April 10, 2004 8:25 PM CDT

I will continue here. I need it for my sanity. I need the connection with others who travel and have traveled the same path. I need the support of their friends and family, the ones who understand how we must survive makes us different.

This is what I have done. The theft began on 3-22-04. I took my journal entries as they are here, copied and pasted it in the announcement section of www.savannahhurley.com . I also explain these were taken and altered without permission. My horror and life exposed. If they are to be exposed...they may as well get it all. It is done.

We had Easter dinner this evening with grandma and grandpa. It was wonderful. Savannah ate well. Jerry fed her for the most part. Other than the confusion about what to do, it was a calm pleasant day. We have been writing thank you cards. Of course, Savannah can no longer dictate to me what to write. It takes Savannah much longer to spit out what she wants to say and get it out. But she laughed at the dinner table. It balances, I suppose.

Happy Easter to all.

The vast majority here have been invited. When the links went out, it was within the caringbridge family. You KNOW...you UNDERSTAND. You are welcome. You know who you are.

May the Easter bunny fill the hearts and baskets of all the children out there. May the Christians find peace in the most holy day of the year. May the parents see the glory of life through the wide eyes of your children. May everyone feel the warmth of eachothers support.

Friday, April 9, 2004 9:38 PM CDT

THIS IS A PRIVATE SITE!!!!!!!!!!!!!

IT HAS BEEN BY INVITATION ONLY...PERIOD!

THIS IS MY PERSONAL JOURNEY. MY PERSONAL THOUGHTS. CASSIE SAYS IT PERFECTLY. THIS IS STEALING. THIS BREAKS ONE OF THE COMMANDMENTS.

THIS SITE IS FOR A HANDFUL CHOSEN PEOPLE. THIS IS MY DIARY.

WHAT THE HELL HAVE YOU IGNORANT PISSANTS DONE TO ME? YOU BETRAY MY CHILD. YOU BETRAY ME. YOU GET ENTERTAINMENT FROM MY HORROR. POST THIS ON SAVANNAH'S PUBLIC SITE, YOU F$# SHITHEADS. THIS IS RAPE. HELLO? ANY SHIT FOR BRAINS. WHAT NOW? I HAVE TO SHUT THIS SITE DOWN BECAUSE OF SOMEONE WHO WANTS TO HURT ME.

IF I WANTED THIS ON THE OTHER SITE...I WOULD HAVE POSTED IT. GOT IT. IT IS OBVIOUS. I AM LOSING IT RIGHT NOW. IS THAT WHAT YOU WANT. YOU WANT ME BROKE? WELL, YOU SUCCEEDED. ARE YOU HAPPY?


Sat am...
I will explain. savannah has another site. many of you know that. it was the origional site. a public site. i had no control over it. and i didn't want to share some of my frustrations with the world. plus the crazies came out in droves. i was having tremendous difficulty with her fathers denial and his subsequent attacks on me. i do not trust him. he will and has used any one of my weaknesses to hurt me. he always has. i did not want to supply him ammunition. i will not even go into the horror that man has caused me. this is why i started caringbridge. i chose not to announce it to the world because it was for a select few. those who in no way would allow me to get hurt by turning this over to the girls father. this is why we had a small amount of hits prior to hospice.

i checked savannahhurley.com last night prior to going out. i actually was going out and not nervous about leaving. a true break...well...
here i find my private posts. my private stories. they have taken a very very private situation and made it public. i am shaking right now. we at caringbridge are family. the outsiders are not. i came here for privacy and someone stole it and made it public on the web. my life with jerry has been exposed. my unicorn tattoo. THAT WAS PRIVATE BETWEEN SAVANNAH AND I (and those here that I shared it with. It is covered in public. And it was put on the other site. Oh, the frustrations her father have mysterious disappeared. my entries have been altered. remember mark has the access to the other site and can post himself. what truly evil person passed this along? I guarantee this individual will NOT come forward. It was done with malice. I have said on the other site...the caringbridge sites are private. i will NOT pass along those site IDs.

i cannot find my journal entries in the guestbook of the other site. and unless somethings changed, that site, does not allow removal. hence, they were entered only through a password. Mark. i have always been a private person. 12 yrs of abuse proved this. this is not a form for that and i am still trying to heal from that, but this is the type of behavior i fear from him. he somehow thinks he has the authority to take my journal just as he takes my cigarettes.

this was stolen. my journal was stolen. then it was altered. then it was released to the world. it was done intentionally. it was done with malice. it was made into gossip.

this has nothing to do with the family here and the posts here. these are mild. i now have to figure out what i need to do. if i stop he continues to control my life. if i continue i risk everything i write to be used against me. FYI...mark told me i was adequate as a mother under these circumstances.

i cried on the way to the club last night. went later because i was too upset. i cried for cassie who is so upset that someone has stolen our private life. i was so angry i was shaking. i have been here explaining because i absolutely cannot concentrate to work or dye easter eggs. i am missing all that because of this crisis.

what the hell am i going to do?

Friday, April 9, 2004 4:32 PM CDT

My post inadvertently got blown away. I am trying again.

No news is stable news. She still slowly fails daily. She has difficulty urinating. She knows she has to go, but her brain would send the message to go. It takes a while for her. It will progressively get worse. She no longer can walk or stand at all. This is not atrophy, this is growth into the brainstem. I don't think she chews anymore with the right side of her mouth. She is soooooo tired, but absolutely refuses to sleep. But she now knows she is dying. Wouldn't you want to be awake for every moment you had left?

My parents just arrived. It is good to have them back. They are much more accepting of Jerry. Now Savannah is PISSED at Jerry. She pushes his face away. She is mad. Jerry went back to work. I asked her if she was still mad at him. She glared at me. Are you mad he went back to work? She rolled her eyes. Do you want him to stay home with you? Yes, I want him home with me. She then closed eyes and slept. Now what to do? Personally, I think it is very obvious.

The guestbook has been very active. I will say one last thing on the dog incident. I have had cats and dogs for almost my entire life. They are an eighteen yr, give or take, committment. My animals were my children. I had seen some born and held others while they died. BUT BUT when you have children, this changes. A human is a human. An animal is an animal. When I first brought Cassie home from the hospital, I slept on the floor with my cats and dog, not in the room with the crib. The last time a squirrel ran under my tire, I cried for a day. I freak when people throw away pets.

Savannah has a sinus infection. Hospice recommended antibiotics. This is not a lifesaving measure. I an glad. She is doing stickers like crazy. Keep them coming. I am amazed.

The girls brought chocolate easter bunnies. Savannah can't decide which one she wants. They also brought Razzles. Remember those? I do from when I was a little kid. Abbie was wearing the same electric blue polish on her toes as Savannah and mommy. All this per Sydney.

I started with Evanescence songs on this site. Many I have posted I have not transfered to the files. I posted the songs because the lyrics and angelic voice touched my soul. I have said before, I could have written every word myself. This music carried me through a difficult time in my life, followed by a horrendous time in my life. I was very honored by Melissa's post. Then I freaked. How can I keep changing Evanescence songs? Are those who follow this story going to think I am wanting something? Then I thought, rubbish. I am still going to do what touches my heart and what speaks to me. I hope I can somehow thank the band members for allowing me a bit of their magic. I still have not posted my favorite. And I woke up with Haunting going through my mind. There are also those saved for when the spitfire's journey ends. I have been living this nightmare for over 17 months now. I have lived her life with her and I have lived her death with her. The most powerful line is...Death before my eyes...lieing next to me I fear. I think that sums up my life, don't you think?

Wednesday, April 7, 2004 12:01 AM CDT

Savannah is home. She is much shakier (unsteady) today. Mark never brought her after Cassie got dropped off at the schoolbus. I was really starting to get worried. He didn't answer his cell phone. I finally called his house. Of course we are here...like I am an idiot. Savannah was sleeping (red flag red flag) and I wasn't going to wake her up. It would have been nice to get a phone call, so I didn't have to be scared.

Jerry got rained out this morning. He suggested Stoby's for breakfast. Savannah required quite a bit of help. All of a sudden my appetite vanished. It is that gut wrentching fear that set in. I told myself I have to eat. I tried. The cramps started. My insides screaming to get out. It wasn't the food. It was terror. I feel better now.

This is for Paine (I think the name says it all). Don't come back if you don't like it. You aren't worth my time. I am busy. Nor are you worth the time of the good people who are here to support us. It is obvious that you have come for entertainment purposes. Please go to the movies or watch a soap opera.

I had to pick up Cassie from school. Her asthma has been giving her problems. Now she is wired from albuterol. She doesn't want to lay down and watch a movie. Oh, it doesn't slow down.

Again our guardian angels are working overtime. jerry got rained out this morning. but they were going to come back in if it stopped raining. it did but savannah had already worn us out this morning. he fell asleep. bizarre. he was sound asleep at 11am. i thought he was rested. then i get the call from school. and i had to pick cassie up. if he hadn't of been here, i would have freaked.

susan is here now. i will hang with the famile now.

Tuesday, April 6, 2004 8:32 PM CDT

i have to eat crow. i did make it to work exactly at 8:30am. however, mark said he had to be in town, so he would pick up cassie. surprise! I spent most of the day gathering work i can do from the house. stuff i can do while i am just sitting next to savannah. when susan comes down, i figure she and savannah will be doing sticker work. i will be able to do word docs on the computer.

i killed a dog today. missed two big ones, hit a little one. no damage, just a very dead dog. i was going below the speed limit to begin with. saw the dogs on the other side of the road...slowed down to 35mph. moved over towards the shoulder just in case. damn, if the little one didn't turn and dart right out in front of me. his head was down. it was very instant, thank God. that was probably why there was no damage. now this is what is weird. i had no emotion. it is a dog, not a child, a matter of perspective. i like dogs. i held mark's dog in my arms when we had her put down. i grieved horribly for the loss of a friend i had. i just was surprised at my reaction. maybe it helped because the dog was not flopping around. maybe it helped that the dog never knew what hit it. what a way to go. one second there one second gone. with no pain. it is just over. or maybe i am getting numb. that would be sad. i doubt that is the case because i keep reaching out to others who hurt even with the shit here. here i am, being my own shrink. i could make good money from myself. (please see the humor here)

now the most important part. I called and talked to Savannah. She actually talked to me in complete sentences (well, two) and I understood her (well, barely). she sounded sad...whiney...but didn't say anything negative. I asked her to please please please pleas please come home first thing tomorrow because mommy is missing her real real real bad. 'okay, mommy, i will come home'. oh, angelic music to my ears.

i am tired of working. i need a shower. i will try hard to get up early early tomorrow to work before Savannah gets here.

Tuesday, April 6, 2004 7:43 AM CDT

today is savannah's big day with daddy. i gave her two doses of miralax yesterday. she had two big messy blowouts. she is now acting much better. talking better then yesterday. i think she is happy for an outing. she wants daddy to get her breakfast on their way to his house.

mark is going to watch her so i can work today. he will show up at 8am. by the time she gets loaded and i get to work it will be 8:30. then i am supposed to pick up cassie and take her to dardanelle this afternoon. when he watches the kids, i am never allowed a full day at work. jerry is a sweetie. he said he will pick up cassie.

yesterday i asked daddy if he would take care of something for me. 'only if you ask nicely'. i said, since when don't i ask nicely?. you always ask nicely, just something to say. what a complete ass. Everything he does for the children he must be asked. i have more people laughing at him over this. i just keep my mouth shut and everyone gets floored. i suppose that is my vindictive streak. sit back and allow his nature to make him laughable. sorry to sound negative. his arrogance gets to me. i don't say much, so i am writing it. my safe haven?

my cousin is coming tomorrow. i can't wait. she will be here 'til sat. mom and dad will come back on fri night.

easter is this weekend. i have made no preparations. actually, it snuck up on me. well, i'll update later.

oh,
address for stickers

104 Cambridge Ct.
Russellville, AR 72802

Cassandra's middle name is Charline

Monday, April 5, 2004 1:52 PM CDT

Savannah was so tired yesterday afternoon and evening but she refused to nap. same goes for today. she did finally ask to go to bed at 8:30 last night. up at 4. momma needs a nap.

it is just the two of us today. back like it used to be. i like this. i just wish she would take a nap with me. i LOVE holding her as i fall asleep. when the girls were little, i always napped with them. it started due to breastfeeding them. nursing a child knocked me out. i still swear there is no greater feeling in the world then a child suckling momma's breast. so this extraordinary feeling became my very special time with the girls. i napped and slept with them. cassie was weaned at 13 1/2 months. i was so ready. i wanted my independence back. i decided with savannah...no more than 6 weeks. i would pump like crazy, but i would not be tied down. i don't know what happened. 3 1/4 yrs later, she was finally stopped. i still miss it. i still feel letdown every so often, too.

that was one of the hardest things for me to get over. breastfed babies aren't supposed to get sick. cassie has asthma and savannah chronic ear infections and terminal brain cancer. i ate healthy during this time...actually took care of myself. sigh...other then the above ailments, they were very healthy.

cassie's asthma is acting up. fun in the outdoors. Lisa...DO NOT BLAME YOURSELF...GOT IT? She has her inhaler with her today. her peak flow meter puts her in the caution zone, barely. so i am not too wigged out, but i am watching it closely. that is not something we have time to deal with right now.

mark is going to keep savannah tomorrow. i think it will be good for them both. if all goes well, the girls may both spend the night. it has been a long time since savannah has been there. i will attempt going into the office. i will probably not be worth much, but i hope it will refresh me, so to speak.

savannah's middle name is Phoenix. I went through every baby book. I listened carefully to every name I heard. Nothing went with Savannah. Then I found that. (that was if she was not going to be Madison Taylor) I have thought about that a lot since she was diagnosed. Some kind of pre-determination here? Just strange. I don't dwell on it. Just occassionally pops into my head.

she hasn't talked much yesterday or today. the last two days she never made it to the potty. today she hasn't missed a beat. the right side of her face has slowly been getting progressively droopy. i am trying to stay positive. i refuse to speak of these things in the house. the little one still has good hearing, and i don't get out of her hearing range for more than seconds.

i received a call from my ex's stepmother. she wanted to come down. this weekend or later this week. but according to mark, that has been postponed. so mom will come back on wed. i hope that is a decision she will not regret. my cousin has said something also about coming down. savannah says that is fine. she really enjoys the attention. even if you just sit with her. back to my little one. i will curl in a ball next to her while she continues with her stickers. I am also in a crisis. i think she may only have enough stickers to last this evening. aggghhh!!!

Sunday, April 4, 2004 3:19 PM CDT

I wanted time allowed for all to read the last journal entry. If you missed it please go to Past Journal Entries.

Yesterday evening was very nice. Even though I was out, I was jumpy and uncomfortable not being with my baby.

Apparently the Real Pageant party was wonderful. Thank you so very much Lisa taking over the sitch(KP word) and seeing it through. Awesome!

Savannah was so tired yesterday afternoon and evening. She refused to take a nap. We tried everything. But her mind was made up. Around 7:30 she fell asleep. Mark and Vickie showed up at 7:55. Kevin and Audrey picked us up at 8. Off to the club.

For this club having such a bad wrap, they sure take good care of us. Larry, the manager always greets us. I told him it was an early nite...can't leave Savannah for long. He got with Rags, the DJ. He came over and said he would play us some dance music early. But the volume had to remain low until the band starts. Okay. What do you want to hear. Oh, you know what we like...linkin park, evanescense, nickelback, nelly. so for 1/2 hr he played and i danced. audrey even joined me on the floor. remember I don't mind being the only one on the dance floor. i blank the surroundings out anyway. i guess a few people there understand why i am strange. Jeanette seemed to have an okay time. she didn't drink. she said she had to start getting anxious for her flight this morning. understand, after a lifetime of trancontinental flying, she can no longer do it, or do it well.

mark and vickie were fine when we arrived home. savannah had woken up, so they were both with her. they left. i am still wigged out about my ex being in my house without me here. i don't trust him. i am working on getting over that. i tell myself...it is about a seven yr old girl, not a 39yr old woman with issues. i am so glad savannah got to have daddy time without mommy hovering around. i think it is good for them both.

i got my sister to the airport this morning. three days in a row to LR. Gas prices are killin' me. it was absolutely wonderful having her here, even if it was just for a couple days. i actually cuddled with jerry twice. jeanette was with savannah and cassie was gone. we never have that kind of relationship when the kids are present. but i actually layed down with him and he held me. i felt safe. so safe i held back tears. we talked. i was warm and at peace. i could hear jeanette and savannah. i wanted to nap but i just listened and relaxed.

last night savannah wanted just me. i was in heaven. we held eachother all night. we stared into eachothers eyes as we fell asleep. we continued when we woke. jerry slept in the hospital bed.

savannah is putting stickers on paper all by herself today. that is a great improvement since yesterday. she asked me if it was lunchtime yet. yes. she decided on meat and cheese. what kind, sweetie? whatever you get is alright with me. oh, what an angel! I am so proud of my little warrior. We have been given a few more days. Oh, she didn't have a headache last night or this morning. Yeah!!!

I have a bath drawn. Then I have to go to the grocery store with Cassie. She has a food project to make for school.

A wonderful weekend at the Hurley house. Peace to you all.

Saturday, April 3, 2004 11:17 PM CST

To everyone reading expecting the excellent writing works of Lisa Hurley, sorry this is her friend, Lisa Wells. I have hijacked the site...and kidnapped her eldest daughter as well!! Having successfully obtained the secret password to the website, I wanted to let everyone know that our efforts to give the Hurley girls and Jerry all some special time and attention was very successful.

Last week during my first special visit with Savannah (which I thank Lisa and Jerry so much for allowing me to come and spend time with her), I had asked to have Cassie Saturday for a girls’ night out. Learning that Cassie was scheduled to be with her dad for the weekend, my little brain gears started churning. Like all of you, I have been really struggling with what I can do to help and support them through all of this in anyway. Knowing that they are not quick to accept much help, my aggressive side took over and the plans of tonight began to fall into place. Also knowing how much they love both of their special girls and that as of late much attention is directed toward Savannah for more than obvious reasons, I felt a night devoted to Cassie was perfect!

I (gently) asked Mark if I could have Cassie for my plans. I (gently) suggested that he and Vickie could enjoy some special alone time with Savannah and we could really get Lisa some much needed sanity time, time for Lisa, time for a moment – brief as it may be – for an attempt at some sort of normalcy. I could tell Mark wanted to do it, but seemed a little hesitant, so I was careful not to push, much anyway. However (point for Mark), he did mention to Lisa that I had made that suggestion…just not quite the way I had planned. So, since he opened the door, I widened it. In brief, we worked it out so that Lisa and Jerry could actually get out for a few hours tonight, I am sure she will update you on their fun. Savannah had some much needed time with her dad, and I am going to tell you Cassie’s story.

I picked Cassie up at home just before 3:00 in the afternoon. We went through a few outfits, found the perfect one…and off we went. (I will share that precious Savannah was cuddling happily with her mom on the couch, she looked so cozy there with her. While I was there I got a nod in response to my request to come visit again soon, and a big smile when I bragged again on her Tic Tac Toe abilities – she always, always, always beats me!)

Cassie and I had a nice drive over to my house – Lisa should be proud, the child knows all of her multiplication tables, and now I do as well – we sang them all the way up to 12. Once we got home, Brooke and Sydney giggled at everything that Cassie said, and all three girls were pretty quiet in the girls’ rooms. During my shower, I was interrupted with three very proud girls as they had been playing dress-up Cassie. They had gone through every item in their closet to find the special outfit that THEY wanted Cassie to wear. She seemed pleased and enjoyed a cute black satiny skirt with a sheer overlay matched up with her own very cute top. Brooke and Sydney pampered her with their hair fixing abilities and she was good to go with a cute partial pony with a sheer black ribbon piece to match her skirt – Brooke topped the look off with the hair straightener. After about an hour or so with all of us in my bathroom, we were all set to begin our girls’ night out.

We were scheduled to meet everyone (Jennifer and Abbie Skaggs; Jennifer’s sister Peggy and her daughter Cameron; and Aundrea Simms and her daughter Mattie and friend Shelby) at Jennifer and Abbie’s house at 4:30 p.m. Well, I have never in my life been anywhere on time, so we met them all at the next station – Las Palmas for dinner. But first, the girls and I opted for some shopping and popped in Goody’s for some cute new spring shoes. We picked a cute matching sandal – Cassie in white, Sydney in blue and Brooke in pink! How cute were the triplet feet!! Las Palmas was great...crazy, wild, and a little loud, but great.

After dinner we headed to the main event, a local Miss Arkansas preliminary pageant. Because we missed the Miss Jennifer house stop, we had to do our makeup in the parking lot – glossy lips, lengthened lashes and sparkling cheeks for all. They were precious! We also took a few photos outside, some inside the foyer and then some in our seats. The most special picture of all was one coordinated by Miss Aundrea who arranged for us to meet the outgoing Miss Lake Dardanelle on stage for a group photo. The girls thought that was such a treat, several – including Cassie – stating that they touched her and were never going to wash again.

After the pageant, we headed to Stoby’s for dessert. After about 2,000 attempts to order, we finally settled on pretty much whatever they would bring us. We enjoyed the fellowship, but the service and even snacks left much to be desired.

On our way home, Cassie, Brooke, Sydney and I decided that it would be cool to just keep Cassie till Sunday - so, I notified Lisa that Cassie had been kidnapped. Of course she obliged not wanting to be the one to stop the party! We came home, dressed in pajamas and went outside for some late night tether ball playing. We have now moved on to movie watching and they are screaming for snacks. So, I think Cassie’s night was great fun. We plan to end her special time by introducing the Catholic girl to the Baptist Church! I hope the Sunday School teacher will survive the three of them together...I am sure we will let you know how it goes.

One last note – plan to take advantage of my press time here – Lisa and Jerry are doing a wonderful job raising two beautiful little girls. I know how much it means to them the support and love everyone shows. They are so gracious to share with us the time they have with Savannah. It is no wonder we have all fallen so deeply in love with this child, she is being taught to be who she is by such great and loving people. Sorry to be so long, I wanted to share pretty much every second of Cassie’s night and I am very big on the details.

Lisa Wells
friend of the family

Saturday, April 3, 2004 4:20 PM CST

I got my mom off to the airport. Lisa W picked up Cassie for the pageant. Those girls are going to have a blast. The whole evening is scheduled. Hair and makeup. Dressing up nice. Dinner at a restaurant. Off to the pageant. Ice cream following. So cool.

Savannah has been quiet today. She seems tired but refuses to sleep. She did eat. Very plainly she said...I want a sandwich. Well, Jerry made her one. She ate the whole thing, plus 1/4 pickle, plus a couple cheese puffs. If I ate a meal like that I would be out like a light. That's the biggest reason I don't eat dinner. (last time I ate dinner I was sound asleep on my diningroom floor at 7:30pm...that's the night the food disappeared from the fridge and ended up in Savannah's new refrigerator) Savannah has been putting stickers on paper this afternoon. You have to bend the sticker so she can grab it.

