Monday, October 15, 2007 2:54 PM CDT

DOES ANYBODY NOTICE ANYTHING DIFFERENT??

No? Thanks for noticing her unmade bed and dirty closet. Anything else???

3 and 1/2 long years and over $5,000 later...the braces are off!!! It's been an exciting week. She has this tiny little mouth, so even her biggest smiles aren't that big. The orthodontist sent us in the mail today before and after pictures. If I can get them scanned I will have to share. Bless her heart, there was no doubt she needed braces!

Dale is out of town and everyone is running wild around here. My only salvation has been to slip off,shut the door and get on the computer. I need to go get everybody in bed however. So, hopefully I can update more soon. Just wanted to share this!!!

Dale has been loving all the comments about his picture. I forgot to tell you that after I took that picture, Riley says to him "16 years of marriage and you still got it!" To which I wanted to say Puh-leeeze!!

Enjoying the rain as much as possible...more to share soon.

This is the best before I could find..she quit smilling with her mouth open right after that because it really bothered her until she got the braces










Well, fall break has come and gone and we are all back to the routine. Everyone returned safely which is the best possible ending. Our weekend get away to Nashville was almost perfect, but as things always go for us, we had some minor setbacks. Poor Reagan got strep throat yet again (yes, she did just come off an antibiotic). This time, she was really sick. Friday night she had a fever of 104. We were able to get her in to a doctor in Nashville, but the new med just didn’t work as fast and she wasn’t able to go to with us to see the Preds on Saturday. I knew it was really bad when we went to the Melting Pot Friday night. I love this restaurant; it’s a fondue place right downtown. At the end of the meal, the last fondue is a big pot of chocolate and they bring every sinful thing in the world to dip in it. Reagan had no interest. For those of you who know her well, you now realize how sick she was.

Thankfully, she was able to stay at my parents but we sure missed her and felt so bad that she had to miss. Dale had enough Marriott points for us to stay there all weekend. The amazing thing is that they have both an indoor and outdoor pool, and we were swimming outside without problems in the middle of October! We did get to experience a little fall weather last week, but I think it’s gone again.

We have so much fun going to the Predator games. Who knew I was such a hockey fan!!?? Dale is a sports fanatic! When we first got married, our TV stayed on ESPN. It drove me nuts…it didn’t matter if there was tidily winks on….he was into it. His first love was NASCAR. This city girl had such a hard time with that one. I tried. I even went to a few races with him and had much more fun than anticipated, but never could fully be a NASCAR girl. His interest waned from that as he became an even bigger Kentucky fan. That was also hard for this orange girl, but living in a house full of UK fans has started wearing on me and I’m not that disappointed that Riley now says she really wants to go to UK! She even got to go to midnight madness last Friday (yes, she did Nashville, Hilton Head and Lexington in about 9 days! (I know you are loving it Megan). I won’t even bring up the whole LSU game, although I found myself excited! But Hockey, now that I can get into! The game we went to this past Saturday was disappointing, they were definitely down, but we have decided not to be fair weather fans! Watching them easily handle Colorado last weekend was exciting (sorry Holly).

Thanks so much for all your sweet comments about Riley’s autobiography. I think it’s obvious what proud parents we are. I had never even asked her what she made on it but found out it was indeed a 100, it was always an A to me! I also loved the Distinguished comment! I guess that’s how all Kentucky teachers look at things now!
Speaking of proud parents, I hope none of you saw us out at Target last Monday right before the girls left for Hilton Head. I came close to losing it right smack dab (is that a word?) in the middle of the store!! Monday was the first full day of fall break and we had stayed home all day…..so the little nagging and bickering had already begun. I started giving them the lecture on how they absolutely could not fight on their trip..zero..zilch…nada….no tolerance! Well, they had a little spout right in the middle of Target. Whew! Does fighting wear anybody else out!!! I can not stand it. I think I got my point across as things have been so much better since their return, I know it’s only been a couple of days, but I’ll take it. Of course, I felt so bad when they were gone all week and I’ll I could remember was the 2 hour lecture I had given them before they left and after having almost lost all control! So, please don’t ever think we are the perfect little family….we have a long way to go!!!

I have a mountain of laundry to find a place for. Reese hasn’t wanted to play all morning, so that is what we have done! I should get to work. Our kitchen project is almost complete. I have ordered a new oven/microwave combo thing. It is here and once it is installed…all is done!! I’m really enjoying the new room. No excuses not to have more of you over for supper!

I think fall break was just what we needed. Dale and I had some great quality time together. He really gets me. I know it’s easy to think that I’m doing so well, but he really knows me and wants so bad for me to be happy. As I tell him, I’m incredibly happy. There is so much happiness that surrounds me, yet I’m so sad. Getting to that year mark I guess was a milestone. I know longer have to think, “this time last year”…and it always involved something about Randon. I still can’t believe it all has happened and all we’ve endured. I still have a lot of frustration about why we can’t find answers why we can’t get more help from some of the doctors. Every day, my goal is to let the good, the focus on the good, take more from me that the focus on the sad and the worry. I’m still trying to learn what I believe about faith and trust…but that is a topic for another day.

Love, hope and courage to all of you!

Carol

Here are some pictures from the 10/4 game, before Reagan was sick, and it was Dale’s birthday (thus explains one of the pictures..hey, it was his birthday).







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Wednesday, October 3, 2007 9:56 AM CDT

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Just a quick update to say nothing new really going on here, just a busy week. We are going to get away for the weekend as Fall Break is next week. Riley has her last JV soccer game tonight and although it’s been fun, looking forward to things slowing down a little bit. No big plans…still recuperating from our big Disney trip last fall. As you may remember, Dale got the hockey bug last year and he got it bad. We are going to spend the weekend in Nashville, which will include a couple of hockey games!! Dale is eat up with it! The girls are then going next week to Hilton Head with friends. Poor Reese and I will be stuck here in Bowling Green, but I guess we should be happy for the big girls! (no, I’m not jealous) I’ve been in a very yuck mood lately, so