She hasn't made it to the potty today. That's okay. It's nice that that is the worst of it today.

I will be very nervous about leaving Savannah with Mark tonight. I know I need a break. I trust him as far as I can throw him. I have to clean up. Audrey and Kevin want to go even though it will be a short night. That will be good.

Friday, April 2, 2004 6:11 PM CST

thursday was so busy. i wanted to post. never never had time. so many things to say. pulled in every direction.

savannah gets better daily. she is talking a little. she is just like a stroke patient slowly coming back. actually she probably is. she has been urinating and having bowel movements in the toilet. she can communicate a little. jerry still has the special touch. hospice is here several times a day in different capacities.

the pain has seldom been her tumor. it is muscle spasms, abdominal cramping, and severe muscle restlessness. yesterday morning she woke up and said her head hurt. morphine and 3hrs addition sleep took care of that.

tomorrow nite mark and vickie are going to come and stay with savannah. jerry, my sister, and i are going to take a break. 8-10:30pm. i so want to go dancing. but the music doesn't star until 10 and the club is 1/2 hr away.

i don't talk enough about my mother. she has been here since savannah had her first major seizure. she has been a Godsend. she feels like she does little or nothing. i don't know what she wants. savannah caretaking has been a three man operation until today. now she is a solid two man operation. jerry went to work today. this was the first day that actually was possible. my sister flew up from fl this morning. savannah said it was okay to take care of grandma while i went to pick her up. tomorrow i take mom to the airport early in the morn. sun i take my sis to the airport. tues dad will drive mom back.

2 nites ago, jerry took savannah to bed. she didn't want to go. he asked her could he lay down with her...yes. i came in 10 minutes later. both sound asleep. they were embraced. it was the most beautiful site i have ever seen in my entire life. it was like i was spying into a deep love. (where the hell is daddy in all of this?) they were sleeping face to face, both in psuedo fetal position. his arm resting on her hip. her hand cradling his face. her arm wrapped around his arms. she was breathing steadily, peacefully (the nite before she was gasping, remember). it seemed like a lovers embrace. for anyone who goes to a bad place with this...f u. this was love. nothing dirty. nothing disgusting. i just stared and thanked God. Thank you for allowing her to know pure love. thank you for allowing this man into our lives. thank you for allowing me to witness my dying child in complete comfort and peace. thank you for giving me a site i will never forget 'til the day i die. thank you God, for Jerry for Savannah. I am still nothing. That baby is everything.

Yesterday Savannah was in pain. ouwy...ouwy is all she would say. mom, the hospice worker, and myself were at a loss. i just wanted to cry. jerry, please come here. in less then 30 seconds he found out she had a big knot on the back of her neck. muscle spasms from right side paralysis? spasms from her head bouncing all over? it's like we needed some from of brace to hold her head still. a 60lb infant. full of frustration. screaming at her inability. i want to explode with the horror of this. i knew all of this was possible. so i am not shocked. it just breaks my heart.

everyone asks me, how is mark with this. i think i am being so nice. i will continue to be so because i no longer trust the privacy here. but he is absent. some ask if it is denial. no, don't think so. i think it is fear. i keep offering. it is so important for savannah to have her father, and he keeps telling me his wife is just too uncomfortable over here. i just don't buy it. she is a mommy, too. i hope he comes around before it is too late. i don't even care to be around him and i keep offering my home for him and vickie to be with savannah. everyone says what the hell is wrong with me. don't know. all i know is i have to keep offering no matter how uncomfortable it makes me. guess i am used to being kicked down.

lisa w is taking cassie to a pageant tomorrow. all fru-fru girlie stuff (okay, that's all lisa and not me) but the whole thing is cool. mark is coming over to be with savannah. she is doing this for a break for cassie, for sanity time for lisa and jerry, and for together time for mark and savannah. it doesn't feel natural. but i know sanity doesn't come easily. i am grasping here.

jerry and i had a couple hrs of talk time last night when savannah went to bed. we talked about our fears. you know, seriously, no matter how good she recoupes, she can be gone in 24 hrs. we no longer live day by day. we live hour by hour. knowing the ultimate end. of God, what a horrible existence. what a truly wonderful existence to know she is here for another hour. our bodies are worn down. our minds are toast. i told him that i honestly don't know if i am capable of watching her have a seizure again. i don't know if i am capable of watching her gasp for air while ripping out her O2. How are we going to do this? Oh God, how are we going to do this? I can NEVER be what I was the first time. We are battered. We are exhausted. We scrape by everyday with a now brain damaged child grasping onto life. I would have it no other way and neither would he. The finale is still the same. Nothing has changed since dx. But I was granted the gift of time. Mom tells me parents do so much for the sake of their own guilt. Well, so be it. But right now I can say I HAVE NO GUILT in what I have done with this angel. I am sad she was never well enough to go on a disney cruise. But her health was out of my control. No guilt, just sadness. Thank goodness I took the girls over the first part of spring break for a mini vacation. Thank goodness for everything that has fallen into place, that has allowed me to give this angel in training everything life has to offer. I am so humbled.

I listened to Evanescence tody. That poor CD should be long worn out. I took a two week break. it was so painful. i felt so good to feel my pain. i need to get another song posted here. this song belonged to adele. i love it, but it isn't savannah's or mine. i could never have made this journey without the anger of eminem and the angelic pain of evanescence. funny from a deadhead, huh?

Wednesday, March 31, 2004 6:08 PM CST

Another restless night. She moaned as if in agony all night. We were up again for the most part all night. Morphine and adivan. she begged for more and more fluids. it gets so very dangerous if the body goes from being starved to overload. I remember the stories opa would tell me from wwII. his friend dying after being starved in an american pow camp by eating a boiled egg upon release.

everytime she would close her eyes she would stop breathing. she would then gasp after 15 seconds or so wide awake. i had to come to terms with the fact that if i fall asleep she may be gone when i awoke. so freak'n hard. but it would be a wonderful way to go. sleeping between two of the people that loved you more than life itself. this is good. i slept for about 1 1/2hrs. we awoke together, she was still moaning. i got some milk for her. jerry held her. she wanted him last night only. this was okay with me. no jealousy at all. they have a bond beyond comprehension. their bond, i see, spans centuries. i got cassie ready for school and took her to the bus stop. savannah was still just holding him begging for more milk.

i held her when i got home. mom woke and took her. savannah drank another 8 oz of fluids. i was smoking a cigarette outside and she yelled lisa. i ran in. mom said we have good news and bad. mom's leg was covered. savannah had a bowel movement. shot out the side of the pullup all over my mother and the sofa. i said there is no bad news here. her intestinal track is working. i cleaned savannah. jerry cleaned the sofa. mom cleaned herself. the bowel movement was like a breastfed childs. savannah was laying on her side stretched out on the floor, and fell fast asleep. nobody even got near her. i went to lay down by her, but a foot back. i can't disturb her. jerry laughed at me. you can't do it. you are incapable of not touching your child. i just looked at him. maybe so, but today is different. i can't disturb her. and i remember when they were infants. sleep when the baby sleeps. i did, for 1 1/2hrs (in and out yet still conscious of all around me...moms know this sleep). savannah slept for 6 hours.

lisa and jennifer came over to be with her. i took my mom to kiwanis with me. jerry stayed. savannah slept the whole time, so i was told a rain check was in order. she woke around 2:30. i bottomed out. i wanted her to lay down with me. savannah belted out a moanful noooooooo. my body was falling apart. lack of sleep and i think depression set in. all i wanted to do was crawl in a small closet and sleep. mom and jerry took savannah in the kitchen. jerry was making chicken and dumplings (he cooks very good too). i curled on the loveseat under one of savannah's quilts, feeling totally inadequate, and went out like a rock. for 2 1/2hrs i slept hard. I feel a little better, but i am so scared. this is a cruel joke. she is getting better. even one of the hospice people didn't think she would make it 72hrs after last friday. there is so much damage, yet we are given time. i pray she doesn't have to repeat the seizures. i will not leave her side, but i will be destroyed. we all will. please pray for strength for all of us.

we live hour by hour. that scares the sh*& out of me. people talk about tomorrow and it seems so alien.

Tuesday, March 30, 2004 6:51 PM CST

Everybody is probably freaking.

How are things? stable? who knows? it changes several times a day.

Sunday nite, Savannah was sooooo very uncomfortable. She barely slept. Jerry and I didn't sleep. I was on the phone with hospice from 4-4:30am. We decided to put her on fluids. Minimal. 20cc/hr. It took all day long. Finally at 9pm she was accessed. I will return to that later.

Monday was grand central here. all types of people from hospice, equipment people, a friend dropping off mail (she took cassie out to dinner), another old friend, Father Charlie and Father Richard even stopped by. They were at my parish doing the Easter confessional (I called it Confessionals-R-Us...remember the catholic jokes come from catholics...if you can't find humor with yourself...you know). It was wonderful but busy. Savannah was so weak. Her daddy was only here for 70 minutes. His stays with his daughter become less and less. Its funny, Jerry says to hell with money, that baby needs us...and daddy is just too busy. Go figure. That is why this man was sent to us. He hasn't left her side since last Monday.

She had fluids last nite. She woke up bright eyed. Her mind seemed there. She had more strength. The new problem...the needle in the port dislodged and the fluid just entered her tissue. We removed the access. She is so swollen and bruised that we will have to wait to reaccess her. It will have to be done at the clinic by her pediatrician. But she drank about 3 oz of oj and 1 oz of water today. She keeps taking off her O2. I have actually raised my voice to her a couple times.

Her breathing is different. She is not getting enough O2. Her lips are a slight purple. I think that may be one reason why she is so restless. We can give her morphine every 2 hours. We haven't needed to, but it has helped at times.

She just had some cream of chicken soup. she wants milk, but you can hear the fluid in her throat. she isn't strong enough to clear her throat. she drank a total of 1/2 cup on her own today. savannah is pissed at me. she wants milk. we cannot overload her stomach. it has been empty since friday. everyone keeps saying wait for mommy. i just heard it again. i said di she roll her eyes? Oh yeah. that means she is pissed.

i just took the polish off her toe nails, cut them, and polished them. she watched the whole time. kept reaching for milk. kept telling her not yet. this breaks my heart. i don't want to deny her but lack of food with sudden food is a bad bad deal. you must be careful.

Lisa Wells came today to visit. Your tears sweetie were just fine. they were with jerry and i outside. i certainly do not expect anyone NOT to have emotions. This child they have grown to love is dying in front of them.

i cried today. i cried for savannah that her father is a selfish jerk. nothing has changed. he can't deal so he blames his new wife. does she know? at least he has stopped checking her pulse. good grief. the visits become less and less. i don't want to release...this sight has now become way too public from what i understand. i still have another child i need to protect. it is so hard...i get a phone call...they always ask about mark. what the hell can i say? absent! obligitory stops. blames vickie being uncomfortable. leave her at home.

time for bundle.

Sunday, March 28, 2004 11:04 AM CST

Savannah is as stable as can be, I guess. I thought earlier, she may not be there. The eye dialation did not change. It was a blank stare. But I asked if she wanted to see her tattoo. She looked down at my breast. Then I had to remind myself where the tumor is located. In the last 1/2 an hour her eyes have become very uneven. It is odd after her first seizures, her eyes were normal again. It was like a shifting of the pressure on the cells of the stem that control it.

Thanks Kim for your entry. I have already done and said all that to Savannah. Almost in the same words. Everything you wrote is upfront in my mind. Savannah does win. When she crosses over, she beats the monster, she is the winner. I told her all the people who love her and are waiting for her. Yes, Ashley and her will play. Pam had to leave behind her little girl, and would most definitely want to cuddle with you. Leilani would be a perfect big sister. I found your little brother (and this one isn't a cat). But watch out for Jared. I think he is a spitfire, too. And many more.

Jerry took Cassie fishing for a couple hours. She really needs a break. But she, like the rest of us don't want to leave Bundle's side.

Her father finally showed up at 7:40 last night. He comes in and takes her pulse. Iron skillet moment. I don't really bother with the pulse unless she gets restless or begins seizuring. Maybe he cradles her, caresses her, and kisses her when no one is around, but no one has seen it or walked in on it. He told me that he and his wife worked outside all yesterday to keep their minds off of it. Selfish bastard. I have mentioned before, I truly think there was divine intervention to end my marriage. He, with rights, over my child would have meant disaster. I mentally couldn't have done it with him dragging me (the family) down. Mom said for the most part they sat in the livingroom and watched tv. Mom would go in the bedroom and stay with her. They would just do a couple minutes at a time.

Mom always said, I expected too much from him. He may not be able to deal with it. Duh? Who can? It doesn't matter. We have NO choice. I seem to be the one that his behavior isn't bothering. I shrug my shoulders. My home has been opened to him and his new family. I told him they may sleep in my bed with his daughter. I cannot say I didn't try.

Last night Cassie was in bed with her. Savannah was breathing regular. I told Jerry to sleep next to her. He argued a bit. I told him she would like that. When things turn, mommy will not move from her side. Please, for her. I slept at the foot of the bed in the hospital bed. She does need a daddy now, too. And not one that just checks her pulse. One that holds her, touches her, constantly talks to her, tells her thank you for teaching me to truly love. Not that Jerry ever is a fathers replacement. He is just Jerry. This man was sent to us. He spends the same amount of time with her as the rest of us. Anyway, last night, Jerry said, she moved her leg up and over his.

Mom and I are going to bathe her and move her to the livingroom. I hope the move doesn't aggrivate the seizures. The mighty fishermen have returned.

Saturday, March 27, 2004 5:41 PM CST

Savannah started seizuring alst night at 8:40pm. They wouldn't stop.

Earlier that day, I had contacted hospice and asked to have meds in prep for the weekend. morphine suppositories and adavan (sp?). I had NO idea we would be using them so much so fast. The hospice nurse was called after 10pm. She had to drive from Conway. She went and got us more meds too. The adavan was being administered every 30 minutes, the max dosage. Her breathing never got shallow. We had to suction her mouth on a regular basis. Her father and his family came. She couldn't stop the seizuring.

I called Norine. I didn't think she would make it past midnight. She did. At 3am, the seizures stopped. We all begged her to go. We prayed for God to take her. I prayed to Mary to intercede on the behalf of another mother losing her child. I can not explain the overpowerful emotion of begging your child to die because of the love you have for them. Why won't she go?

She is unresponsive. She had a small seizure about 45 minutes ago. Her heart rate has been between 160-180. Her resirations at 44. My baby's heart is so strong. Her pulse has finally slowed just a little, but it is so high. Her body is so hot. Hospice had taken her temp before, normal...but she is producing so much heat. These can all be symptoms of just the tumor.

Father Charlie came. We went over all my preparations for the mass. He is a wonderful man and a wonderful priest. Savannah and Cassandra adore him.

It is time for everyone to now pray for what is best for my little girl. She must go? The damage is great.

Friday, March 26, 2004 11:25 AM CST

She sleeps. She awoke at 5:30am. I told her mommy will go to the bathroom and we will go watch cartoons and have coffee. When I came back from the bathroom, she was sitting up. Jerry was sound asleep. My baby. Jerry...look, look at my baby. she did it on her own. she drank about 1oz of H2O. she started moving around. restless. i handed her the little doll. (i'll explain later) do you hurt. remember what to do. nothing. 5 minutes later, she reached for it and held it in her right hand (the one she hasn't been able to volunatily move or control). Because it was this hand i wasn't sure if she was really hurting or her brain just misfiring. i don't want to morphine her few alert moments unless necessary. jerry said, baby are you hurting? she put her arm around his neck and held him tight. i got the morphine. she seemed to refuse it even though she just drank. but i remembered what norine said. the tumor may now allow her to open her mouth. brain tumors are odd beasts. pressure on a cell...wham a symptom. slight pressure reduction or growth it can reverse. symptoms can come, they can go, they can stay, they may never return. You just don't know what the hell is going to happen next.

she was sleeping in my arms an hour ago. she coughed. i almost cried. i hadn't heard her do this since sunday. i thought the ability was lost. actually, it may have been, it may still be. when she was drinking earlier this morning, there was a slight gasp. i think she choked, but her body made no response to clear. it was just a drop. aspiration is my most deep seeded fear.

At Give Kids the World, Savannah took a little doll, for lack of a better word. it has a smiley face on one side, a sad face on the other. This is for communication purposes. I don't think she is capable of discerning the different sides, so i just asked her to hold it. last night laura came over. we were sitting in the garage and mom comes and gets me. Savannah had been repositioning herself all day long...just could not get comfortable. mom said she was in pain. i got the morphine. it took her 45 minutes to relax. and she was cross-legged. so sweet.

earlier i went to sonic to get us something to eat. I asked jerry to come with me. first instead of turning right to go into town, i turn left. aren't you going to sonic? yeah. don't know where i was going, no clue. then i sit to make a left hand turn, traffic on the other side turning...i just sit there. okay, i thought...left turn only lane, five cars, not one blinker, i go. damn, the next decides to go straight. so i almost caused an accident, and most definitely it would have been my fault. i thought i was fine, i really did. but it proved to me i am not.

after this incident i asked mom if i could go out for a couple hours, only after the girls are asleep. i think i am faltering, i think i need a break. i thought i felt okay under the circumstances. i don't want to leave. i am scared to leave. but i am unraveling. at 9:30, I asked jerry to take me to clarksville. he was ready for bed. so exhausted. he looked at me in the eyes and said, of course. i went in sweats, no makeup, and a bandana covering hair that had not been brushed. i did not dance. when he played evanescence, i went into a fetal position and bawled. jerry just held me so close. the convulsions came and the tears continued.

getting busy here.

Thursday, March 25, 2004 3:52 PM CST

Savannah slept peacefully last night. She awoke close to 6am with recognition in her eyes. I asked if she wanted to go sit on the sofa with me while I have coffee. No response. Baby it is time to put lotion on your tattoo. You must take care of it. She put her arm around my neck and began to lift her body up. Yes, she put the lotion on it.

She has moved her right arm today. Jerry made her chuckle. And she said Shady (that is his black cocker). She seems more aware.

We have turned over her care to her pediatrician. He told Mark he has been researching specificaly her disease. She has gotten better, a bit, why? She is for the most part refusing fluids. The body is using what it has. As the fluids are being used, the pressure in her head is slightly diminishing. Hence, the bounceback. He will honor my request for IV fluids, if I so choose.

I have held her and napped with her most of the day. It has been quiet. She has sat on the front porch with my mother. And she still prefers to watch cartoons. I think it has been a quiet day for all of us.

I had every intention of wiping out last nights journal entry. But I thought it best to glance at the posts. I was astonished. I will leave it.

I ate lunch today. I was hungry. It was not something I forced myself to do.

Wednesday, March 24, 2004 9:40 PM CST

I am preparing to write my most inner thoughts...my most inner faith. It will offend very many. A few will relate. A few will be intrigued due to a deep seeded recognition that they don't know how to handle. In no way or means do I mean to offend anyone. My youngest child is an 'old soul', as am I. We recognize this on others at times in our lives. I have always known this. My conversation with her tonight in a nutshell...

We live...we love...we go to heaven. We are rejoined with are love ones. Then we come back. We live, we love, we return to heaven. A cycle. Sometimes we meet someone we love from before. For some reason, we know. We react to them differently due to a timeless bond. We don't know why. It is just a bond. This bond I have recognized between you and another individual. So I, because I love you with every breath, have allowed you to love and allowed access into our lives the chosen one you need. Your love was there long before you were my daughter. Savannah, you are mine, you always will be. I am you. You are me. The bond can never be broken. I love you so much, with all my heart, that if you cling to another right now, it is okay. (since I released her to God she won't have much to do with me...is she still protecting me?) After I told her this...her body changed...her eyes changed. She wants me once more. I released her to God, but now I also have released her another bond. She seems at peace. She hasn't had a seizure since and has been aware. I still know this is so very temporary.

Many may think I am so bereaved I have lost my mind. This is not true. I am more sane. I love my Lord. I love my children more completely then ever before. This is my soul. Never revealed except to a select few. This is me since I have been a child. I learned to love Christ and my mother Mary thru my Catholic upbringing. And yet this is still different. I love my faith. But I also love my heritage. How many recognize your religious heritage? (my personal opinion...you missed the boat if you don't reognize your history...It is what made you who you are)It is probobly more important then your nationality. Protostants stem from Catholic. Because you choose something different, a more comfortable place for you, that is still you heritage, ther is nothing wrong. Catholics were and are believers in Christ. Who was Christ? A devote Jew. God's 'Chosen people' Always remember, us gentiles are not biblically chosen. Where did jewdism come from? They sprang from paganism. None of this is bad or eveil. It is a progression, an evolement. It is our heritage. It really is possible to hold your chosen religion is esteem yet honor how time had allowed you to arrive here. It is so very beautiful.

I NEVER would have shared this...Never. Many will crucify me or think this momma has lost her mind. But it's not that at all. I would have been content to keep this inside to my grave...BUT something I was missing for my youngest daughter. I spoke to her, and she changed. She, as a brand new 7yr old has to accept death. I have had idiots, over the past 17 months, tell me shit like, if she accepts Christ she will not be scared. I want these people penned and castrated so they cannot reproduce. Do NOT, ASSUME a child is an adult. I am not afraid to die...BUT a CHILD does NOT want to permanently hang out with the dude we sing songs about, who died on the cross for us. THEY WANT THEIR MOMMY AND DADDY. PERIOD. Any mother worth a crap, can see this. The breaking apart is so much more fundamental. Us mommies tell our babies to go to God. I really don't think they would go on their own.

God, Christ, Angels, Heaven...is doesn't matter. We have to send them thru death. The reversal of birth. The tunnel to life now becomes the tunnel to death. AM I ALL ALONE? Why doesn't anyone else talk about the nature of the life given us? What has become of our society? Death used to be reveared and honored. Now we slap a Jesus on it and send it on its way. Most of us here on caringbridge are a special breed. We love beyond compehension...we love beyond reason. Unless you live what we are living...you don't have a clue. In general...we see hypocrisy. Yet we become more religious, more spiritual. We leave the norm. It is not that we can't cope. It is the norm can't cope with us and or situaton.

Now that I have scared everyone to death...
the emergency tattoo is done. It is beautiful.

The adrenaline is fading. I am tired. Savannah is stable, not good, but stable. She sleeps peacefully just 10 feet from me. It is time I climb into bed. Cradle her as I did thru infancy.

Wednesday, March 24, 2004 3:06 PM CST

Savannah is in and out of sleep. I do not want her in the bed. I want her in the livingroom, where family is. One of the few memories I have as a small child (it may also be a powerful feeling) was this. As I lay sick in my bed...covered in quilts...drifting in and out of sleep...I hear my mom doing mom things in the house. Like dishes, laundry, cooking, you know...the sounds of home. Only holding my babies fills me with a greater peace then those memories. Almost 40 years later when I am ill, I go there in my mind. SO, I want her to know we are there...know we are with her...know that life has not stopped. At this moment she is actually watching tv. Maintaining eye contact with the set.

Her breathing is regular and peaceful.

Yes, the unicorn is here. It is beautiful. Nobody has seen it. Has to be covered for two hours. Savannah will be the first to see. She understood when I told her. I KNOW she did. Richard and Michael were so wonderful. I will put a picture here. I may wait and let the redness subside a bit. The one I have posted now is when it was brand new. It is ligther and more defined now. I was freaking out and scared this time. Not because of what I was having done...but not being with her. I had to do this with urgency. I have to fulfill her request. Was she waiting? Or could she be in the getting better before she passes? Or is it just the dosage of steroids? Who knows...but I was fearful...I was crying...I was pacing. Once we started I was at ease. I enjoyed it. I was able to break away for a little while. I started to feel guilty, but allowed myself a break. Plus this break is for my daughter.

By the way...it was a bit uncomfortable, but it really didn't hurt. Mark knows what I did. He couldn't believe Savannah asked for this. Jerry confirmed it. Mark was there when the sketch was done. He saw her okay it then pick out the colors. He saw her point. But he didn't understand, neither did my mom. She looks real pissed off right now. Her daddy stayed here with Savannah while I had it done. At least he is not judging.

Time to go smoke a cig, then sit with her. I need to hold her and to hear her breath.

Oh, the links on this sight vanished. Go figure. I will reload them at a later time.

Never explained the song. It was Adele's battle song. She lost her battle with the same beast. I put it up to honor her...then wham.

Wednesday, March 24, 2004 7:54 AM CST

We had a peaceful night. Our angel slept well between us. She made a sound a couple minutes after 5am and opened her eyes. She was there! I asked if she hurt, and she rubbed her head. I was so concerned about her swallowing the morphine. But she did. She took one sip of milk and that was all. She also removed her pull-up by herself. We took her to the kitchen. She looked at her activity box. I got out her stickers. She would pick up a page of them and just look. Then go to another page.

She said 'yes' and 'uh-huh' a couple times. We tried milk again. She drank about 4 ounces. Her eyes lit up. When she was done, she was done.

She was with us again. She really wasn't there yesterday to speak of. Now, what I do see is brain damage. I am being so very blunt, but I will not lie to myself. As a mother, hope for a miracle never leaves. But my responsibility as a mother involves preparing for her death.

Mark came over. I met him outside so I can smoke. My father called us in. She was having another seizure. It lasted about 30 seconds. It just involved her head and eyes. I told her mommy was here. Mark told her daddy was here. She came out of it. In just two minutes she was sleep again.

Now, why did she come back a bit. Steroids. We put her on dexamethasone suppositories. 4mg per dose. Normally we break into am and pm, but with this it is once a day. HENCE, she received 2 extra mg last night. We still will not up the dosage. So this will be very temporary.

Okay, Lisa came over last night. My sounding board. Jerry suggested I get the tattoo today or tomorrow. I asked Savannah and she took the picture in her hand. Yes, I will be down there when they open. Mom says I am reading way too much. I told her it was time to back off. I want and need you here, but not if you are going to question ANYTHING I do right now. Momma is in ultimate bear mode right now. I have no time for shit. No time for anything but my daughter. I am driven, when I am not holding her, to record where we are right now. A record is what I wanted to find. Details, so I don't panic. I owe my child dignity. Her journey and ending must be with honor. This is my last go around. It must be done right. We are connected in a way I can not explain. Her bond with Jerry I can not explain.

She had a bowel movement this morning. That is a good thing.

I leave in less then an hour. I want to be there when they open.

Tuesday, March 23, 2004 7:05 PM CST

Thanks to Norine, we determined Savannah was having seizures. At midnight I went to the pharmacy and picked up morphine. She still never closed her eyes all night. Everytime I woke and looked at her she was looking around. I don't think she was sleeping because when I would get closer to her face she would move. I cried this morning. I felt sooooo guilty, I could not stay awake with her as she suffered. Sound familiar during this easter season?

She is more stabilized. Still has seizures, but not with the intensity. She is sleeping now, and has for the most part of the day. Her little body is breaking down. She refuses food now and drink.

It's been a cluster F with the drs and hospice. Without going into any detail, we have turned over her care to her pediatrician her in town. This man, her father and I trust more than anyone else. We have a cohession on care now.

Her breathing is regular. This puts me at ease.

I was wrong about the 23rd. Thank you God. Thank you so much. I love being wrong.

I will update tomorrow.

Monday, March 22, 2004 6:44 PM CST

Savannah...oh my baby. She is dying before our eyes. Carlyn and Ricky have taken Cassie out to dinner. Dad should arrive any minute.

I love you Norine.

Savannah. Her right arm is stiff and it shakes. She is scared. I told her the tumor is pressing on a nerve, so she doesn't have to be scared. Mommy is here and I will never leave her. She will be with me always. I did release her. Her eyes stopped the jerky movement and she stared into my eyes. I hope it wasn't too soon, but I need to to it while she could comprehend. I know angels who will meet her on the other side.

For the freaky part...I do hope I am wrong.
Three months ago I drafted a eulogy (sp?) for her funeral. The last line read...Savannah earned her wings on ... It was blank. However, when I read it to Jerry, what came out of my mouth was March 23. I said, where the f*&^ did that come from. I remembered that today. She was fine when I wrote it and read it to her. 24 hours ago never gave us a clue of where we would be at this moment.

The hospital equipment has arrived, hospice has come and gone. I have put the work out NO phone calls or visitors. I know my child. She wants just mommy, Cassie, Jerry, grandma, grandpa, daddy, mom (vicky). Alright, she wants mommy, cassie, and jerry. But when daddy left, she reached up and grabbed his neck.

We worked on one of her last requests. You know she wants mommy to get a unicorn tattoo. Jerry scetched it. I asked if that was what she wanted (she was for the most part unresponsive) she reached up and craddled my cheek. Then he added color. He asked her if that was good. She said NO. The only word she had been able to say all day. He moved the ribbons around and she showed us yes. She picked the picture up. When I asked where it was to go she put her hand on my breast. I said over my heart. she grunted. It shall be done. I want to give her her life, not a damn tattoo. My hands are bound, and that is what she asked for.

She can still swallow, we found out. Grandma is feeding her soup with bread...thick liquids. She is STARVING.

I want to get drunk and hide in a cave. This time I can't. I always set out with good intentions, but never seem to make it. I really want to run. But I want to be NO place other then holding my baby. Right now she is stiff and made it clear she wanted to go to the kitchen. She walked with complete assistance and is in her wheelchair. I have a moment to write while she is preoccupied with food. Don't know how easy it will be to get to the computer.

Please keep checking the past history. I may do many a day or none. Time for Savannah

Monday, March 22, 2004 11:00 AM CST

As on one hour ago, Savannah has been put into hospice. We are at home, because I have refused hospitalization. Thank goodness her father and I are in agreement. We are waiting for hospice to arrive. I am actually considering a dex IV for her. The dr said that it may provide a bit more quality. Right now, I actually agree. They think the tumor is herniating.

As of 8am, she lost the ability to speak. Her right side is paralyzed. Her eyes and head get tremerous, then seem to stabilize a bit. She did not show eye response when the dr put his finger up to her eye. They don't think she can see. I think she can. The er dr doesn't know that the blinking ability can be lost, along with pupil response.

Daddy and Vickie are here. Cassie is home now from school. My mother is here, and my father is on the way.

Love to all of you. Our journey here has about ended.

Lisa m/o Savannah (the most precious daughter anyone can evr have) dpg, almost 17 months past dx

Friday, March 19, 2004 8:02 PM CST

I am scared right now. The girls are with their father. Savannah was walking with assistance when he took her, not needing to have her body held. She calls and says she hasn't been feeling well all day. Mark said she didn't want to eat dinner(the steroid girl?). She told me she can't walk at all. He said her head is shakey. He didn't sound too good either. He said she was watching a movie with Cassie. Understand, Savannah does NOT watch TV, and RARELY does she cuddle with Cassie. My baby is scared. And so am I. I was feeling good about her...really good the last couple days. Then wham. Her counts should be falling now, but that has never physically bothered her. I have lived this way for 17 months now. It sucks.

She received her Love quilt through Make A Child Smile on Wed. It is beautiful. It was an emergency one done for her. Teddy bears. Cassie received an incredible afgan today, crocheted for her because she figured Cassie needed an emergency gift as well. Cassie hasn't seen it yet, but I couldn't wait. I am the most patient person in the world, but something told me to rip it open today. I am so humbled. I want to cry. Where do these angels come from? We have been the recipients of so many touched individuals. This is true religion. These people live it. THIS is what it is all about, not rules set down in individual churches. Can you not see, these people live what we have been taught. Nobody better ever tell me they don't go through the gates first. These people would probably laugh at me, too.

I am scared because I believe in fate. Emergency quilt. Quilt for Cassie. Boxes of gifts, from strangers who we have mutually grown attached with, for the girls birthday. Most remain unopened. Savannah says not today. It is a slow process. Maybe she is stretching it out...making it last. Mom coming down for two weeks. Her keeping her mouth shut about the living arrangements. The inpromptu vacation (Savannah got good enough to go and everything fell into place so easily). The slumber party filled with laughing girls that were so well behaved and I was honored to have them. Work slowing down, so I don't feel like I am cheating them by taking vacation. I pray I am wrong. I have been wrong before. I am so thankful when I am wrong. When my fears get to evaporate.

Two nights ago...the first night with them gone from me. I sat straight up in bed at 2:53. I was terrified...where was Savannah. Jerry Jerry where is Savannah. She wasn't in bed with me. I can not describe the gut wrentching terror I felt at that moment. "Lisa Lisa...she is at her daddy's...she is okay". He held me tight and made it okay. I fell back asleep. It all turned out, but this has been bugging me. One day...one day in the not so distant future, she will be gone forever from my touch. How can anyone comfort me? I felt peace when he said she is with daddy. What about when he can't say that? What about when she is GONE for good...forever...and I will never hold her in my arms again...never feel her caress my face...never hear the passion in her words...the dancing of her eyes...gone from me? My baby, my love, my life. Going to the dark place for a while. It will be okay. It will be temporary.

I wanted this to be a good post. I apologize. Oh man, I have to get going on these other three tattoos she wants. I have to finish the funeral mass. I have to actually talk with their father about arrangements. Tonight I will drown my sorrows. Tomorrow, quite hungover hopefully, I will get a clearer head to continue. The thoughts are coming too fast. I can't keep up with them. I hate when my brain goes on overdrive.

Tuesday, March 16, 2004 2:11 PM CST

We are home. Took an impromptu vacation to St. Louis. Savannah begged me for a vacation during spring break. Daddy gave them to me for the weekend and until Wed evening. Yippee!!! Jerry took off work and off we went.

Hit the zoo, the science center, the art museum, forest park, tower grove park, francis park, jay's international food store, donna's house, chris' house, the 'Hill', Bosnian restaurant, Ted Drewe's, shopping, planetarium, and grandma's several times. All of this (and I am sure more) in just 4 days.

Check this out...in route, Jerry asked me to drive him thru Rolla (where I got my Engr degree). Sure...St. Pat's weekend. Rolla was known nationwide for our St. Pat's celebration. Well...we went to my favorite restaurant there, Alex's pizza (greek restaurant). I am tending to the girls...hear this commotion...and wham!!! GDI alumnae. Wow!!! Eric. Couldn't believe it. I actually didn't call him prior to our last minute trip. Seems like Karma blanketed us once more. Check out the miracles. We hung out and spent the night in Rolla. Then on Fri we are at Jay's international and I hear Lisa? (remember St Louis proper is about 500K) And I run into someone from college and Rocky Horror (well, ya'll don't know about that part of my life). Here I have NO makeup, in sweats, look rough and I keep seeing people I know.

We visited with my closest childhood friends. They were so receptive to Jerry. God love them. Didn't say much about the tattoo, but that is okay. See, it wasn't me either, and where I am today wasn't me either. But I learned last night (long talks driving with sleeping kids) that my life and everything I knew and believed died on 10-29-02. I have had to rebuild a life in a different plane, with a different path, with different rules. I asked if I had become ME oriented? Because why has everything I believed before changed. Everything has become my children oriented. I have a journey to take with a little spitfire. I have a journey to take with a child who can't be without her sissy, and will have to be. What is best for them. What makes them WANT to continue, WANT to fight.

It's funny. Family then friends. How they percieve is so very different. Remember the brain tumor world I know live in? Certain things are common. Divorce (don't have to worry about this) and family disapproval and/or alienation. Family wants to play by the old rules. Guess what? We can't. The board has been changed and we have been blindfolded and it is for life or death. Friends see this. Family seldom does. We cope. Anyway we can. We see life brighter...we see life in a simple giggle...we see life in a small caress. I do miss the days where I was happily content, naive, play by the rules, blind to the truth while attending church. I have always been religious, but it was not until he decided to take my child from me, that my eyes were truely open. He gave us a nightmare, but blessed us with gifts galore to cope, to love, and to live. I see them. I am sure I miss some, afterall I am human. I am thankful. I have been truely blessed. (check out Leilani's site for Yvonne's poem)

Tonight is the slumber party. Gotta call Lisa.

Sunday, March 7, 2004 7:10 PM CST

The birthday party!!!

It was awesome, but short. 50 minutes actually. We had cake and ice cream first. Then the pinata. Now this is the 5th pinata we have had over the years. Normally after 45 minutes the adults just want to take the stick and take care of gutting the suspended beast. But not this time. After two minutes, the poor unicorn got decapitated. It was hilarious. Savannah sat on the steps desending into the garage and watched. She belly laughed. I think we got pictures and video. I will need to see that. The unicorn lost its battle in less then 10 minutes. It made it through one round of kids (we didn't use blindfolds). Savannah was too tired to open presents, so she passed out pencils and had the kids pick one of her stuffed animals. I passed out two artworks to every mother. Then the guests departed. We forgot to pass out their real gifts. But we will do that when they get their thank you notes.

Saturday evening is when she finally started opening her presents. She got through three before she got tired. In fact, as of right now, she still has two to open. But we did write thank you cards as we went along.

Savannah will start half days tomorrow. Either daddy or I will drive the girls to school in the morning, and then the other one will leave at 10am to pick her up at 10:45. I will stay home with her most days after that.

Irene, Cassandra's best friend, spent the weekend with us. She was so good, as always. They somehow cohersed us all into spending Saturday night in Dardanelle, on the farm, with daddy. They had a blast. Mark brought them home this morning. I am exhausted. We all are. But it was a wonderful wonderful weekend. Thank you all for making it so special. A birthday I never thought would happen. We are so very blessed. I am so thankful I can see and feel the warmth, the gifts, the love granted us by touched people.

Another blip from Savannah...
Cassie wanted ham. Savannah had put it in her fridge. I told Cassie to get it out and I told Savannah to chill out. The Savannah says, "At some point in time, you will have to start eating out of YOUR refrigerator." She stole the good stuff out of mine and put it in hers. I heard it this morning when I went to get breakfast sandwiches out of my freezer (I make a bunch in advance, so we have a hot breakfast daily), and they were all gone. Yeah, they all switched mysteriously. Then I get berated for removing them without her permission. How many was I taking? Who were they for? Ask next time, or I'll get you with the wooden spoon! For those who don't know...welcome to the world of steroids. I have lived through MUCH MUCH worse. This is mild and quite funny.

Oh, on another note...Easter season is upon us. This means it is Jesus Christ Superstar season. The girls and I go crazy, between the origional and the 2000 version. (the 2000 version is more powerful, I think) The older girls were watching the origional earlier, and Savannah told me she wanted to sing the duet with me. This is Mary Magdeline and Peter singing, Living Without You. Jerry taped us singing. We are Andrew Lloyd Weber/Tim Rice freaks.

Oh, Jerry is designing a possible new tattoo in honor of Savannah for me. Yeah, I am right there. However, Savannah interceded. I could have a dragonfly, but I MUST have a unicorn on my arm first. This child is going to fill me. For those who do not have a dying child in their house, they will think I am crazy allowing my child to tell me what to do. Ruling the roost, so to speak. Well, whatever. My baby will forever be seven, and she will be immortalized (at least until my time here is up). If you walk in my shoes, you understand. In fact, they do (amazing isn't it...I really am glad I am not crazy) because I am have an awful lot to do. Good night to all, and God bless.

Friday, March 5, 2004 5:47 AM CST

Gotta share a story from yesterday. I was in Alma at a Kiwanis meeting. My cell phone goes off. It is Savannah. It was not an emergency...told her I would call her back...then I told her to hang up. She did and I went back to my meeting. Well, Jerry informs me of the following that happened when she hung up. She states out loud showing her displeasure, "Well, that was pleasant". Jerry asked her what was pleasant, honey. "You ought to know, stupidhead". Okay she is six. I said she speaks as an adult. But what is cracking my up is that she has the sarcasim as an adult.

I will enter more later.

Okay, just finished up my work. Will compile everything later. Need a break. Savannah has been gold today. She sat on one side of the table and did her homework, made thank you cards, and colored stickers.

Cassie is having a weekendlong guest. And the big party is tomorrow. I can't wait. We still have so much preparation to do. Maybe Cassie and her friend will help instead of being tornadoes. I will have to make sure the video camera is in working order. I will have to delegate to mothers. It really is a whole lot more fun that way.

I am finally back on line with my pedibt support group. I have missed them so much. I try to steal away in the evenings to catch up or post. One of my families is back.

Tried to set up the fridge. A part broke off. Jerry will try to superglue it. I really wanted her to be excited enough, so she would go to the grocery store to fill it. Will have to wait.

Have a wonderful weekend to all. I will post about the party.

Wednesday, March 3, 2004 2:10 PM CST

Wed already. My email is back
m-lhurley@centurytel.net
Now I just have to finish going through my 1100 emails. Monday daddy watched Savannah. He said she wasn't doing real good. I was not in the best shape for the rest of the day. I really think it is a matter of perspective. She can't walk by herself anymore. Her right eye is moving in towards her nose. She sees double occassionally. Mentally she is there, though. And her personality is still intact. No more dex, I keep saying. I do not want to lose my inner little girl.

I wonder if, since I am so focused, what is freaking everyone else out doesn't bother me. My mom actually asked when she became so bad? What? She is not bad, not yet. Several people have told me that over the past week. You will know when I start losing it over what is going on. I am happy and I am at peace. My daughter is here, she can communicate, and she breathes love. She lives for me as I do her. We not only love eachother but are inlove with eachother. I will be lost, but that is for the future, not the present.

Just got her weekly counts
ANC 16.2(from very low to very high)
PLT 425 (from acutely low to moderately high)
White Blood Cell 23.2 (this makes me nervous)
She is finishing up her antibiotics, her cough is quite a bit better and she has very high WBC count.

We have a unicorn cake ordered for the party. This will be the first actual store bought cake we have ever had (well, last year she wanted an ice cream cake) Both are out of my creative realm. Cupcakes were made and eaten for Cassie. Cupcakes are made and need to be put in the freezer for Savannah's class next week. And cookies galore we made yesterday for her class. The kids brings snacks the week of their birthday for the whole week. Thank goodness for cookie dough fundraisers.

Cassie had a good birthday yesterday. She wanted to lose her ninth tooth on her ninth birthday. Guess what, she did!!! I would have thought it wasn't wiggly enough yet. Such a simple prayer answered. She glowed through a mouth full of blood. And she was visited by the most powerful fairy of all last night (this is according to The Fairy Oddparents). I just think this is way cool. Don't you see the miracles, too?

Thank you Wendy (Noelle's mommy) for the presents. Cassie already made me a dragonfly to hang from my purse. She took it with her to work on the bus. Seldom do I see her attack something with such vigor.

I will keep this here for a few days...

here is the birthday schedule
cassie 3-2-95
savannah 3-9-97
parties to be on the same day 3-6-04

this is savannah's po box
PO Box 144
Russellville, Ar 72811

home address
104 Cambridge Ct.
Russellville, AR 72802

Sunday, February 29, 2004 4:24 PM CST

I went into the office today. Got a ton done. Listened to early Eminem then Joe Satriani, real loud. I probably got two days worth done...no interuptions. I just finished wrapping the girls presents. Next is cupcakes for Cassie.

The girls have been wanting 'dates' with Jerry. I think we have come up with a plan. Each week they will have him for one evening to themselves. Savannah wants to get out the easels and paint, and Cassie wants to go to dinner for the next round. Personally, I like that they are asking for bonding time. It is helpful for Cassie in dealing with what is transpiring. She has her special night away whether is is gone from the house or just in the other room.

Jerry got the vent fixed on the stove, mowed, started bean soup, and now went to the store. We have a busy night ahead of us, too. No rest for the weary...you just switch projects.

I will keep this here for a few days...

here is the birthday schedule
cassie 3-2-95
savannah 3-9-97
parties to be on the same day 3-6-04

my email is nonexistance....so this is savannah's po box
PO Box 144
Russellville, Ar 72811

home address
104 Cambridge Ct.
Russellville, AR 72802

Saturday, February 28, 2004 9:17 PM CST

here is the birthday schedule
cassie 3-2-95
savannah 3-9-97
parties to be on the same day 3-6-04

my email is nonexistance....so this is savannah's po box
PO Box 144
Russellville, Ar 72811

home address
104 Cambridge Ct.
Russellville, AR 72802

Girls are with daddy. talked to them a couple times today. they are doing fine but wanting to know when they are coming home.

got a lot of birthday shopping done today on the way back from OK. tommorrow I work at the office. we are going to the club tonight with some friends. I have been listening to the tape of the first show I played with mid 70's music. For those who don't know me from 20 yrs ago...yeah...i was a dj. I can play anything minus country (and i got a stomach full of that last night).I have been getting ready, drinking, remembering, and forgetting. Lots of Dead, the band, yes, jonathon edwards, brewer and shipley, etc.

Jerry is moving in. I am at so much peace. This is NOT your traditional shack-up. College life is long over. I have fought and prayed and analyzed and prayed. I have not slept, made myself sick, anguished over this decision. I resolved myself to the fact this gentle creature was sent. God works in mysterious ways. The worst time for marriage is in a or due to a crisis situation. We think Savannah will give up, if we marry... she is scared things will change...please don't change... make him stay. Listen mommy, to the angel you have. she speaks.

Friday, February 27, 2004 4:59 PM CST

Savannah and I had a very exciting day. We left at 7am and drove to Fort Smith. She was a featured guest on a Make A Wish radio-thon. Well, it was a country station. I had to get over that. We had fun. Got pictures, too. If I have time I will figure out this scanner and hopefully upload it. I know, the tattoo. Well, I just got more pictures developed of it and, oh my God, my nipple is showing. I freaked, so they can't be put here. That man can do alot but he can't take a picture worth a crap.

Driving home she talked and talked. She wanted to get her fridge. BUT we had to wait for Jerry to come home for lunch. How many minutes until he is here? Hahahaha. After lunch we went to Lowe's. She walked and walked in there. She picked out her fridge and I got it for her. I told her that she is the only child in Arkansas who has ever asked for their very own refrigerator for their seventh birthday, and got it to boot. Let's be honest here...whatever she wants she will get. (the Disney cruise may be out...don't think she is capable of that)

They just left with daddy. Upon leaving, I hear Cassie say, I love you Jerry. (twice) Hmmmmm, they are hooked.

Savannah walked more today then she has all week long combined. She talked up a storm. Her eyes were still doing their own thing, but they were closer to matching. I sent eye patches with daddy anyway.

I am in a good place today.

Thursday, February 26, 2004 1:57 PM CST

Savannah and I have been working nonstop since about 9 this morning. I am stiff...not used to not moving around. Her cough is still worrisome, but there is nothing I can really do except wait for the Biaxin to work. Her right eye is off today. That's normally the eye she looks at you with. It is the left that watches today. I asked if she was seeing okay. She says yes. Personally I don't see how, but children have such and ability to adapt. I keep asking her if she wants to try her patch, but she says, no thanks.

Yesterday on the way to Morrilton, my SUV started shaking all over. Tires, wheel bearings, who knows. It is in the shop right now. They have got to get it fixed today because tomorrow is the big event. Savannah and I go to Fort Smith for a Make A Wish radiothon in the morning. I wish Jerry and Cassie could go. Both would be as proud of her as momma.

Since I have no email right now...this is to M Elton. Your radio station plays much better music than ours. I am very familiar with the song. Thank you.

I ask Savannah what she wants in her fridge. I don't know she says. Cheese, I ask...maybe, pickles...maybe, meat...maybe. So who knows. She has a date planned with Jerry tonight. Cassie and momma aren't invited. She wants to go to Ryans and bring the dinner home.

We got a package from Celeste. Savannah said she didn't want to open it yet. She is busy...has to finish coloring all her stickers first. The steroid induced obsessiveness.

I actually got Savannah to watch a movie, so I need to take this time to work.

Wednesday, February 25, 2004 8:31 AM CST

I know I just posted last night. If you are interested in it, just go to past journal entries.

Savannah woke up this morning with double vision. Her eye had been wandering. I always ask her how her vision is and she has said fine. Today she said she saw two of everything. Like your eyes. I have two eyes, savannah. No two sets of eyes mommy. okay, i believe her. Jerry will go at lunch and get an eye patch for her. There really is nothing you can do. This is just tumor progression. Hopefully, it will be intermittant for a while.

she still wants to go shopping for her own refrigerator. Go figure, but that is what she wants for her birthday, so she can have it. hopefully, this respitory infection will get kicked in the butt, so we can go early next week.

I think we will start her next round of chemo on Friday.

Tuesday, February 24, 2004 7:55 PM CST

Tues afternoon counts
ANC 1600
platelets 159
Breath Lisa what a relief BUT the cough, the damn cough.

Millard Henry was sooooo crowded. I told the receptionist (gotta love a small town...this is lisa hurley, savannah's mom, and she knows the rest...out of the way for my little one)what was going on. Bring her in and Dr. Harrison WILL see her. This cough has been going on for a month now. She has been checked by a different pediatrician, a radiaologist, and several nurses. same thing...lungs clear. He listened and listened. hears nothing but orders xrays anyway...there are some infections,

Now robitussin dm and benedril wasn't really touching this cough. How many of you know how many of these kids die? I have a right to freak. Alright, we aren't this far yet. But!!! Anyway, the xray showed congestion still in her sinuses and spattering of stuff in her lungs. So a potent antibiotic to clear it. Afterall, she is cleared for chemo as far as her counts go now. Well, she has to be a little better first. Dr. Harrison agrees. Thank God Mark and I trust him completely. After he sees one on our kids, I can sleep at night. Poor guy, he had a room full...savannah, cassie, me, jerry, mark, and vickie. And cassie bouncing of the walls during all of this. My sweet good cassie.

Her counts clear her for school, but the cough tells me no. I will stay home with her tomorrow.

Lisa , it was great talking to you last night. You are not crazy and neither is your situation. We dealt with that while at the dr today. I will cry like a baby if that pedi dr ever left. I know what you would do.

My phone won't stop ringing tonight. Savannah suddenly got painful cramps on her right side. Don't have a clue of what that is from. We just got home. Anyway, Jerry is laying down with her and she is quiet now...they are watching sleeping beauty just 10 ft from me. I like the computer in the bedroom.

You know something...In the middle of this nightmare I live, I am so blessed...people reach out and help. from picking up my work to posting from their hearts.

jerry bought us a very nice bottle of wine for our anniversary. i sit at the computer (understand...I disgustingly nurse my alcohol) and he is sitting with savannah. what a way to celebrate. seriously, this is the way! after all, we have an angel among us.

it has been a very long day. i got up at 4 and began. it is now 9 and bedtime. goodnight to all. another day of being scared shitless and drowned in love. we are truely granted gifts to get us through until tomorrow. pleasant dreams to all. my babies are with me.

Saturday, February 21, 2004 6:25 PM CST

Savannah's counts
ANC 100
Platelets 54
White blood cell 2.1
Yes, I am freaking out. She is with daddy not me this weekend. I almost didn't go to my Kiwanis conference in Branson today because of it. I already had decided to drive thru the mountains in the early am so I can be at home longer in case. I am kicking myself. Friday morning I noticed she wasn't quite herself. I had a manditory meeting at 8am and I needed to prepare to stay home early next week with her. I sent her to school. AND SHE HAS NO IMMUNE SYSTEM. When we got the results I could have cried. They drove off with daddy for the weekend and I just shook. Jerry had a hot bubble bath drawn for me when I got home. I swear, this man takes my breath away.

Now, I believe there is nothing more rude than cell phone in eating establishments, meetings, church, etc. I always turn mine off. (like anyone calls anyway because few people know the number). Mine goes off in the middle of the breakout session. Yes, I was one of those people you want to shoot. It was Mark's number. Nobody would answer, so I hung up. I shook. I was scared. I thought...he will call back if it is an emergency. He knows where I am at. He didn't. At the end of the session, I called. It was just Savannah. She said she heard the men talking and decided to listen...didn't want to interupt me. Little twirp. She sounded good, so good. But she asked right away...how many days until I come home? That always rips my heart out. The anger surges. Yeah, I have still not gotten over the anger I have about being forced to break up a family. I never had time. I was so relieved that she was okay that I stood outside and cried for 15 minutes. I was angry for overreacting, for beating myself up for getting scared, for going further than 30 miles from home. I called Jerry. Come pick me up please. I have to go home. So just remember...next time someone is rude with a cell phone...they may be waiting on a life or death call.

Jerry is going to start working locally. Like 3 blocks away. He doesn't want to be far from the little one. He may be able to work something out to, so he can watch Savannah at times. I am elated.

I just found out we have a 6 month anniversary today. Oh how time flies. For being an angry, terrified, in control, lost control woman...I can't get the smile off my face. I couldn't be this sane under the circumstances if it wasn't for this gentle loving man. Kelley Clarkson could be singing about me. Is she?

Tuesday, February 17, 2004 7:08 PM CST

My computer decided to completely go kaput. It is up and running now. Thanks to a multitalented gray haired prince. I even have the new scanner hooked up. Like I know how to work one.
MRI…the scan was fairly stable. Growth was minimal. The pons seemed a bit brighter to me. The hydrocephalus is worse. However she is not showing symptoms. I am watching closely. I have also reduced her steroids to 3.5 mg/day. Hopefully she won’t have the backlash as she did with the drop to 3. But this time I am once again in control. She has really seemed to get better over the last couple weeks. This is what prompted my reduction.
I told my mom about the tattoo while she was visiting my sister. She needed to somewhat prepare herself. Oh my, I got an a## chewing with yelling and all. Blah blah…respect your body…blah blah…biker…blah blah…I knew you would do this next…blah blah…down a path. Well, I got over it. I am still waiting to regret having my ears double pierced when I was 18. I heard the same thing then. I still wear two sets of earrings.
The weekend visit was pleasant. She didn’t ask to see it and I didn’t volunteer to show it.
Savannah’s counts are falling now. ANC 1100, platelets 55, white blood cell 2.1. Hopefully, she will bottom out this week. Looks like I may stay home later on this week. My beautiful little girl.
Well, Cassie was diagnosed ADHD today. All right, like anyone out there who knows Cassie hadn’t figured that one out. I just didn’t think it was severe enough to warrant administering an amphetamine to her. I think all of us are on the very conservative side. I have known this day was coming when she was 6 days old. I learned stuff today that was opposite of what I personally believed. I like being wrong sometimes.
BIRTHDAYS ARE COMING!!!!
I honestly never thought Savannah would make it to age 7. We are almost 16 months past diagnosis. 50% make it to one year. 30% make it to 18 months. March 6th is what we have decided. She wants it at home with a unicorn piñata. Cassie wants a sleepover. We will do it that night after Savannah’s party. We will party until school on Monday. Now you know I am nuts. Well, probably any mother of a soon to be 9yr old and 7yr old would be, and I bet it only gets worse.

Sunday, February 8, 2004 2:14 PM CST

We are all plugging and chugging along. Savannah did not have a UTI. Dr figured just an iritated urethra. He put her on antibiotics for her sinus infection. Cassie was dx with a virus. She has been feeling better but she has diahrea. Mommy is getting a sinus infection. It's creeping into my lungs. At least it is the weekend.

Their father offered to take the girls after their dr appointment fi and keep them over nite (not his weekend either). All right, I am amazed, but I have had to stay home all week. I worked at the office to late at night to catch up some hours. Sat, Cassie and Jerry went on a date to the movies. Savannah worked on projects and I did office work. Today they are fishing. Savannah is coloring and I have been working. This stuff is biting my butt, too. The girls fathers new wife called. He is in the hospital again with his heart. They have to change the dosage of his meds. Been there done that several times. But please pray for him. If he will quit the chewing tobacco and loss 20lbs the fib will be minimized. At least he can't blame his addictions on me anymore.

The tattoo is healing nicely. It has started to peel. I have to leave it alone. I will. It means too much. I have heard these are addictive. Well, I guess I have an addictive personality because I understand this. The pain, well it hurt a little, but it was nothing compared to what our little ones go thru. And it was worth it.

Mom and dad come for a long weekend. They will freak. They will also have to get over it. I hate the dark cloud looming above. Parental disapproval. Can never seem to be too old for this not to affect you.

I have had pictures taken. They were supposed to have been sent to me, but my email kicks me offline everytime it tries to get mail. Hopefully, I can get it uploaded soon.

Thursday, February 5, 2004 5:22 PM CST

It is here. A permanent portrait of my daughter. So cool. In less than 24hrs, I have seen people awe struck, taken back, dislike. Way cool.

Sleet yesterday. I was home with Savannah. The ice began around 3pm and would not let up. By 5pm I figured today was not in the cards for the tattoo, so I opened a beer and actually ate a bite. At 5:25 I get a call, come now. Well, what the heck. Didn't feel uncomfortable about driving on 1 inch of sleet.

I have learned to go with the flow. I really do believe God provides. You can't be stupid about it though. This artist happens to be an aclaimed portrait tattooist. Maybe the only one in the state. Now he just happens to live here AND I just happen to walk in requesting what he has won awards for. I tell ya. Intervention. Little pushes. It just means THIS IS RIGHT! It is beautiful. Absolutely beautiful. Anyone got a digital camera I can borrow, so I can get it on the site? Oh, the picture we chose actually has Savannah wearing Cassie's braclet (it has cassie spelled out and you can see it). So I actually have both daughters on my arm.

Started out at work today after a late start. Apparently it was only real bad on my block. School called. Cassie is running a fever. I just asked them to get Savannah, too, so I don't have to go back later. I think Savannah may have a bladder infection. I guess I'll be home tomorrow. I will try to get some work done. I brought a bunch home.

Cassie's fever is at 103.1 now. Time to switch to tylenol from motrin. Savannah is downstairs with Jerry. I tell you a godsend. I have gotten quite a bit done.

Back to work, tending to ill children, and rescuing our prince. Time to be a woman!!! (I know the ladies will like that)

Monday, February 2, 2004 9:00 PM CST

Thank you everyone for the encouraging words. We lost Steve last week. Please pray for him and his devoted loving wife Kathy. She was the one who encouraged me to join my pedibt group. Now of all those who reached out in the first couple months to me. Who knew and understood the monster. Who gave me strength to fight...they are all now gone. It puts a perspective on this type of cancer. I have made new friends on this journey. I am so sorry they will have to feel death from others as they muddle their way through. Steve is at peace. Kathy, oh Kathy. You have touched my heart and I don't know how to reach out for you. Norine the same. My sweet little Ashley. I hurt everyday. Yet I know I must tend to my own. They must tend to their grief. I do not want to subject them to anymore pain.

Trust your insticts. Time is short. We haven't much longer. I still pray God will grant us my wish.

I just picked up the girls, they have been with daddy this weekend. Savannah just seems more symptomatic. Her left eye droops so much. She is larger. I had to pull her weight up the stairs instead of just balancing her. But she seems even more articulate than before. She has been talking my ear off. She made me a special treat for dinner. Those who personally know me know I eat constantly until about 2 pm. Then I just stop. I still stay at the dinner table with them, but I just can't deny my child.

She took her chemo so good last week. I am so proud of her. Please kick in chemo. MRI jitters begin. Honestly, it won't tell me anything that I do not know. Progression. Her MRI is a week from tomorrow. Her father volunteered to take her. I need to talk to him shortly about NOT allowing the steroids to be increased. I hope he is with me on that. He is still the one person that can intimidate me.

Off the Savannah note. There are two things that are unattractive. Fear and jealousy. I got to witness both of these Friday. Different situations. I don't tolerate either well. How the hell can someone be scared of me? Blows my mind.

I guess this makes this public knowledge now. The TATTOO. Okay freak everyone!!! Take a deep breath. Now get over it. A memorial, if you will, imprinted in ink on the body that brought her to life. I am having her portrait done on my shoulder. The cap to be the forehead, flowing down my bicep. So much for wearing sleeveless shirts to work in the summer. But I need her. I need her not only with me, I need her on me. It is being sketched out now. I will have it done Wed. nite, God willing. I thought I would be uncomfortable walking into a tattoo parlor. But I was never more at ease. So I know this is right. My children are comfortable with it.

My girls are home now. A family again. And they start...Jerry this...Jerry that...Jerry I need you...Jerry will you do this for me...Jerry will you help me...Jerry...Jerry...Jerry. Poor man. He must love it. He comes back every evening.

I had a wonderful weekend. At times I even forgot the cancer. Yesterday afternoon I put on the Grateful Dead. I danced. I danced. I nursed beers and I danced. CD after CD. I got out pictures from the Indi concert. Yeah, Mary...there you were. I know you are laughing. Do you know everyone has the same look? I didn't wear tie dye. Wore them every other day, except to a concert. Go figure. I was a rebel then. And haven't changed. Still conservative, though. Now put that in your milkshake. I was free last night. I felt joy, love, peace, and comfort. I was with a man who didn't critize my dancing (gotta free form to the dead, ya'll know that). He never said anything about my belting out tune after tune. In fact he joined me. Freedom to be myself in my world of torture. I really do think he was sent to me.

Time to be with my girls.

Tuesday, January 27, 2004 5:26 PM CST

Savannah had day 1 of chemo last night. It went great. I am so proud of her. She doesn't complain at all about medicine taking. She even told me...I am much better at this then my cousin. 'Tis true. PT and OT were hard on her. Running into walls and so fatigued. Progression continues. My fingers stay crossed and hope flows that the chemo has a chance to kick some booty.

Tried calling my sister last night. To no avail. Did talk to my brother. The constant child interuptions didn't allow a deep conversation, though. I have a lifetime for that, but I don't with my child.

I have some inner battling to do and bullshit keeps piling up around me. This is it...Savannah's growth is in her cerebellum not her pons. This should be accessable in surgery...maybe. This doesn't change the prognosis with the pons. It just still lies dormant. The monster will still awaken. I can go from here and solicite surgery opinions. This may buy her time. It may also kill her. We would have to leave the state for this. My ultimate goal, no matter what the timeframe was, have her in her house in my bed when the angels claim her. I want the peace, comfort, and calm that she wishes for. I risk that. I fight my own selfishness as a mother. I WANT HER TO LIVE! But at what cost to Savannah? If this was the only place the cancer was, my decision would be easy. But the cancer still lives deep in her brainstem and will ultimately take her life at a very young age. Could be a month...could be a year...but it will kill her. A surgery may get it out of her cerebellum. But in doing so it may also awaken the beast. How many times have we heard you mess with a cancer...it grows like wildfire? Do I chance this. Part of me screams yes, I have to as a parent. Part of me screams, what the hell are you going to put your child through you selfish bitch. Yeah, obviously I am very hard on myself.

I have been dealing with this for a month. But didn't pursue it. I may have an avenue now and time for me to put my boots on.

I am the same person yet very different. Love, life, and cohessiveness are all important now. I have learned that children see things more clearly then we do. They see what is truly important. Adults may say they don't understand. No, I beg to differ, they do. We have lost the ability. All they need and want are the basics. Love, time, peace, comfort, joy, and to feel safe. I can see now. Are any one of you reading this happy? Truly happy in almost all aspects of your life? Like a child? My daughter is dying yet she is a happy little girl. Yet some around me threaten that. They threaten the well being of my daughters. I am about ready to lash out. I have fought for my daughters quantity of life, I have fought for her quality of life, she has found love and happiness in the mitst of this disease and I WILL fight for her to keep that. For all who read and follow. I am ready to fight again. I will NOT ALLOW NEGATIVITY IN MY HOME. Nobody will ruin or attempt to ruin what she has found. Does everyone understand?

We have a circle which has both shrunk and grown of those that love, accept, and embrace. I cry...i really do...for the gifts we have been given. It just sucks to have it come through a pediatric cancer. It takes a special person...the best kind...to talk to a dying child...to play with a dying child...to love a dying child. My tears tonight are for you. You all know who you are. Thank you from my soul.

Monday, January 26, 2004 5:20 AM CST

Good Morning. The week slowly got better. Savannah's ANC was over 2100 on Thursday, so chemo has been ordered. Last night she was even singing.

Sat got to spend a wonderful evening out with Jennifer and Lisa celebrating the big 40. Happy Birthday! I still say it only gets better!!! And I don't need to know how you like your present. Fri night Mark had the children. I worked late then headed out to dance. I had a wonderful crazy time on the dance floor. Didn't accidentally hit someone in the head swinging my arms this time. I was DD.

I talked with my friend Carol Sat afternoon, Sydney's mom. I love talking to her. We can actually talk about our daughters upcoming deaths without fear that someone will think we have given up hope. They seem to be at the same level tight now. I told her I wish Celeste, Sydney, and Savannah can all get together. They would be triplets. Approximately the sames ages, same steroid features, same obsessions. Yeah, us moms would be triplets, too. Sydney's MRI was not good. I have written that some days I never get makeup on and for some reason those days I cry. Well, Sat never had time prior to the party to get my face on and sure enough, bawled the whole drive there. It is a good thing, to experience grief. Flush your body with tears. Anyway, I think Sydney's site is up. www.caringbridge.org/tx/sydney. I am going to check it out real quick now.

Tuesday, January 20, 2004 12:20 AM CST

What a week! Last Monday I took Savannah to her kidney dr. NO MORE KIDNEY STONES. Yeah!!! However, we will keep her on her meds because she is back on the steroids that created them a year ago. Tuesday her father took her to clinic. Savannah's counts and platelets bottomed out. No chemo allowed. I choose to keep her at home for the rest of the week. Thur I had them rechecked. Platelets were up. ANC at 308. I was so relieved I kept her at home. We were sooooooo busy. Mommy and Bundle time. TIME. I couldn't get any work done. Oh well, I have to use my vacation for something. Is my daughter not worth it? Of course. I kept her on miralax. And her back pain subsided. She colored, put stickers in books, made recipes, made grocery lists, made window art...she worn me OUT. She would get up at 4:20 and go to bed at 10. No nap. By Friday I just wanted to cry, I was so tired. I went ahead and kept Savannah with me so her father and his new wife could watch Cassie cheer. Thought they would be here no later than 7. BUT NOOOOOO, they stayed for ALL the games. I had to cancel my plans. Went to bed and slept all weekend.

The tumor is progressing. I see her eye starting to move in. Others can see it now, too. This dreaded monster! Her counts still aren't high enough for another round. You get panicy for the chemo and at the same time you want to just say ENOUGH. Give her honor in her death.

I think about the soldiers that for eons have gone into battle knowing their lives will end on the battlefield. They still go. HONOR. It is what so much of our generation has lost. To die with honor and dignity. I have been thinking about that alot. I want that for my daughter. She has fought against a beast that ALWAYS wins. She has beaten the odds at time and at quality. I want more for her. Of course, I am very selfish when it comes to my children. What good parent isn't? There will always be a heart filled with hope until after the moment she gets her wings.

I will do my best not to allow anyone to increase the steroids anymore. I hope I don't weanie out. I love my baby so much. But decadron is a miserable existance for her. I am ready to fight. I will continue to fight for her life, but at the same time I will fight valiantly for her death. I just want what is best for my youngest daughter.

I want the days with her to be many. Will she make it to 7? Maybe just past. 'Barely just turned seven...so who will hold her hand when she crosses the streets of heaven?'

Savannah beckons and I will see to my little spitfire.

I am back...I had to share a dream. Savannah, Cassie, my mother , and myself were on a cruise ship (this was Savannah's first choice for MAW). C and mom in one room...S and me in another. We hung out...played...were just together. S runs our in the front by herself. I tell her to wait. She doesn't. I am waiting for C and mom. I am torn. A woman walks in and says the little red head just died. How, I asked? She is already dead. What? How did I know she was already dead? She can't die twice. But I have been with her. The woman says she is sitting right over there on the love seat. There is no one there, but I go and kneel down. I lay my head on an invisible lap. I stroke her invisible thighs. I can feel her hands cradle my face as I WEEP AND WEEP AND WEEP. Then C and mom come. I ask about Savannah. Mom looks at me and says you buried her, baby. I called her father and asked him. Savannah died. She is not with you. Oh God, PLEASE let me be with her again, just once, I beg. I hear, 'mommy'. Look up and she is in her favorite peach dress. All skinny, pre-steroids. Real! I run and hold her...and laugh and cry. She was real and she came back. She will ALWAYS be with me. I felt her skin, I smelled her hair, I absorbed as much as I could take in...then i awoke.

Friday, January 9, 2004 12:44 AM CST

I’m so tired of being here
Suppressed by all my childhood fears
And if you have to leave
I wish that you would just leave
Because your presence still lingers here
And it won’t leave me alone

These wounds won’t seem to heal
This pain is just too real
There’s just too much that time cannot erase

When you cried I’d wipe away all of your tears
When you’d scream I’d fight away all of your fears
And I’ve held your hand for all of these years
But you still have all of me

You used to captivate me
By your resonating light
But now I’m bound by the life you’ve left behind
Your face it haunts my once pleasant dreams
Your voice it chased away all the sanity in me

These wounds won’t seem to heal
This pain is just too real
There’s just too much that time cannot erase

When you cried I’d wipe away all of your tears
When you’d scream I’d fight away all of your fears
And I’ve held your hand through all of these years
But you still have all of me

I’ve tried so hard to tell myself that you’re gone
And though you’re still with me
I’ve been alone all along

My Immortal – Evanescence

Tuesday when Savannah got off the bus I choked. She said mommy I don't feel good. Well, she didn't look good either. She could barely walk. Actually, she walked by stumbling from furniture piece to furniture piece. She layed down when she got home. She didn't move all night. She slept on and off. I called the hospital at 6:45 am. Up the steroids back to 4mg. Give it a couple days. She has somewhat stabilized. She went to school today. Still very unsteady, but she wanted to go.

I think the days of school are now numbered. I am watching my youngest child slowly slip away. Her body's abilities stripped away in front of us. I pray for swiftness if she can't have a cure. I love her so much. I don't want my little lover baby to go, but I don't want to see her quality of life nonexistant. And the funny thing is, I know NOTHING yet. Wed morn, I could barely make the phone call. I was shaking like a leaf. So bad, I had difficulty hitting the buttons on the phone. She wouldn't get up...barely responsive. But then around 8am she just woke up.

Gotta go.

Tuesday, January 6, 2004 12:24 AM CST

It has been soooooooo long. My computer will not let me access the site. So I am at lunch, borrowing someones.

Alright...update...Savannah is at 50lbs now. The weight is coming on so fast. She is down to 3mg/day. Her back is starting to hurt her bad...kidney stones are returning. The tumor symptoms are holding steady, but the steroids symptoms are coming in full force. The personality flatness has subsided by dropping from 4 to 3/day. But BOY is she obsessive. Food food food and lists for recipes.

I've been SICK the last 2 weeks. Missed out on New Years eve, but made up for it Fri nite in Memphis. Won't expound on that. I wanted to visit St. Jude's. They wouldn't let us in except to the memorial. My lip still hurt yesterday from fighting back the tears. They had a display showing percentages of pedi cancer survivors from 20yrs ago vs. today. Pontine gliomas were not listed. As the dr from St Jude's told me...this is the ONLY cancer that God has not given us the insight to cure, let alone slow down.

It's funny, since I posted My Immortal, it has been getting quite a bit of airplay. I have been wanting to change the song but no access.

Cassie is having problems. Literally bouncing off walls, driving Mark and Vickie crazy. I have always been more tolerant and Jerry was just like that as a child. I hate the idea of medicating her, but I may have to get her tested. She made her first B+. Alright I may be overreacting here.

Please Please Please link to Ashley's site. I am still in shock. God claimed another angel. My beautiful little blond. I realized all the links on this page are deceased. It breaks my heart, but it is the nature of this beast. We have lost several pedi bts since Sept. It seems so odd. But there have been several new pontine glioma additions to my pedibt group. Hopefully, this is due to internet access as opposed to an increase in cases.

Christmas was wonderful. It was our best ever. Chemo angels filled our home with gifts. Gotta go back to work. Love to you all.

Monday, December 22, 2003 10:00 AM CST

march 2 cassie's birthday picnic
that was savannah

-----------------------------------------------------------
To whom it may concern,

As I sit here pondering the life I've lived, there is a 6yr old girl who has opened my eyes to life as well as death.

Her name is Savannah Hurley. She has cancer within her brainstem. Hence it is inoperable.

I first met her while doing a painting of her older sister and her. In the past three months I've become quite close to the entire family. For the first time in my 40+ years I have felt and seen the love only an innocent child of God can give to someone.

I know that my time with her will be short, but the gift she has given me will not die with her. She gave me the gift of love eternal. For when she joins the angels, I'll have her love from heaven above.

Her painter eternally,
Jerry

-----------------------------------------------------------
The song is for Pam and Paula...best friends. I am not even at the point yet of the ultimate loss. But my loss is immense. We live it every day. All these songs have dual meanings for me. I can see through my child's eyes. I can view my losses as well.

My children are with me once more. And I feel like crap. Cold and achy. No fever yet. I have to go to the field tomorrow, too.

Savannah is beaconing me and Cassie wants to get on the intenet, so I will bid you all adieu.

Sunday, December 21, 2003 3:16 PM CST

Catch me as I fall
Say you’re here and it’s over now
Speaking to the atmosphere
No one’s here and I fall into myself
This truth drives me into madness
I know I can stop the pain if I will it all away

Don’t turn away
Don’t give in to the pain
Don’t try to hide
Though they’re screaming your name
Don’t close your eyes
God knows what lies behind them
Don’t turn out the light
Never sleep never die

I’m frightened by what I see
But somehow I know that there’s much more to come
Immobilized by my fear
And soon to be blinded by tears
I can stop the pain if I will it all away

Don’t turn away
Don’t give in to the pain
Don’t try to hide
Though they’re screaming your name
Don’t close your eyes
God knows what lies behind them
Don’t turn out the light
Never sleep never die

Fallen Angels at my feet
Whispering voices at my ear
Death before my eyes
Lying next to me I fear
She beckons me shall I give in
Upon my end shall I begin
Forsaking all I’ve fallen for I rise to meet the end

Whisper - Evanescence

I miss my babies. They are with daddy in Dardanelle this weekend. Savannah started her chemo on Friday night. I did not like daddy administering it. He is not the best at medicine giving, to say the least. Apparently she swallowed her eight capsules per night just fine. No adverse side effects yet. I know, that should come later.

I have decided to move the computer and printer downstairs into my bedroom. I bought a computer desk today. Jerry is putting it together as I type. Due to Savannah's 'off balance', I know longer want her upstairs. She can play on the computer now, until the double vision returns. Hey, anyone know, will she get back her same symptoms or will she just get others? Plus I can work on it while she is with me.

The people at the Jacksonville office had a collection for Savannah, Cassie, and I. It was very gracious of them. It was used on the table and new printer I just bought. This will help so much in the months ahead. It will also help me to update more frequently.

Prior to the dex...I see her right eye shifting in. No one else can see it, not even her onc. But it is there. She was having difficulty urinating. It just wouldn't come out. And of course the ataxia and loss of motor skills.The steroids have either eliminated or alleviated these. Now the dex problems...she told me her belly is as plump as Santa's. Immediately she got constipated. She is name calling and just plain mean. She hasn't started cussing yet. But it will come. God, I hope we can get her off the dex. Two months may fill her kidneys up with stones again. I know so well how decadron works. The symptoms are relieved. This is a good thing. Until the side effects start coming stripping away the little quality of life they have remaining. And it will not save her life, nor will it really extend it.

Didn't go to the club this weekend. That's like a first. I didn't want to, but I never start off wanting to go. I will regret the lack of exercise. I worked yesterday. Went to Altus. It was a nice day. Didn't look professional at all. That was fine, I didn't want to see a soul.

Next post will be something Jerry has written. I have to get new lyrics up. I have to do a new intro. Those may have to wait. I have Christmas presents to wrap. Plus I feel awful. Woke up with a bladder infection. Hope the antibiotics kick in fast. I will be home Monday, Wed-Fri, so I should post more regularly.

Wednesday, December 17, 2003 7:34 PM CST

I told my Kiwanis club today. It was hard, but they needed to know. I made it without crying. I hate the idea that I might bring someone down, but they really do care about us. After I concluded the meeting, one of my fellow Kiwanians made an announcement. Anyone who wanted to pray for us, come to the back of the hall. There were probably 30 or so people in the back arm in arm, heads bent in prayer. It really was a beautiful sight. I couldnÂ’t join in, but I waited until they concluded. I didnÂ’t want to be accidentally hurt by mainstream prayer and beliefs. I knew I would hear the words GodÂ’s plan. I still get so angry over this. I just donÂ’t believe it. ItÂ’s a personal thing. God is good. He does not take the life of an innocent brilliant child. Such a waste of life. I picture him grieving with me. If he is truly grieving he cannot be killing my child. Got it yet? These words always come out when we mortals to not understand. Anyway, I was very touched. I am just explaining why I couldnÂ’t be with them. I am too fragile right now and donÂ’t want to break. Even a chip can turn me to sand, and what good would I be to my children then?

Yesterday was clinic (chemo) day except no more chemo of that kind. Daddy took her. I ran. I admit it. I couldnÂ’t cope. I could feel the itching build. I went to the field, one of our furthest offices. Of course, I was miserable. I do need to try to get as much fieldwork done as possible before I become house bound. But the truth remains, I ran. Jerry asked me last night if I was still running. I thought that odd. No, it was just ACH.

I am so afraid to bring someone down. It is why I have isolated so many. I have learned the best ones to talk to are those who understand. I hate to say this, but you have to have lived the nightmare to do this. But I hate for the nightmare to become reality again for them. God Bless you Loice. I hurt so much. I hurt so much for others. I can’t turn it off. I have been asked…why? WHY do you talk to the parents of cancer kids? You live their pain as well as your own. Why do you connect with those who have buried their children? It is so depressing. You have to know PMS (pre MRI syndrome). How the fear begins to build, even if all is well. For any day you may hear the words, ‘the cancer is back’ or ‘the tumor has progressed’. Until the day the journey ends, you will always analyze every move your child makes. Your stomach will be in your mouth when they say…I have a headache. Your heart will palpitate when your child says…I just don’t feel good. You will feel the adrenaline surge in your blood when your child falls down. It sucks. IT SUCKS. You are helpless.

So how can I live? If I can hold someone else, maybe fractionally I have somehow helpedÂ…made the day more tolerableÂ…eased a fearÂ…allowed them to discuss death without the fear of someone thinking they have given up. These kids belong to me somehow. I grieve and mourn every time I loose another. The parents I talk about like they live next door. They ARE my family. The same goes for the opposite. Every joy is brighter. Every accomplishment more fulfilling. I cannot explain the pride I feel when one of my kids starts school, drives for the first time, attends their first school dance, performs their first recital. SeriouslyÂ…I am the crazy lady jumping up and down clapping with tears running down my cheek.

Oh yeah, I just read the radiology report. IÂ’ll share in this privacy.
FINDINGS: Again noted is the large pontine glioma with extension into the medulla and to the cerebellar hemispheres up into the midbrain and into the thalamus bilaterally. Compared to the previous study from 09/15/03, the tumor mass is larger and the ventricles are also slightly larger, which may represent some mild hydrocephalus.

Well this is one big mother.

I picked up her chemo today. I can't do it tonight. I am absolutely terrified. But tomorrow they go with daddy until Monday. I can't leave it for him to do. It is my responsibility. I want to run. I want to hide. Please someone wake me up. I haven't had time to check on my other babies. I feel so guilty. Maybe Fri I can get my life in order. Anyone got a sledgehammer? As you can see I am also in the process of changing up the web site. I moved the most recent into the journal. The steroids make Savannah SO SO SO demanding and mean. Her belly is starting to protrude once more. I told Jerry she will change now. We will never have her again like she is today. Damn this sucks a big one.

Monday, December 15, 2003 5:44 PM CST

Thanks for all the prayers for us. Tomorrow we start temador. Daddy will take Savannah to Little Rock. I pray she tolerates this as well as the CPT-11. My honest opinion. The irenotecan did not work. Radiation lasts 6-9 months on average. Rads ended 12-19-02. After 10 months I began to see signs of progression. It became apparent to others at 11.5 months. There are so many children that radiation does not even slow down the growth. To balance this, there have to be those that go beyond 9 months. Yes, we were blessed. God granted us the high end.

We had a weekend of miracles. Lisa, Jennifer, Brooke, Sydney, and Abbie spent the night Friday. The girls had a blast destroying the house, fixing their hair, and putting on makeup. The mommies partook in a couple bottles of wine and girlie talk. Savannah freaked when Jerry left for Elaine's. Hence a quick call, and when the snow began to fall he headed home to his little angel.

The snow was great. The bigger girls played in it all morning. Savannah put her foot down and refused to go to Katie's birthday party. She said it was too cold to ride the white pony. She was so fatigued, her eyes drooped. I prayed the decadron would kick in better. She lounged all day. Jerry and I cleaned. Can't see what got done, but we were busy all day.

Couldn't sleep that night. He stayed awake with me and listened. I bled my soul to him...the divorce...my friends...how I was and who I became. At 2am I started to drink. I had to sleep. At 4:30 I finally crawled in bed with my little girls. Still felt wide awake but did sleep. Savannah woke me at 8:30. Breakfast in bed. I can't explain the love I felt for my daughter and my painter at that moment. Savannah insisted on feeding me. Jerry videotaped. I told Savannah I would remember that moment until the day I died.

Less then 4 hrs sleep, emotionally exhausted, physically exhausted, and taken care of by those who love me just as I am. You see, God still gives us miracles daily. Just open your eyes and recognize them. Through intense pain you really do find glory.

Cassie was painting an ornament at the table. Jerry was washing dishes. I just walked into the kitchen. I hear C say to J. Hey, I love you. Hey, I love you too baby. Like this happens on a daily basis. I couldn't move. I was stunned. I asked if he realized what just transired. Yes. Ha. See what I mean by opening your eyes. I got to see the very first time this happened. Thank you God. I am truly the happiest woman on earth. Alright, I am the saddest, too.

For those who know me, know that NO MAN will be involved with my children. NO MAN. PERIOD. I really would have been content not to be in a relationship until after the girls were grown. I chose not to date, in general for 1 1/2yrs after I was divorced. It was not in the childrens best interest. The rules were changed due to the beast. Savannah calls him daddy a lot. He has freaked over this until he saw her call her new step mom, mommy. (believe it or not, I have no problems with this at all...so I am weird because I am not a jealous person...bite me)

The girls went to Paulette's to decorate cookies in the afternoon. True angels. We took the opportunity to go to toys-r-us and circuit city. Picture this. An exbiker pushing a cart in a toy store running around getting the last item in stock. And he was loving it.

Savannah is here and says I need to spend time with her. So goodbye for now.

Here she is...christmas eve is coming, jingle...christmas eve is coming, jingle...i hope my mom had a great time and so did we.

Monday, December 15, 2003 5:39 PM CST

Savannah was diagnosed with inoperable brain stem glioma on 10/29/02 (the day our lives forever changed). This is the most dreaded of all pediatric cancers, for there is no cure. All treatment is considered palliative. She began radiation immediately, and was put on high doses of steroids. We seemed to be losing her during those first few weeks. Then the radiation began putting the beast to sleep. The steroids had now taken their toll on the tiny 40lb frame. She suffered from almost 3/4 of the listed dexamethasone side effects. That became mommy's new focus. Today she is steroid free except from what she gets with weekly chemo.

She is back to her old fiesty self...a little spitfire. Is the chemo working? Don't know. The radiation normally buys 6-9 months of time. We are at 11 months post radiation right now.

We have been given a wonderful gift. TIME. How is this a gift when you know the days are numbered? Because you know they are numbered, every one of them becomes special...time is no longer wasted. Learn to live the moment.

Monday, December 15, 2003 4:57 PM CST

HISTORY
October 18th 2002 is the day Savannah became symptomatic. Father Charlie drove the bus that afternoon. She had to go back and hug him. Her gait was unsteady. Her words slurred. She had been very tired the couple days prior. I took the girls to Carlyn’s for a haircut. Savannah was nodding off in the chair. We got home and she laid down. Christy, Randy, and Justin came over. Savannah was acting feverish without running a fever. She didn’t eat dinner. I was worried, but I didn’t have a clue of what worried actually was. How naive we are when our children are healthy. I thought she caught a bug.

Saturday morning her spirits were better, but her gait was way off. She has always been quite dramatic, and I assumed she was exaggerating. Her speech was better. She never fell. She ate well.

Sunday was the same as Saturday.

Monday I sent her to school. As she teeter totted out of the front door, I asked her if she forgot how to walk. She said, I guess I did mommy. The terror hit me the first time at that moment. I made an appointment with her pediatrician for that afternoon. I trust their dr more then any other I have ever encountered. She had a massive inner ear infection. She had not one symptom. Bizarre. But it could cause ataxia. This was the first time I ever heard this word. I was so relieved. She would get better. But she didn’t. She still fatigued easily and her schoolwork went in the toilet. She would stare into space. She had difficulty urinating. I didn’t even notice her fine motor skills were diminishing at an alarming rate. The monster was stretching inside the head of my beautiful 5 year old spitfire who wanted to beat up everyone who made fun of her big sister.

Daddy took the girls to Fall Fest. Savannah barely responded to Ms. Joan or Lisa when they saw her. Back to the dr. She still had her ear infection, but motor skills slipping severely. Acute cerebellar ataxia. Uncommon, but textbook. He asked about headaches and vomiting. No. He even talked with a neurologist at Children’s. They want to do an MRI just to rule out the bad stuff. She has no symptoms of a brain tumor…wham again…but let’s rule it out. I actually felt confident. Maternal instinct took a coffee break for the next 24 hours.

Children’s called in the am the next day, Tues October 29th. Pick her up at school, bring her in now, test is for noon. When I picked her up from her classroom, all the children stood up and hugged her on their own. I have never seen such loving actions. I will remember that til the day I die. At the hospital the nurses gave her some kind of suppository to knock her out for the brain scan. I went into the room with her and held her until she was out. Her eyes were open but she was not there. They strapped her in and her lifeless body went into the tube. I saw her death at that moment. Instinct kicked in. I ran. I am so sorry.

They called us in when she was done. She was on monitors…stable. She wouldn’t wake up. This stuff is only supposed to work for the duration of the MRI. And she still won’t wake up. 30 minutes. The nurses try without success to rouse her. 60 minutes. Nothing. Neurology needs to see you upstairs. We have to wake her up. 2 hours. Nothing. Go! I carried her lifeless 40 lb frame upstairs in high heels. This was serious. Don’t panic. It is selfish of me if I panic now. I will be no good to anyone. 3 hours. More nurses to wake her. One nurse opens Savannah’s eyes and shines a light. They do not react. THEY DO NOT REACT! Oh f^&the brainstem. This is an involuntary function. This is overseen by the most primal part of the brain, the stem. I took the cell phone and called mom. I need you down here now. I don’t know what is wrong, but it is bad. Very bad. 4 hours still no reponse.

The neurologist said…large lesion on her brainstem. What the hell was that? A big tear? The scan. A lemon size light bulb right between her ears. The stem is supposed to be the size of a pencil, right? We are admitting her. 4 1/2 hours she stirs and is gone again. The oncologist will see you. Oncologist? Cancer? A daze. You cannot think. You cannot feel. You cannot speak. Your body has gone in to shock.

Welcome to 3Gold. A place nobody should ever have to enter. A place that should not exist. Children should not get cancer. My child should not have cancer. I breastfeed that baby for over three years. She never had formula. I made her baby food. She seldom ate candy or junk food. She was never around second hand smoke. HOW? HOW? How did it happen? How did I fail? It was my to protect my babies and I failed in the worst possible way. She was going to die. And there wasn’t a damn thing I could do about it. 3Gold is a ward of angels. Because of what they do alone, they shall enter the gates of heaven before me.

2 months to 2 years. Radiation. Chemotherapy. No way of telling if treatment will work. Temporary. Love her. Make every day count. (these statements alone should piss a parent off, but I understood what this meant and was not offended) I RAN again. I left her in the hospital with Mark and ran. He was crying and couldn’t drive to Cassie or let my parents in. I couldn’t cry, so I RAN. I am so sorry baby. I was in shock.

The story had begun...

I have never written about the first days before. Maybe it is cleansing. Maybe it is acceptance. Maybe it is depression. Maybe it is just time.

One yr is over. Savannah is in the 50hat make it past one year. Thank you God. I told you to take her immediately if she couldn’t have quality life. You have blessed me. If you take her tomorrow my sorrow will be indescribable, but I will be happy that you graced us with quality time.

I watched her fall asleep last night. A sleeping Angel. Porcelain skin. So peaceful, full of comfort and love. I don’t want her to go.

Wednesday, December 10, 2003 1:39 PM CST

The tumor has advanced into the cerebellum. It appears as if she is breaking through the chemo. Or has it ever really worked? This explains the ataxia and the difficulty with her handwriting.

The next step is to begin a new chemo protocol next week. The dr's choice as well as my own. temedor. At least I can administer this to her at home. I so wanted to be wrong.

She would just not wake up after the sedation. And 4 hours after receiving sedation she was unable to walk unaided. The memories from 10-29-02 flooded back. This time I did not attempt to wake her. I just let her sleep. Jerry came after work to the hospital to see his little girl. What a blessing he is. We had horrible traffic and heavy rains coming home, so Cassie stayed with daddy last night.

Savannah is back on dexamethasone. 4mg/day. I hate this, but her doc said we will try to wean her shortly, if we can. He will look in to alternative steroids. Yeah! Maybe he finally gets it.

I am putting the word out...no phone calls to the house while the children are present. No phone calls at work. I am so tired of busibodies. I don't want to go through what I went through last year. Maybe I have become cynical. People call. Tell me they are praying for me and expect me to tell them the details. Like it is their business. Then they are soooooo compassionate they ask how Savannah is doing, in her presence, like she can't hear or doesn't know what is going on. The statement, we are praying for you does NOT entitle anyone to our private lives.

I will post and update here. You have all been invited.

To Lisa and Jennifer...do you and your girls have plans Fri night? Please call with that answer. We have to go to Morrilton for girl scouts.

Savannah is so much better today. Her normal self. But she did need to recover from yesterday. If the chemo does not work we have a couple weeks of normalcy left. Shit, I really hate this. I seem quite normal. Just sorting crap out in my head. What do you want, Savannah? I will give that baby anything. Last night she asked for Jerry to lay down and cuddle with her on the sofa and watch Lady and the Tramp. It was a beautiful sight. The tiny girl craddling his head in her arms. Her little frame nestled up. The christmas tree lights on. It was so peaceful. I don't know which one of us three we happier.

Sunday, December 7, 2003 1:38 PM CST

What a busy week!

Cassie had to get a couple cavities filled on Tues. The dentist ended up having to drill deep deep and put a cap on. I have NEVER seen her in so much pain. The dentist said she can't feel anything she is just scared. Well, so freak'n sorry...but...I know true pain and she was in agony. I put her on codine and kept her home. The by the end of the week she has the flu. Savannah and I got our flu shots. Savannah does have a mild cold though. Poor babys. Needless to say I have been mothering when I am not at work. And I have been trying to make up as much of my time as possible.

Now that I can't access the site from my office, updates and reponses have even been more slim. My support group email have been bulked and sent to the house. I have to go through hundreds. I can't neglect them. I need them to survive. One of my coping mechanisms. I have even got a couple off line because I have been unusually quiet and MRI time approaches.

I will respond right here to a couple things.
Mary...the bt scale is something I made up. I initially figured a 1-10 scale for a normal kid. My bt scale came in at a 2. Then it was broken to a 1-10. I'd have to move the bt scale to a 7 in normal kid range right now. But she is slightly symptomatic.
Paula...I feel I could have written all the lyrics on Fallen, except one line. It is my artist of choice for my pain. I listen to one of the songs and relate it from Savannah's perspective, my perspective, the loss of my best friend. I now listen to it from your perspective, Pam's perspective, and Karen's. You can tell the inner Lisa by the music I listen to at the moment. One yr ago it was angry. The angrier and more vile, the better. Eminem kept my sanity. I could not take my anger OUT on anyone or thing because that is wrong, but you still have to experience it and not cover it up in drugs. And talking about it pissed me off more. To get out of a funk, I listen to dance music. I play dress up and go dancing. I get my exercise and escape on the dance floor. Still prefer the Dead for road trips.
Tami...I think of you and Celeste daily. I talk about you like you live next door. We share the same pain, fear, frustration, love, and devotion. You are never far from me. You see the world through the same eyes. You reach out because you are scared shitless and are so very helpless. We will always be the same. And we will be there for eachother.
Yvonne...you have become a great teacher. A teacher of faith, knowledge, and love. I am so honored to have you in my life. It is because of the death of your beautiful daughter. You make it on day at a time. I believe, you cannot get over this and you cannot move on after an illness like this. But we can still live. We will have a full life with a big hole. I will be able to continue because of the parents like you. Never allow anyone to forget Leilani for she is with us always.
Susan...I know you can donate grey hair...LOL. I have been very worried about you and Jake. I will check your site when I am done here. Haven't heard a word about the MRI. I get consumed with it at work when I can't access the internet.
Paulette...$10. The tooth fairy was quite generous and even let Cassie keep the tooth. Cool. It's funny...I always wanted Cassie to become a dentist. Don't know why, just did. Well, she informed me NO WAY. She HATES dentists. So much for that dream. Thank you so very much for all your posts.
To eveyone that posts...Thank you Thank you Thank you. I could not have the bizarre normalcy I have with out you.

I was very busy with Kiwanis the end of last week as I will be this week, too. Oh, last Tues night Jerry and I worked the Santa hot line. It was wonderful. He was freaked out at first but did it for me anyway. Well, he found it quite fulfilling. Yeah, you take your date to give magic to children. I guess I just make a pretty sad date. One night a week for us to actually talk and I put him on the phone ALL evening with little kids.

MRI is Tues. I thought I was handling it well until I realized I couldn't sleep and could not stop the nightmares. Those who live this know PMS (pre MRI syndrome). We want to know but we DON'T want to know. We have to know but it KILLS us. If it is good, that's a relief. If it is bad, well our baby is going to die. Every quarter we wait and the fear mounts. She told me she got dizzy and her head hurt for no reason one day last week. AAAAGGGGGHHHHH!!!!!!! But the eye dialation is normal. Yeah, I had angry music this last week and pain music, too.

Daddy got married yesterday. The girls went along. They have been wanting this for a while so I am cool with it. I hope the girls are having fun. I am busy and need to check my groups.

Monday, December 1, 2003 6:33 PM CST

It’s been a while. But I left this part of the bt world for the holiday. The girls went to IL with daddy. I remained at home to work, clean, rake, shop, and cook. Well, not much got done. I was a stressed out wreck, but I was distracted by a wonderful knight who took me to another place this weekend.

Thur we had Thanksgiving with Audrey and Kevin. I had never spent this holiday with anyone other than family. Their doors were opened to all their friends. It was great. And I was so touched. What I saw was what Thanksgiving was truly about. Include All your loved ones. Reach out and be thankful for what we have and share. Fri we went out for breakfast. While waiting for a table I began getting jumpy. Road trip calling. I missed my babies so much. Too far away. Decided the nightlife of Memphis called. I was pampered, indulged, swept away, allowed freedoms, and went to a different world. All I can say is, “Oh my God”. I can elaborate no further. I can equate that with being kidnapped for a day at the spa.

Returned home feeling refreshed. Still visited the daily dark place and shed tears, but this is normal. Went to the club Sat night to dance. Dance we did. Must admit I got a little wild, but I needed to swing my head. Still always need an escape. I danced for Jarod. Didn’t cry this time. Just immensely sad. I hope his momma is okay. I thought of Pam. You know, everytime I look at the moulding of mine and Savannah's hand I tell her thank you.

Sunday, decorated for Christmas. Wanted to get it done prior to the girls coming home. I have tons of stuff to put out. Had to wait on the ornaments though. Tree decorating is a family event and will be done right after this post. I have time to do it right this year. Last yr was daily radiation. Long evenings at the office to get my 40 hours in.

My girls came home one day early to me. I was so very happy. The girls beamed and bounced off the walls. Jerry confessed to me all he wanted to do is hug the girls as they walked through the door but held back because he did not want to make daddy uncomfortable. Immediately it was Jerry this…Jerry that. Can we have tickle time? Will you play a game with us? Please tuck us in. Savannah even wanted to be around Shady. They wanted her to spend the night. They each kept coming up to me and just saying…I love you mommy. God, I am so blessed.

MRI time approaches. A week from tomorrow. The jitters will begin. You want to know, but you are terrified to know. You want an explanation for the changes, but you want to hide. I feel calm, but I know I am not. I could not sleep last night. Everything was in its place, so I should have been at peace.

All in all. I had an incredible weekend and I have my babies back. A family once more.

Oh, Savannah seems fine. Fatigued but fine. Thank you for more time.

Tuesday, November 25, 2003 7:26 PM CST

Please don't panic...or Maybe.

They have shut us down at work for internet and email use. I can't complain. They give me a paycheck and I owe them for that. So updates maybe less frequent because I will have to do them from home and I have my children around me constantly. Jerry and the girls are having tickle time right now so I have this time to escape for a moment for me coping.

An angel sent to me. So humble. Nothing but himself and love for my children and myself. Do I foresake everything I grew up with for this? Does it really exist?

Savannah threw up Monday on the way to school. We bt parents are a weird bunch. We pray that our kids get bugs. Funny huh? Except I could really get scared here. She fell twice tonight and Jerry even said she was having a hard time tonight. She brought home a paper with a -3 on it today. I am not trying to boast at all here. It's just she doesn't get these. PERIOD. except the two weeks prior to dx.

THANK GOD mark and vickie moved up the wedding. THANK GOD. to hell with everybody else. to hell with them all. this is not real life. THIS IS NOT REAL LIFE. your children are not DYING do you understand??????they are not DYING and you don't have to watch them. To hell with you all. we have to live our lives very differently for our children and for our sanity. The rules changed. they changed the moment the dr said massive lesion on the brain stem. now we survive. do you know what it means to get through each day scaping by on your teeth?

We somehow make it through. we somehow make it alive...through every day. do NOT pass judgment.

I am the mother of a dying 6 year old. I can not change this. I am the mother of an eight year old daughter who will become an only child. I AM NOT A CHILD! I live for my children. And I have to cope. I think I have a clue of serious medical conditions. Let me cope. Let me live. Let me allow my children happiness.

I have moved Savannah back to the BT scale from the normal scale. I hate to do this. It hurts bad. If you remember it begins at a 2 on a 1 to 10 normal kid range. She enters with a 9.8.

Friday, November 21, 2003 9:10 AM CST

I was going to write some sort of profound entry yesterday but never got around to it. Today I really can’t think of anything.

Cassie received $10 from the tooth fairy. And…check this out…because she had to endure the trauma…she left her the tooth to show off. Cool. I mentioned before their daddy has some good points. This is one of them.

The girls had their hair trimmed on Wed. Savannah had been fighting me on this. Her hair has been growing in around her ears and neck. This was what she had lost from the brain stem radiation. The rest thinned due to the chemo. It got scraggly, but she wanted to keep her long hair. Oh, mine is growing out, too. I figure in two years I’ll have another 14” to donate. I may continue to do this until I become entirely gray. Lost track…the girls got off the bus and Savannah yells…yeah!!! We are going to Carlyn’s to get our haircut. She looked through all the magazines for a perfect style. Anyway the cut was done to make her hair look fuller. Nobody can tell that she is a chemo patient.

We went out to eat with Ricky and Carlyn and Wendy last night. Savannah wanted a table for two…just her and Carlyn. It was cute. Jerry joined us, so he got to meet some of my older dearer friends. They are those type that you don’t have to talk to for 6 months but love you with an incredible intensity. And when you get together no time was lost.

Savannah has seemed extremely tired the last couple weeks. Hopefully, she is lacking sleep, but I just remember. I remember. I remember prior to dx. She almost fell asleep at CiCi’s Pizza, she could barely finish her homework at nights, and she kept drifting off while getting her haircut. It is probably a good think that their daddy has moved up his wedding. I pray she just needs sleep.

When I picked up the girls from cheerleading yesterday, the principal stopped me. He informed me that Savannah hasn’t been eating any lunch for the last week and ½. He got her some ice cream to eat. This may be why she has continued to loose weight. She is right were she needs to be, 43lbs. At least I can say she can eat an enormous amount of food for such a petite frame, which she did at dinner. This is good.

How does a parent live everyday wondering if the cancer in their child will return? Mine is different. Hers has never left. But how do they function. They must watch too. Always looking for the presenting symptoms. I bet if there is any change regardless of time of remission, the terror returns in torrent. Then the guilt must hit in a gale storm. Because they slacked off…lived normal for a while…took for granted something…should have done this…should have done that. What a horrible existence. Yet they have no choice but to go on because they must continue to watch until it either does return of God calls them home. I have a numbness today. Shed a quiet tear for those parents. I know the fear. I know the eggshells. Maybe I am so used to hurting. Savannah is okay, so I have to hurt for someone else. I wish I could somehow ease the pain. I want it to just go away.

You know, no matter how much you let someone in…when it comes down to it…you are always alone. You can truly trust no one, for they will turn their back on you. This is evil. The coldness of evil.

Wednesday, November 19, 2003 3:32 PM CST

Cassie was a brave little girl yesterday. The dentist surprised me by not letting me go back with her. I don’t like that. Cassie said he said not nice things to her, and this was the dentist I thought she would do better with. I don’t think it is because I am an overprotective mom. I have just learned you can be creative or a b*&^I do attempt the first.

God put puzzle pieces in place last night. The girls were gone. I had solace. This just doesn’t happen much. Within 10 minutes I received a call from another bt mom. We spoke of out childrens upcoming death. We spoke facts, not crowding dialogue with comforting God stuff (this is what I get a lot). We hurt so badly but needed clarity in our situation. It was a wonderful (if this is possible) conversation. But afterwards I went into a blur. Too too many things flying through my head. I felt it surging through my blood. Three drinks later I could actually think clear. Many have asked my why I allow this if it brings me down. I think they are crazy. I will do it in a heartbeat because I want to, I have to. I owe it to ALL the children out there who have been handed death sentences. I guess I have never taken the easy road, but did Christ? I want these calls to continue. The lyrics to the above song kept ringing in my ear. The lyrics have always meant something else to me, but it changed last night.

Jerry started his new job yesterday. All went well. I am so proud of him in so many ways. I need to find just one person to allow into me, into my soul, my head, my blood. So far so good. But I have also learned to live day by day and I think this frustrates him. Future what future? What will I become once this journey is over? That is certainly not fair. Is what I am today what I was a year ago? No way! Is this being just temporary?

He came over to tell me all about the new job, and I was in the bt world. He encouraged this and agreed with me. Do you see that this is not about us? I couldn’t cry last night. Mind whirling. Never one to snuggle much, but I allowed myself the strength of a man’s arms around me. It was comforting.

Went to the dentist this morning. Suspected abscessed tooth. My face hurts bad. I go for an eval and possible root canal on Monday. Dang! Cassie on one day, me the next.

Looked in the mirror this morning. I looked OLD. I’m sure stress, lack of sleep, and pain has something to do with this but I still wanted to through a brick at the mirror. Then I got on a fat kick. You know how us women can be. Then my hair isn’t growing fast enough. So I’m down on myself today. Then I’m told I look good today by a couple people and even get quite a proposal. Don’t know what the heck they were looking at. They need to clean their contacts. I just think it is funny. To all those worried about the above song. I am okay. My face just hurts. I keep popping motrin. For those who know me well…I hate swallowing pills…and flip out over taking drugs, even vitamins.

But on a good note, I get my two lover girls back tonight. I can’t wait to embrace and kiss them. I can’t wait for Savannah to stroke my face and for Cassie to smooth my hair. I wonder how much the tooth fairy left Cassie last night. It better be a lot for the ordeal she went through or Savannah will beat her up!

Monday, November 17, 2003 9:30 AM CST

An incredible weekend…Donna, Debbie, and little Corey came to visit. Corey was just so smiley and sweet. I had a wonderful surprise, too. For three years when I go to St Louis, us girls try to go out for an ALL GIRLS night. Well, due to children and just life, it has never happened. Elaine volunteers to baby sit all three children to allow us ladies to go out. So off we went. Audrey and Laura even came. We had a real good time. I wore tennis shoes, so I absolutely could not dance. I need a heel. Anyway…I had one of the most incredible feelings on the way home. I sat between my girls. I had two of my oldest friends, two of my newest friends, all the children, Elaine had watched them, and Jerry drove. It was peace or warmth or love. I can’t really describe it. It was just so awesome. It was also funny; us mommies with babies were sober, the rest were lit.

Saturday we all hung out, Debbie and I raked until dark. After the kids went to bed we switched from beer to wine. Three bottles later we were buffing the kitchen floor doing the worm. I videotaped all our antics; it was funny (yeah, we watched it on Sun). Don’t know how none of us were hung over. That probably had to do with time, the cheezits and fritos, and lots of water, too. I actually forgot. That doesn’t happen very often at all. It was nice to leave the brain tumor world for a while.

Jerry came over Sunday. He started a bonfire and just raked all day. All the rest of us were busy inside. When they left Savannah cried. Begged them not to leave. She is so attached to her ‘Aunt Donna’. Cassie asked her one time why she called her that. Savannah said…Donna is mommy’s best friend…so they are like sisters…so that makes her my aunt…got it? I then told Cassie it is an honorary title she gave her. Well, by the end of the weekend Cassie was also calling her Aunt Donna and also Aunt Debbie.

Then Cassie comes down with a bladder infection. But I had just put her on amox. for the upcoming extraction. Poor baby. I know how miserable that is. She seems better today. Maybe this antibiotic will work for that, too.

Friday, November 14, 2003 9:34 AM CST

What a day!

Yesterday was dentist day for the girls. Savannah gets off the bus eating a large red sucker. Aggghhh, we’re going to the dentist now. So mommy, I brushed my teeth this morning. She is still eating on it when she goes back to have her x-rays done. Hold this mommy. This is so sad. Cassie has an abscessed tooth, which needs to be pulled. Another tooth whose cavity is so large, they will have to try to save the tooth. A total of six cavities. In just six months!!! Now Cassie brushes twice a day with toothpaste. Little Savannah hates brushing her teeth. And God forbid, there be paste on her brush. Is there even any sign of decay? Nope! Cassie just kept saying, it isn’t fair, it isn’t fair. My poor baby. Oh, as we were walking out, the sucker went right back into Savannah’s mouth.

Last night we bid our painter’s family goodbye. They are moving to OK. Meet the rest of the brood. There was a balloon there. Savannah starts saying her birthday is on chemo day. She takes chemo because she has brain cancer. It comes out so matter a fact. Well, let’s shut everyone else up. My spitfire who was doing the limbo under the phone cord should not speak like this. It is so wrong. This whole thing is wrong. We had to leave pretty early, school day.

Today Donna and Debbie come down for the weekend. The girls are ecstatic. Savannah is making enchiladas for dinner on Saturday. Hopefully, I can get some yard work done. These are the friends to have. Ones who drive 7 hours to help you. You see the rays of light!!!

Oh, remember the not having someone to pick up Cassie ordeal. Well, as always, it was turned around to be partially my fault. He dropped the ball by forgetting to call and I dropped the ball by not calling to check if he looked or not. Now…for a year I have been calling him to remind him of stuff…and it is always…of course, I know, I wouldn’t forget, I’m leaving now. So the last couple months, I’ve backed off. And guess what, he was picking up the kids when he was supposed to. I was actually kind of proud of him. Then wham, he forgot and I didn’t remind and I am to blame. I almost bought his whole blaming thing except, the first thing he said when I asked him what was going on was...I couldn't think of anyone. Alright, this means he never gave it anymore thought. Which means he dropped the ball, not me. No it doesn't hold water. He figured something out and I went with it. But my post did get me two calls saying they would get Cassie and not to worry. More rays of light? Yeah, I can see, how about you? But he was working on a solution, so I let him. I was concentrating on Savannah.

And one more thing, I woke this morning to the sound of two little girls screaming in my ear. I received an alarm clock that is voice recorded. The girls can’t leave it alone. It has had at least 50 recordings on it and I hadn’t used it yet. I jumped when it went off. As soon as my heart went back in my chest, it was the most comforting soothing sound, my giggly girls. What a wonderful gift. Thank you Yvonne for filling my heart with total fear and love at 5am this morning.

Thursday, November 13, 2003 7:38 AM CST

Gossip

What is gossip?

Gossip is digging for information that is none of your concern. Instead of asking directly, it is done by going behind your back. Going to places you were not invited to. If you are invited, that is one thing. To share with others not invited is another. They think they have a right. A right! A right? I guarantee it is done to hurt. They will never in a million years see this, those miniscule shallow minds. But I have lived many times and with that gained a wisdom. Yeah, this don’t jive with Catholicism, but some things you just know. It is shared then with others who were not invited. It is an invasion of myself, you, or whoever might be the victim. They won’t stop either. The selfishness floors me. Do these people realize they rape our minds because of pure nosiness? Do you know how it feels to have your home broken into, your body abused, your mind shattered? They gain some kind of sick entertainment from this. Then let’s share. Share with others who did not have access?

Why? Because they know it is wrong. It is a sin, but if they can get a following it minimizes the sin they commit. Oh, then let them pray for me. Shit! Pray pray pray. But let me tell you what I pray for, other than the obvious. For them, for their evilness…that they might see the light of God. And forgive, that will only happen when they ask forgiveness from me for their crimes. I am so very tired of people just asking Christ and then it is all done. Sorry! Requires more. You must ask forgiveness from the person who you have sinned against. I am so tired of us Christians taking the easy road out. Where in the bible does it say Jesus took the easy road? Huh? Then we try to walk the same path. Yeah right. In the vast majority I just don’t see it. But occasionally I do run across those who the light shines through. It is a beautiful sight, beautiful sound, and you can feel it in their writing. They don’t even have to be Christians!!! But as I see it…find the path to your maker. My fresh air in the corrupt world that surrounds us.

The world has become so selfish. It is what we want. What happened to our children? What happened to the rest of society? Where is the reaching out, the compassion for fellow man? I wish they would stop. I know they won’t, so I go on. I have been told by my ex that I am vindictive. Maybe, what I do is nothing. Sit back and watch. It comes back around. I don’t enjoy this but I recognize it for what it is. It makes me sad. It is Karma.

I have hardships. Everybody in the caringbridge family has hardships. But I also am filled with love for others that I never knew could exist. I love many people in many ways. I do not overuse the word. I love my friends, male and female. They become a part of me. Please, this is not sex. Now what I have is cyber friends that I also have learned to love. It was so easy. Maybe because we are the same now, an elite group who were hand chosen by our maker to parent a terminally ill child. These parents, even through heartache, are blessed people. I can see that, can you?

Wednesday, November 12, 2003 6:38 AM CST

Off to chemo.

Daddy was supposed to take Savannah this week, but because the day was changed I have to. He is going out of town. But guess what he left me with??? No one to pick up my other daughter. Yeah! He said he would look into finding someone. He has the girls last night while I worked late, desperately trying to make up some time for today to cover his ass. And as of 6:15am, he told me, I couldn't think of anyone. Shit!!! I will be in Little Rock and Cassie will be in the church parking lot in Russellville. You have to let the school know in advance who is picking up your child. He has left me to handle this while I am in the hospital doing the chemo thing. One phone call last night and I could have tried to track somebody down, anybody down. Oh, by the way, because of this mess, I have to take 4 hrs sick time/vacation time for chemo today, too. I bet ya he doesn't even have the emla cream on her.

I try to bend over backwards for his schedule. Maybe I need to stop. I know all daddies are not like this. Of course, maybe this is a contributing factor why he is an ex. No that was caused by an attack. Oh yeah. I forgot. I took the girls for him over the weekend. Hunting season. He is actually afraid Savannah may be slipping, but God forbid he miss hunting season. Let's put it in perspective here. And no, he did not hunt regularly when we dated.

I guess I will find out at 7:05am, if I have to take over. It will somehow work out. God will see to that, but in the mean time, I am having an iron skillet moment.

Monday, November 10, 2003 3:27 PM CST

Savannah and I casted our hands together on Friday night. Thank you so much Karen. Thank you Pam. And Pam, if you could look down from above and see how beautiful it turned out, your smile would reach from ear to ear. Actually, the detail is so precise; you can see every vein and scar on my hand. It is absolutely beautiful. I will get one for Cassie and Savannah to do together.

The girls spent the night Saturday at their friend’s house. I always try to have the sleepovers at my house (protective bt mom here). But they want to spread their little wings. I called before I picked them up on Sunday afternoon. The mother told me Savannah just out of the blue started acting weird…stumbling around…bouncing from wall to wall down the hallway. At first she thought Savannah was acting, but she said she was dizzy. This didn’t come from me…always looking for something…trying to figure out if there is a difference or not. I don’t think she knew this was the first real discernable bt symptom. I felt no terror. I did not cry. I did not scream. I went into shock. I went on autopilot. I was numb. This is the part that I couldn’t believe that I did. I actually looked how many mg of dex I had left. ME, I hate the stuff, and I am dropping pill bottles looking for it.

When I got there she was a bit better. Savannah said she was dizzy from swinging a fish (stuffed, I hope) around in her mouth. Well, try to get her to stand still several hours later. She can’t do it. But remember she is a bit better. I keep focusing on this.

The dex caused such severe kidney stones in such a short amount of time that I don’t want to go there again. I am somehow going to have to convince the dr to use a different steroid that might not have that side effect on her. I guess there is no time like the present to bring it up. Hopefully her dr will be there on Wed (they are closed tomorrow for the holiday).

To all, I am okay. We take it as it comes. Tonight is PT and OT. I will let them tell me if they see a change, not prompt them by telling them what happened yesterday.

Thursday, November 6, 2003 9:40 AM CST

Sorry about the delay.

Sunday I couldn’t post my fears. Wasn’t ready. Wait and see. Saturday night, Savannah had some slight symptoms return. Left eye droopy, can't stand still (ataxic), eyes misdilating, thick tongue. She had no reason for this. I hoped Sunday would be better. It was, just a bit. Monday about the same. BUT in the afternoon she threw up at school. Can we spell T E R R O R ? Classic brain tumor symptom. Now Savannah never vomits, her whole life we couldn’t remember her vomiting. Hoped it was a bug. Weird, huh. You hope and pray your child has a stomach virus. Well it wasn’t a bug. I will just have to wait and watch. I HATE this. But I also don’t want to hear the words, recurrence. (remember there is NO remission with a pontine glioma) I did post on my support groups. Oh, the love and support they showed me!!! Loice checked on me at home. I just don’t know where she finds the time to take care of Tori, her father, and all of us. She is one of my role models. And when I feel I can’t do it, I remember her, and pull out more strength.

Tuesday was chemo. Savannah asked Jerry to come with us because he has not been released back to work. Chemo BEAT us to exhaustion. We didn’t have to see the dr but everything took forever. They only gave her a 1 hr flush instead of a 2 hr flush. Sorry but this freaked me out. We have been doing the chemo thing since Jan. They wouldn’t even end the flush 15minutes early to beat rush hour traffic in the past and now let’s cut an hr. Yeah, my red flags were waving. Kelley assured me this was fine because she had no vomiting or diarrhea. Well she never has, so what gives? Who knows? But I am leery. We miss Charlotte desperately. Everyone is very caring, but Charlotte always went the extra mile for Savannah and we grieve. We got out of there at 4:15pm and drove home. While under her post hydration I showed Jerry her eyes. Left pupil big and the right much smaller. I have noticed this a lot during chemo. That tells me the chemo is attacking, causing swelling. It reminds me even when she is good and idiots tell me maybe the tumor is dead; that they are just idiots and the tumor lays in waiting.

We got home completely brain dead (aggghhhh – the sayings we use). The girls went with daddy. And I went home and vented fear, frustration, and anger. I fell sound asleep at 9:30pm. Yesterday I did field work, ALL day. I was toast once more last night. Savannah was fatigued and had a difficult time doing her class work from the day before. We will have to do the other half tonight.

But on a good note, she was talking about wanting to be Kim Possible when she gets to be a teenager. Last year at this time she was saying this was to be her last Christmas. What a nightmare this last year has been. Will someone please wake me up?

It is mourning season for me. One year. The loss is emense and intense. Not an hour goes by when I don't think of it. Will the pain and loss ever lessen? 'Bid my blood to run, before I come undone'.

Sunday, November 2, 2003 4:37 PM CST

All Souls Day

I am giving everyone a catachism class here.

What a wonderful weekend. Hayley and the girls had a terrific time. She was amazed with our family's 'private artist', teeheehee, as am I. She kept going upstairs to watch him paint. He finished Savannah's horse, so she will take it to show and tell on Friday. Yes, he is right here watching me type and enjoying himself immensely.

It was a normal household today. Do you know what that means? Those who have been there know. It is weird. I actually found myself a bit envious of normalcy. But I realized I would miss out. But I am still envious, I can't help it. I am just plain jealous. It may be a sin, but I don't care. I want the pain for all the parents to GO away. I want them to wake up. Savannah was a bit symptomatic Saturday night. It is hard to pretend you are imagining it and it is hard to ignore it. Sunday she was a bit better.

Savannah is here on my lap. She wants to say that she has been in her panties all day long playing. We watched Cats and danced. She painted pictures. And I will turn the keyboard over to the princess...cat I abcdefghijklmnopqrstuvwxyz lisa see...

okay, check out wendy's post on the guestbook. That is what we are all about. The grief, the anguish, the fear, the questions. It was beautiful and touched my heart. She is loved...by those who have never met her. The same goes with me. And once more I shall say this, if I were to leave this world tomorrow, I will die knowing I have been loved. Loved by more people then I could ever imagine. I will leave knowing I touched the lives of many people and actually MEANT something. My existance was important. That is how I will end the cycle. To Wendy, you are loved, your anguish shared, hands reach out and embrace you when you don't even know. When you backslide into your grief, many hands (unseen) are there to help you back out. I talk about your children as if I knew them (and in some strange way, I do, as all my other children out there). I live grief. I live anguish. I live heartache and pain. We can continue our existance here on earth as long as we know that we chosen are not alone. This is how I live through the day, every day.

Please pray for Ronan's family. He earned his wings on Friday. I HATE brain tumors!

To Wendy, Riannon, Yvonne, Jan, Dave, Christy, Claire, Bill, Jim, Glenn, Jenny, etc. etc. etc. may you find a comforting peace.

Saturday, November 1, 2003 11:38 AM CST

All Saints Day

We honor the saints today, for all you non Catholics out there.

I made it throught the night. I did not break down the way I wanted. On my way home I stopped by the bus stop to see the girls. Held back the tears, then let them loose driving home.

I spent trick or treating time driving to the liquor store. When you live in a dry county, this is a long drive. I was planning an escape last night. I was ready to get sh*&^faced. Alas, it never happened. I just talked monotone. Laura drug my out to the club.

Dance...dance...dance...like no one is looking...how I release...arms swinging in every direction. My hair was in a bandana so I missed it swinging in my face...weird feeling. Drop to the floor...up...down...up. A workout I got. Could have gone on...I needed to hurt because I was hurting. The DJ played our songs back to back...good boy. It made my night. We weren't there too long. Kevin and Audrey surprised us out there. They are so protective over me. They came to check on me, 30 miles, to make sure I was alright. What incredible friends I have.

Slept well. And in to work. I will have my babies shortly. I missed them so much. I still need my breakdown, but it is temporarily postponed.

Little Hayley is spending the night tonight. When I told Savannah she screamed and said 'your the best'...Cassie yelled ' I love you, mom'. Oh, what incredible kids I have. We will make cookies tonight, watch 'Barbie as Swan Lake', and sleep in the little pup tent inside. It will be fun even for me. Maybe I can talk Jerry into coming over for a while and paint. I bet Hayley will get a kick out of that.

What's up with the weather? It was 82 at 10pm last night. I thought I was going to roast in my castle dress. One week ago they said 30 degrees. Oh well, Arkansas weather.

Thanks for checking on me. I am okay, out of the dark place for a while. The skies are clear, the breeze tickles my skin, the sunlight warms my skin, my house is clean, and I will have life...little girls...filling my home. Can life be better than this?

Friday, October 31, 2003 9:09 AM CST

Happy Halloween!

One of my favorite holidays. Harvest time.

I supposed it is appropriate that the darkness has captured me. The anger is ferocious this morning. I want to spit venom. The darkness wraps his cloak around me as I withdraw into myself. My mind is sharp right now. One thing about anger that is good. Clears the mind of other emotions.

I was fine this morning until the ex calls about the steroids Cassie was put on for her asthma/bronchitis. How many pills this morning? What??? Follow the directions, dufas. Alas, I was in the shower when the call came. I called immediately back. Cassie answered. Daddy was in the shower. Anyway, long story short. He didn't give her the two pills before bedtime. I am not a violent person, but at that moment it was all I could to keep from throwing my cell phone across the room. I was looking for something to kick. Could he not call last night? I was at home visiting with friends.

Steroids, you can’t mess with this shit. It is so necessary…but does ANYBODY know how dangerous this drug is. I am probably overreacting but I fought to bring Savannah back from the deadness of steroids. Improper dosing and weaning can KILL. I am fighting for the time I have with my 6 yr old and he f&*^% up with my 8 yr old. And to talk to him it is no big deal. Oh, what a piece of work.

The dosing schedule was left at school. And daddy blames Cassie. Why didn’t you get it back? I am so tired of him blaming a 6 yr old and an 8 yr old for his incompetence. If the schedule wasn’t there, why didn’t he call me? Mom says I am way too hard on men. I don’t think so. I should not have to live in fear of the girls being with their daddy. If it wasn’t for his violent streak, I would not be in this situation. Yes, I harbor a lot of anger still. My life mate was stolen; my comfort was stolen, the family torn apart because he chose…he CHOSE. Now we are here. And I have to fear because he is too lazy to be a father. And then blames the children for not taking responsibility. I will give him some credit but not today. I have to flow with anger right now. See it through, so I can crawl out on the other side.

I am on overload. My blood boils as the pen speaks. The tears are close. I need to hide. I yearn for the dark cloak, block out the world leaving only me, where I don’t have to worry about anybody else, where I can find the comfort of withdrawing into myself, and let my body metamorphosis as it was designed to do.

Thursday, October 30, 2003 12:58 AM CST

October 29th has come and has gone. I was given another miracle that I would like to share. I was dreading the date. I dread every day that passes, but this is Savannah’s anniversary date. It means one year is up. I was feeling so many emotions I though I was going to erupt. I was so overjoyed my princess is still with me. I am so scared because the clock ticks. I am happy she is deficit free. I am in anguish over the other children taken by this monster. I am so pissed that we have do be here fighting this battle.

The miracle…Cassie had been sick, asthma and bronchitis. Savannah had chemo on Tues. The girls had so much schoolwork to do we were on overload. In an instant I would start to think…then…mommy blah blah blah regarding homework. Proofread, check math, read book, be read to, sight words…on and on and on and on all evening until bedtime. I had to go on automatic pilot. I think all mommies know what I am saying. We went to bed exhausted and I never had time to really rejoice or go to the dark place. We did pray before we went to bed and give thanks. I slept in the middle and held both my babies close. Both of my babies. It should always be both of my babies.

Karen sent me a molding kit for Savannah’s and my hands. This was for Pam and Casey. They never had a chance to use it. I want to do this over the weekend. I have to wait for Jerry to get healthy enough to hold a video camera. I may even get a kit for the girls to do together.

Mark is taking the girls Friday night. I have had them on all these other dates. I do not think I could handle trick or treating this year. I need a breakdown. I am so tired. I need to cry. I need to cry bad.

Please everyone pray. A prayer of thanks. The future scares the crap out of me and I don’t want it to come. I want to stop right here. I am holding on tight.

Sunday, October 26, 2003 1:06 AM CST

Jared has transitioned. I just knew earlier in the day. I couldn't bare to check his site. I am so sorry.

Please go see this beautiful child, mother, and family. www.caringbridge.org/ca/jaydog.

The peace is pure. I don't know why I can't seem to stop the tears. It is not sobbing. It is actually kind of happy in a morbid way. I am numb with sorrow. Can anyone understand that? I can't. Before I checked the site I was bawling. I remembered something. When Savannah was diagnosis...I will tell later. Can't do it now. This is for Jared.

Please link to Ashley's site. Crap crap crap. This weekend has been hard. Lots of tears and utter exhaustion.

Friday, October 24, 2003 9:25 AM CDT

The girls have been great. I have been great. BUT...

I need comfort prayers sent to another family.

www.caringbridge.org/ca/jaydog

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Everyone have a wonderful weekend. Maybe we will get some painting done, on canvas. And remember, Dance like No one is watching! I do and I will this weekend. I will dance until I ache all over. I will get a chance to wear my new midevil/gothic dress this weekend. I was talked into wearing a mask. Yeah, like they can't figure out who I am with my mop of red hair. I figure it has very little to do with anonimity, just appealing.

Tuesday, October 21, 2003 7:43 AM CDT

One year post symptomatic. What an odd thing to have to say. I wasn’t sure what Saturday would bring for me. I am living a miracle.

Savannah and Cassie took Jerry on a date Friday night. I had to attend a Kiwanis function in Fort Smith. The girls took him to Savannah's favorite place to eat...Ryan's. He said they were so well behaved...even someone from another table came over and told him his girls were well behaved. I asked him WHO exactly he took to Ryan's? Didn't sound like my children.

Saturday the girls went to Whitney’s Halloween party. The adults were told to go have dinner somewhere. Twist my arm. The girls were in very good hands. After the party was over, it was hard to get the girls to leave. Savannah had shared she taught mommy how to dance (the sensual dancer). Yeah, we showed them. Cassie had to show how she taught me the more Britney Spears/rap side. It had to have looked hysterical. What a combo.

The pumpkin was carved and painted. Fluffy’s portrait is completed. And my portrait is well under way. Oh, I even took a three hour nap on Sunday after church. We were busy but quite relaxed. I guess I needed the least amount of stress this weekend. The 29th will be bad and also the 1st will be bad. But I thank God every day for what he has allowed me to have.

Tuesday Kelly will be laid to rest. Please pray for their family. Their anguish is beyond belief. You can never prepare enough. It is just impossible.

Friday, October 17, 2003 10:11 AM CDT

The weekend is just about here. I have been very busy at work, and at the second in between project, so I thought I would post an update.

Donna and crew were going to visit us, but Corey has RSV. So we have gone to plan B. I have to attend a charter for a new Kiwanis club tonight. This falls under the category of President and pres elect stuff to do. It will be fun and I am also honored to be a part of it. Saturday evening the girls are now going to a Halloween party. They will get to wear their costumes. Maybe we can carve the pumpkin before we go.

The last week or two have been quite difficult for me. But today I woke up feeling at peace. Does this mean I got my frustrations and sadness out or I will hop right back in and just be a basket case? Who knows? I also have a knight who rescues me. He has NEVER said the wrong thing.

I have been thinking back on the things people have told me. When they say something wrong, I divulge nothing else. They want to know but bite. I don't want to scare anybody away. I know those who really care and they don't hurt me. For ex. If someone tells me...don't give up hope...I get insulted, like a mother will ever give up hope, so obviously I am lacking as a mother. OR she looks great, maybe she has beaten it. They don't even care enough to learn about the disease. So then, I am pessimistic and all doom. Yeah, thanks! Actually, I am quite the opposite. What is wrong with accepting a terminal illness? It certainly doesn't mean you have given up. I think it adds to the quality of life. And that we have in our household.

Instead, they could say...Savannah looks great! (stop, no more required) or what a miracle to see her back to her old self (stop, no more required). It acknowledges the positive without pulling in a negative. It acknowledges a fact. I like when people see how far she has progressed, and how well Cassie has been handling her role for an entire year. I overflow with pride for both my girls.

Wednesday, October 15, 2003 8:12 AM CDT

I wanted to share another loss.

Dear Support family:
At 5:45 p.m. our son KELLY PATRICK RYAN joined all the angels and I feel he is telling jokes, singing them songs and wanting to draw them pictures. And of course trying to run the show. It was so fitting that he took his last breath with a close friend sitting next to him telling Kelly how much he meant to him and his family I was at the hospital with my daughter from 9:00am (she was to be induced) but at 4:00 pm I just felt I needed to be home. I had a chance to give Kelly a final hug and kiss, stroke his hair. His kitties kept watching Kelly's face, not getting too close. I stayed up all Monday Night talking to Kelly so I am at peace knowing I said all I wanted to say. TO ALL THE LITTLE HEADS OUT THERE, KELLY IS GOING TO BE WATCHING OUT FOR YOU.
Molly Ryan
family of Kelly Patrick Ryan
-----------------------------------------------------------
This is a post he wrote me a long time ago. He had sent me a childrens book he wrote on brain tumors. He touched my heart by including Savannah with all the other children. I wept and wept over this. All the other children are angels now. What he had not know was that THESE children had already touched me. I had been in contact with their parents. Of all the bt kids he wrote the ones I was familiar with. One of the first miracles I realized.

you can read this with adobe acrobat
it's a book i wrote and illustrated for children with brainstem tumors inspired by Liam Tamayo-James-Corbin-Rachel-Aunt Crazy-and Savannah. i've been fighting too 5 1/2 years bsg pons-rad-decadron-temador-laughter best wishes and ignore the type o. i hope she gets a giggle or two
kelly

when Kelly was no longer able to post his mother Molly stepped in. She is an angel in her own right.

Kelly is at peace. He is healed. He had touched many children and many parents. I mourn but I am also relieved his struggle is over. He will be there for Savannah as he was down here.

Monday, October 13, 2003 12:44 AM CDT

Happy 65th Dad!!!

The Hurley girls ventured to St. Louis this weekend. We left Thur after school. The young’ns wanted to stay in a hotel, so I accommodated them. We got the last room at the inn. They thought that was so exciting.

Friday my cousin, Susan, visited. She went shopping with us. The Tamayos sent Savannah the rest of Liam’s gift cards to KBToys. We were there for over an hour. They had to look at EVERY item in the store. Savannah told Cassie she could have one of the gift cards. These sisters are so including of each other. I am a very proud mommy. Now for the part they hate. Thank you cards. But I tell them it is necessary.

Saturday we celebrated my dad’s birthday and my parent’s anniversary. We then saw The Lion King on stage. The costumes were brilliantly designed. Overall excellent performance.

Savannah has been puny. Dr. Mom thinks it is constipation. This of course starts on the road Thur (10 miles outside Russellville). She was cramping then vomited then diarrhea. I got a dose of Myralax in her yesterday evening. Hopefully this will all work itself out, so to speak. Her cheeks would flush (almost like a rash) and they would be on fire, but her forehead remained cool. Then her head seemed warm but her cheeks were fine. Couldn’t ever take her temp, we were on the road. She just hasn’t been herself all weekend. That always scares the bejezzas out of me.

I was so happy to get back. I missed my artist.

Thursday, October 9, 2003 8:56 AM CDT

Pam earned her wings. Please visit her web site. The link is on this page.

Leave a message. That is so very important. Even if it is just an, 'I'm sorry'.

She is now healed and now at peace. And one day she will embrace my daughter.

Monday, October 6, 2003 12:52 AM CDT

What a terrific weekend.

I have determined Savannah is completely back. Although she speaks her own language, literally, a lot. Pupils still ever so slightly not matching and when tired her left eyelid droops a bit more. But this weekend the personality of my ‘spitfire’ had returned.

Both the girls asked Jerry if he was going to spend the night on Friday. He informed them that this is inappropriate unless he is married to their mommy. God Bless the man. So, instead he arrived at 8:30am with groceries to make breakfast. Savannah wanted biscuits and gravy. Their momma might be a damn yankee, but my children are not. Cassie worked and worked on school projects until lunch. Savannah asked Jerry if he would take us all on a date. ‘It would be my honor, Miss Savannah.’ He took us to the movies.

Sunday early afternoon we had a cookout with his parents. The girls whined about leaving until he told them he would stop by in the evening. He brought his paints. He and Cassie then painted Fluffy, Cassie’s chick. There was also tickle time, dancing time, and quiet time.

This really freaks me out. I cannot EVER remember feeling so comfortable with another human being…and so quickly. Of course, the girls probably have something to do with this. Savannah just glows. And is more her old self in his presence then at any other time. I have heard that the better the daddy, the sexier the man. I thought this was weird, but I think I understand.

Chemo is tomorrow. Then the two week break. Savannah asks daily about when chemo is over and her port can come out. I have to be honest and it hurts me as well as her. She feels fine now. This monster is cruel.

Friday, October 3, 2003 2:45 PM CDT

please do the happy dance with me.

just got the results of savannah's endo test regarding the dex.

her adrenals are functioning properly!!!!! yeah yeah yeah yeah

if you remember i had concerns on secondary adrenal insufficiency.

i am so relieved. one less dr to visit.

now if we can get the kidney stone to go away.

and everything is going very well at our household. cassie and savannah had their first cheerleading practice yesterday. they are looking forward to halloween.

halloween will be difficult for me. last year savannah had just been diagnosed and was still in the hospital. that memory will be ingrained from here on out. i even asked their daddy if he would take them out. i honestly don't think i can do it. she became severely symptomatic on oct 18th. a year post dx is almost up. she will beat the average. i am so thankful, yet my heart breaks for those children that balanced out the short end.

ok, i just went from happy to sad in one post. i'm a mess today. yesterday was bad in the afternoon, too. mind going places. hurt so much. i had a knight rescue me yesterday evening. tonight i will have my girls to hold.

Wednesday, October 1, 2003 11:12 AM CDT

Amazement…………………………….
Monday night the girls wanted ‘my friend’ over with his dog. While visiting, he asked their permission to date their mother. Cassandra says sure, okay. Savannah beams and says yeah you can marry my mommy, too. Jerry and mommy say, beer time. I still haven’t stopped laughing. These girls let you know if grandma on the phone is interrupting their time and now Savannah is trying to marry me off.

Tues was chemo day. Savannah was just taken to a special music sing a long and I had stayed behind to work in the infusion room. Then a nurse says you have a special visitor. Jerry came to visit Savannah during chemo. He took the afternoon off to see what Savannah goes through. I took him down to the playroom. She was singing along until she sees me. Smiles, then sees Jerry. Her face LIT UP. She beamed, glowed, she just radiated. He went in and sat by her and got his own little egg morocco. I watched for a couple minutes then joined them. We stayed until her flush was over and we needed another dose of Zofran. One of the nurses comes in to deaccess her and asks whom her visitor is. This is mommy’s painter! She cracks me up. She asked if he would come home with us. So he followed us for 1½ hrs on the highways. He then surprised Cassie by being there when her bus arrived.

I will skip to later in the evening. We started the painting. We decided to make the girls a part of it. They were in heaven. They picked out my clothes. Then they were ripping my clothes off. I hollered at Cassie…my bra stays on…oh yeah! They put on my dress, took my hand, and set me on pillows posing me. Cassie kept telling me do this do this…all seductive poses. No!!!!!!! Savannah to the rescue. Then the sketching began. They both worked on it as well as Jerry. Part of me wants to say it was one of the most incredible family times we ever had. But the other says WHAT in creation am I thinking. They made me the center, but instead of making me uncomfortable, I was loving it. I can’t even put into words how excited and overwhelmed my girls were. They were caught up in all the activities. They were doing something very special for their mommy. And in actuality it became all about them. My girls in all their glory. I am so blessed.

Thursday, September 25, 2003 1:01 PM CDT

This is off the brain tumor subject. It involves Savannah and it very much surprised me.

I asked Savannah if she liked my friend XXX (he was the one who painted them). Oh yes mommy. Do you think he should be my boyfriend? Yes, of course...but you said you didn't want a boyfriend. That's right, but I am asking you what you think. Yes, he should be your boyfriend. I changed the subject then and asked if she thought Cassie was alright (she stayed with daddy and her new chick last night). The girls are seldom seperated. Yeah, but she will be lonely, daddy is never with us, he is mowing, burning, or on the computer. AND he makes us watch TV in our room every night. CRAP...my heart sunk. [I never ask anything. It's amazing what they volunteer.] Is that why you like XXX? Yes! (and a big grin) He plays with us. Even YYY (daddy's girlfriend) doesn't spend much time with us. I just wanted to scream...DO YOU HAVE ANY IDEA OF WHAT YOU ARE MISSING...THE SMILES, THE LAUGHTER, THE TENDERNESS, THE FUN, THE LOVE. It is their loss.

I do not believe in mixing my dating with my children. This was origionally stricktly a friendship. I am in a state of confusion right now. They like him there. No TV. Family games. And just fun. He needed to know their personalities for the portrait. Plus Savannah says, you are happy now mommy. I can not count the times she has dried my tears, carressed my face, and told me she will never leave me. I wonder if he is an angel sent to me and my babies or a cruel joke to test my beliefs. Yes, I am comfortable with him and comfortable with him around my children.

The portrait is now done. He took a picture of it last night. So now what? Is he cast out of their lives because he has graduated from friend to boyfriend? Do I turn my back on a possible relationship that might actually help me in this journey? I can still date him and not involve him anymore with the girls, but they want him there.

Wednesday, September 24, 2003 11:31 AM CDT

Savannah did soooooooo good with chemo yesterday. No psychosis! Yippee. She did just eat M&Ms for dinner. She layed on the sofa for about an hour puny, and then she was in a wonderful mood.

They received a painting from a friend. It is a beautiful landscape. I just can't stop admiring it. Savannah then played her song for him while setting up a tea party. I got it on videotape. It was just a wonderful evening.

She slept good. No crying episodes in the middle of the night. No tossing, turning, or kicking. She woke up in a goood mood for her (she came in the bathroom...I touched her shoulder...and she said 'don't touch me'). Mind you, we cuddled and touched all night long. She said night is over, mommy. Yeah, I know sometimes mommies can be sooooooo stupid.

Monday, September 22, 2003 3:14 PM CDT

The weekend was too short. Due to the drs visits last week, daddy and I split the weekends. Saturday all I did was laundry and ironing. I had the girls Sat evening and Sunday. BUT I felt so cheated on Sunday. It just wasn’t long enough.

The Pageant party was such a success. The eye piercing screams from a bunch of little girls echoed throughout the house. All little prisses in tiaras making beaded jewelry. Absolutely adorable. Us mommies didn’t have enough time to do grownup girlie talk, which we were all wanting to do but didn’t get an opportunity.

Yes, Lisa. I am loved. If I should die tomorrow, I would leave this world knowing I was truly loved by many people. I am so humbled and I don’t deserve it. Is it because my eyes are opened? Because of my little princess?

Savannah and Cassie bickered all day yesterday. I just wanted to scream. But they CAN so I just joined in.

ie. you are just a poopoo head…well, I’m not talking to you anymore…well, that’s just fiiiine with me…do you have a blue?…yeah, here you go…oh, I forgot, I’m not talking to you…good you bozo breath.

This was quite histarical. Yeah, someone out there would think, Oh God, this mother is allowing name calling. Well to those, when your child is not capable of even sitting up yet alone speaking, name calling is music to my ears. There, ‘piehole face’.

Thursday, September 18, 2003 11:49 AM CDT

I can breath...well almost.

Monday's ACTH test went fine, except the baseline bloodwork was screwed up. We had to do that prior to her MRI on Tues. No results from that, yet.

Tuesday was looooong. We didn't get home until after 7:30pm. I actually got preliminary results. Stable maybe a little smaller. Wonderful wonderful news. UNDERSTAND, I did not overreact. Asked Dr. Becton second course action. He said they use temedor. I was so relieved. Chemo was rough, but she got through it.

Cassie’s allergy testing was Wed. She only reacted to dust mites. So she did not need further testing down her arm. The maintenance dosage will now be backed off to once every three weeks. The allergy shots are working. I am so proud of her.

Last night the girls were so adorable. I am so blessed. They bicker, yell, and love on eachother. Savannah walks up to Cassie, puts her in a headlock, kisses her forehead, and says I Love You very softly. I melted. Hold the tears and praise God for my beautiful gifts, my girls. They never knew how much that touched my heart.

The pageant party is Saturday. Estrogen overload. We are psyched. We are ready. You teach your children looks are not important then you indulge in pure girly stuff to be beautiful. Us women are funny.

I have a lot of other stuff going on in my life right now I am trying to deal with. Some rough choices. I keep taking deep breaths and keep reminding myself what is really important. To all of you, a wonderful weekend.

Monday, September 15, 2003 7:56 AM CDT

Thank you for ALL of your encouraging words in my down time. They provide me strength to continue.

Today begins the week of doctors and tests. We begin at Day Medicine for her ACTH test in Little Rock. After school, off to her ENT to check her ear. Tomorrow the MRI followed by chemo. Wed. Cassie goes to LR for complete allergy testing. Thur I pick up cookie dough and Cassie has her first cheerleading practice. Friday I should be able to breath, but the radiologist report should be back by then.

The Childrens Cancer picnic was great. So many of the nurses, social workers, doctors, child life specialists were there. Savannah kept leaving her lunch, run and hug on someone. They all said hi Savannah and hugged her back. Most even knew Cassie. The girls grinned the whole time. This team or family was the same loving group, but it was different outside the hospital setting. These people truly love these kids. I just don’t know how they do it. It was emotionally taxing to me. After I dropped the girls off at daddy’s I just wanted to bury my head under the pillows on my bed.

All the cancer kids wore ‘I’m a SURVIVOR’ ribbons. They were all being kids and having a wonderful time. Then the little demon of reality peaks in, ‘hey Lisa, some of these kids still will die.’ How many? Half? Crap! These are CHILDREN for God’s sake. Children! Our future! These innocent smiling faces who know more about life then we adults can possibly imagine.

Saturday evening and Sunday I actually was able to relax. I actually allowed myself to be pampered. For those who know me, know I have a HARD HARD time with this. I didn’t sleep very long last night, but I got up feeling good. Now Monday and I am having heart palpations. Yeah, stress at its finest! I told myself it can be flaky until I leave for the hospital. Then it needs to revert, so I can be mommy.

Thank you to everyone who posted a note or emailed me offline. I don’t know how I could live sanely one day to the next without you.

Sincerely,
Lisa

Friday, September 12, 2003 9:04 AM CDT

Yesterday was not good for momma.

To quote Eminem, “Times up. It’s over now. Snap back to reality.”

I see subtle changes in Savannah. I doubt anyone else can see them, but I do. Am I just seeing things? Or is it real? Do I doubt my instincts? I pray I am wrong. Oh, how I pray. Please God, don’t take my baby. She has been talking with a thick tongue all week long. She has been having mood changes the last couple weeks. Not angry but crying for no reason. She seems to choke on liquids much more. She had an accident this morning. She is obsessing bad again. She started in on Wed. about going to daddy’s. Crying and not wanting to leave mommy. It was three days away. She tells me at dinner, then while in the bath, then in the bed, first thing in the morning. I tell her over and over, daddy loves you, and he needs you. It’s what she did when she was not good. It is Little things like these creeping in.

Her eyes are dialated the same. She is not really more ataxic then before, but she has fallen a couple times this week. Facial paralysis is not present. Her schoolwork is awesome. She can still urinate when she tries.

I have had to think of difficult decisions I will have to make. Will I deny her steroids? They stole her quality of life. They will not save her life, so why take away from her quality. For those who know, she will probably receive some, but I will have to fight to keep her off high doses. And I don’t want dex. What about changing chemos? I have one I may want to try, but will the hospital administer MY choice? Who the hell am I to choose the chemo for my child? Or forget treatment and take her home. I know it is early for this, but I can’t wait until she has reoccurrence before I consider anything. I need to use the time granted me, to figure out what is best for MY offspring.

9 month post MRI is Tues. Those with pontine gliomas know what this means. The honeymoon phase is wrapping up. I am down, but I certainly haven’t given up hope. Some kids don’t make it to six months post rad…therefore others have to make it past 9 months post rad. Most have reoccurrence between 6-9. It is the Bell Curve at its finest. You know, average time it takes for the beast to win. 12.1 months from dx. We will beat that.

Last night Savannah asked if I was crying (I hadn’t yet…I was fighting tears…didn’t want my babies to see). She said come here. She cradled my face in her hands, kissed my forehead, kept wiping my eyes, and kept telling me over and over again…I will always be here for you mommy. I will never leave you. Now explain that? Let’s swap roles…who is mothering who? I NEED my baby. Her love, her compassion, her commitment is profound. She would make an excellent wife, mother, employee, and citizen. And it is stolen. Stolen not just from her or me but from the world. That is a sin to me. Explain THAT to me.

Last night in bed, she asked if there will be any other kids with stem gliomas at the cancer picnic. She has NEVER said what she had before. My heart is being torn. She still wants to make three batches of brownies. She wants to take care of all the cancer kids, and she is one of them, and she won’t survive.

Tuesday, September 9, 2003 11:42 AM CDT

This is national Childhood Cancer Awareness month. We are planning on going to the ACH, Candlelighters, and CARTI sponsored picnic in LR on Sat. Savannah and Cassie want to go. Savannah said she hoped Kaelei would be there. I told her Hilary lives in AR, too. 'Will she be there?'. Hopefully, we can meet up with some internet friends who have touched our lives as well as kids we have met in clinic and/or radiation.

The girls told me they wanted to make brownies to take. I tell you, the beauty and compassion of children floors me. I told them they will have refreshments there for all. So sweet.

Then Savannah pipes up...You don't want to have cancer. Especially if you are a kid. It gets in your head. It stays there. It can hurt you every single day. Then you have to get radiation. Then you have to get chemo all the time. Yeah, mommy, we have to go to the picnic.

I couldn't believe this was flowing from the mouth of a six year old. So matter a fact. It is wrong. Our babies have had to grow up in such a horrible way, staring death in the face everyday. Crap, that just pisses me off. Now I'm venting. Can you tell Savannah's 9 month post rad MRI is next week?

Hugs to all,
Lisa m/o Savannah dpg

Monday, September 8, 2003 8:06 AM CDT

What an awesome weekend. Brooke, Sydney, and Lisa spent the night Friday. The girls made cotton candy for over an hour. We watched sugar fiber float to the ceiling. Savannah and Cassie asked all day Saturday, when were we going to do it again. It’s not fair they had to leave early. They couldn’t leave without breakfast. They still had games to play. They still had STUFF to do. You know, stuff. Time was too short. I didn’t have a chance to make a big breakfast. I feel I cheated our guests.

I finally got my sink replaced on Saturday. I have wonderful wonderful friends.

My friend who is painting a portrait of the girls came over on Sunday. He needed better eye color and hair highlights. He even let the girls paint some of their hair. Amazing! I did get some of that on videotape. I was a nervous wreck taping. I couldn’t even watch most of it. This man has incredible patience. He said their painting would bind them more to the painting because they were actually a part of its creation. Wow! How many people have a song written for them? How many people have a portrait done of them? The gifts are tremendous. I thank God my eyes are open. It took a lot of training for that, and I thank the friend that taught me, too.

Sunday afternoon was bad for me. I normally can control my inner turmoil until the girls are gone. But I started to spiral. Pre MRI jitters have begun. I hear the hem/onc dr saying, ‘the nine month post mri is the critical one.’ Sorry, I went down. Time is up! I am scared sh^%$&ss. Audrey came right away. The girls were fine, happy, playing, and mama was bawling in the bedroom. Same prayer different verse…God please don’t take my baby! I’ll do whatever you want, just tell me. Please take me…she is too little. I need her more than you do. Let her LIVE! She looks normal…she acts normal…and there is still a lemon size tumor in her head that is going to take her life!

I am better today. But I admit…all of that soul tearing wore me out. I was ready to go to bed at 5pm. Hopefully, I can function better now. Next week will be a blur of doctors and tests.

Thursday, September 4, 2003 8:04 AM CDT

Ashley is recovering quite well from her surgery. I am so proud of her. What fighters our littles are. Please visit her site. The link it on this sites home page. Please please please pray for Pam. She is fighting so hard for life right now. The tumor seems to be winning. It's not fair for her infant daughter not to remember her mommy. Crap...I knew there was a reason I wore no makeup today. Tears again.

I've been keeping busy with Kiwanis and work. Actually I've been swamped at work. But I much prefer to stay busy.

Savannah's outer ear infection has not cleared up. I switched drops again. It has started itching her real bad. Last night she began coughing. Back to the dr. Don't want another ruptured ear drum. I am going to ask her ENT about a possible yeast infection in her ear. We fought trush almost her entire time on steroids. I really think she has had 'swimmers ear' for several months. I will post with results.

Tuesday, September 2, 2003 10:22 AM CDT

All is well with the Hurley girls. We had a wonderful labor day. We did very little of it at our house. Of course Savannah would disagree. We worked long and hard on her sight words and read her book several times so she could take her SCR test today. None of this was done while away from mommy over the weekend. This made it so very hard on her. I hate that for her.

I worked at the office, got another carload of stuff for Goodwill, wrote thank you cards for MACS, cleaned more in the attic, and did normal weekend cleaning stuff. I am pooped.

It is close to a year now that Savannah became symptomatic. I remember back then thinking...she must be adjusting to kindergarten...maybe she is bored in class...what am I going to do if they want her to take a daily narcotic. I would have accepted Ritlin anyday over a massive pontine tumor. Life was so simple then. Now it is a whirl of drs, MRI, medicines, therapies all added to daily life. And things are good now.

This month we have the pivitol 9 month post rad MRI, endo testing for secondary adrenal insufficiency, renal dr, chemo, complete allergy retesting for Cassie, my dentist...anyone want to add to it? I think we will be going more then coming.

I don't know if I am scared sh*&^#@s about the upcoming MRI, or if I am comfortable with how Savannah is doing. I am unnaturally calm. But I feel a weird sensation in my blood...like a stirring. A foreboding? Am I anticipating my world collapsing around me again? Can I cope? Savannah is her old self...bouncing around the house. A little lady! My princess. She is speaking in bigger words then ever...but not they don't fit context. Yesterday she told me she 'wasn't bizarian, she was ciscerean(sp?)'. I couldn't help but laugh. I explained what the latter was. She didn't sleep worth a crap last night. Tossing and kicking. Yeah, I think I am scared.

Please pray for Katia, she is out of remission and fighting again. Pray for Ashley, for her recovery from her operable inoperable brain surgery (I love saying that). Pray for the Angel's parents. The ones I know are all hurting very bad right now. Pray for Pam, she is FIGHTING to breath on her own. Pray for Steve, his symptoms worsen even though his tumor is supposedly stable. Pray that we all find additional peace, comfort, and strength for endurance.

Thursday, August 28, 2003 7:29 AM CDT

Ashley had sugery again yesterday. I was on pins and needles all afternoon...and kept checking her site for updates. I knew it would be too early for results, but I couldn't help it. We get so close to other kids fighting the same battle.

The surgery was a success. I am so tickled that this was the second operable inoperable brain stem tumor surgery. The surgeon was able to pop the cyst. Oh, I hope it stays popped. Check out her site for updates on her recovery. www.caringbridge.org/il/ashley . Please please please pray for her recovery. We all need to see miracles. It seems like little ones are happening more and more. Time is what we need.

We decided to drop Wed. PT and OT for now. Savannah is doing well. Wed have gotten to be so hard on her. Tues is chemo day. Wed she is still kind of off. Plus she has to complete work missed from chemo days. That is too much for a Wed. I think this will relieve some stress on all three of us.

She still has her outer ear infection. The new drops don't seem to be working. I will change drops today. I want this cleared up. If this doesn't work, I will suggest checking for a yeast infection. Dexamethasone is notorious for creating yeast infections. We couldn't get the thrush under control until she was weaned off the daily doses. Remember she still gets a large dose with chemo.

Tuesday, August 26, 2003 9:08 AM CDT

Savannah saw an endo yesterday afternoon. They asked me why I thought she should be here. I told them I wanted her tested for secondary adrenal insufficiency. I answered a bunch of questions for them. Yes, they do want further testing.

The dr was saying depending on the type of tumor depends on where we go with this. I said, of course, if rad was full brain you would have a lot to test for (ie. thyroid, growth hormone), if the tumor was on the pituitary they would have different issues. But gliomas on the brain stem will possibly suffer from dexamethasone issues. He said correct! Yippie! (thanks everyone on my support groups for making me so smart). From that moment he was trying to get a time for testing and he has an idea...she is off the dex...except for chemo. What he thinks may be happening is that she produces fine until the dex during chemo. Then her adrenals shut down. Slowly recouperate. Then bamm chemo day again. So she has no time to fully recover.

She has been fighting an ear infection now since July 4th. I let them find that on her exam. Busted ear drum, 2 rounds oral antibiotics, 2 rounds of different antibiotic drops, and goop suctioned out twice by her ENT.

She will have the ACTH test, but they only talked about one draw. They will do it the last day of her two week chemo break, on Sept 15th, tentatively.

For them having a 6 month backlog, they are getting around to this real quick. Her onc wasn't excited about me taking her over there. Savannah's daddy even got quiet when I told him they wanted her tested. Like I have been overreacting or something. AAAAGGGHHH!!!! I have to get over this. Why do I care what other people think?

Friday, August 22, 2003 8:30 AM CDT

What a mess the last couple days. To a parent with normal circumstances it would have been traumatic. To us parents it is just 'A day in the life'.

Savannah fell at OT, and hurt her arm really bad. She had mobility, no bruising, no swelling, and tremendous pain. Managed to get the pain under control. IF IF IF it was broke it had to be a hairline fracture. Now the drs.

Called her pedi, but he was out. Other dr said, bring her in ASAP. We will xray it. If it is broke she needs to go to Children's. WHY??? For a broken arm. Her circumstances. WHAT does her brain tumor have to do with a possible broken arm. It sounds like they were just scared and didn't want to deal with it. The logistics of what they suggested was plain stupid. Call Childrens. When I finally got someone the answer came back to take her to the er. If you think she broke her arm get her to the ER. Okay, now I'm a bad mother? It is not like there are bones sticking out. I wouldn't want to send me dog to the ER here unless necessary.

Now I was put into the situation AGAIN to have to buck all the drs and do what was best for Savannah. Took her for an xray to the local clinic. Had them refer her to an orthopedic dr in town. Saw him, and NO broken bone. Definite elbow trauma but nothing broke. It was funny. I think his impression was this was all blown out of proportion. Yeah...it was. I couldn't believe this was all happening around me. It pissed me off and made me want to laugh at the same time.

I am glad I followed my instincts. It couldn't have worked out better. She is in a sling and taking a pain med. And NO cast.

Wed. Kiwanis program turned out good. I had to hold back tears in front of 60+ men and women. I only started to cry once. Give Kids The World has me heart. Many said it was such a good program. Good. Now volunteer a week to work or send a check. Just think of the check you could send from NOT golfing 1 time. Please God...let just one help enough to make a difference. For those who don't know check out www.gktw.com . That is just the tip of the iceburg. Only if you have lived the magic there can you understand.

Wednesday, August 20, 2003 8:48 AM CDT

Chemo was yesterday. Savannah woke up in the morning saying she didn't feel good and didn't want to go to chemo. She was resisting Charlotte accessing her. Said she felt awful all day. She keeps asking me, exactly how many more weeks of chemo? I think Savannah grows weary of this treatment protocol. I continued the Zofran every four hours. She made it through the night without crying. I do know last night she was hurting from chemo. Who wouldn't. They inject toxic chemicals into your bloodstream. We are going to get snowcones after PT and OT today.

My birthday came and went. I had the best party ever. A few very close friends at my house. I took the girls to Valleyfest for a while. It was so hot we left after just 45 minutes. Savannah was wearing out fast.

MACS mail keeps coming in. It is wonderful. And I truly love her chemo angels. They are so dedicated.

Today I give a presentation to Kiwanis on Give Kids The World. I hope I can pull this off without crying. Yesterday I was writing my speech while in the infusion room. The tears kept pouring down my cheeks. I hope I do okay. I am scared, but I hate public speaking. The only reason I am torturing myself is because of the children. God Bless them all.

Friday, August 15, 2003 8:13 AM CDT

The tooth fairy exchanged Savannah's first tooth with a $10 bill. I told her she must be extremely special. (Of course she is)

Chemo went well. I told Mark to have them give her another dose of Zofran before they left. Sure enough, no psychosis. She slept horribly though...crying and kicking. This next Tues, I will try Zofran every four hours through the night. I think the internal pain from the chemo brings out the steroid craziness. If we can keep the pain under control then maybe the steroids will remain at bay.

The girls are back in school. I drove all the way out for their first day back. They have two kindergarten classes this year. Savannah has her teacher from last year. She has never questioned returning to K. I just couldn't see her moving to 1st. She told me she made new friends. Of course, she will have recess with all her classmates from last year. I received homework from Cassie's 3rd grade teacher to do this weekend.

Today is Mary's day. I used to hate it because I had to to to church another time. But now I love it. I have peace on the Blessed Mother's day. Maybe because she lost her son, too.

I have a busy weekend planned with and without the girls. They will be with daddy, but I am taking them tomorrow (it's my birthday) to Valleyfest. They want to hit the rides, and eat junk food. And so we will.

Monday, August 11, 2003 4:09 PM CDT

Savannah lost her first tooth yesterday morning. I didn't even know she had a loose one. She was so excited. She said, 'mommy, I just pulled it out and it didn't even hurt.' I asked if I could come see it. She said, 'yeah, and bring my mail' (MACS mail). I got my camera and all the mail and off I went to her daddy's. She was so very excited. I took a couple pictures of the milestone. Then came the mail and packages. We went through every single one of them. It seemed I was there forever, but she was not to be denied. We sat on the floor, and she propped her legs up on me. That child always has to touch me. I LOVE IT!!!

I am jealous that she was with her father when the tooth fairy came to visit for the first time. Well, maybe he will stay with the girls instead of leaving them alone while he rides his four wheeler. Ouch, that wasn't nice, but I am furious.

Tomorrow is chemo day. They will check the progress of her outer ear infection. She wasn't digging or anything yesterday. After chemo she gets to go to Kindergarten open house. She is very excited. She will have the same teacher from last year. I love that school and adore the people associated with it.

Thursday, August 7, 2003 12:54 AM CDT

Swimming party was a blast. Savannah bounced around the whole place. When she wasn't bouncing, she was going down the slide and swimming to the side to repeat the cycle. Cassie was out of the deep water long enough to wait in line for the diving board. Savannah's appetite amazed me. The steroids may have helped. They also kept her up and hyper all day yesterday. She did sleep better last night. Baby had to be exhausted. It took her 45 min to get out of bed. She normally hops right up. She didn't want to eat this morning. Steroids wearing off. Only a kid could do that. Us adults would eat anyway.

Cassie woke up with a little lung tightness. I had to dig out her asthma inhaler. Hope she can kick this fast. Her peak flow just puts her in caution, so she just needs to be monitored.

Summer is wrapping up. Savannah is well. Thank you God. Thank you for hearing the prayers from Lourdes to a child's bedtime prayer. They all count. They must because Savannah has returned to her old self. We live for you.

Wednesday, August 6, 2003 4:10 PM CDT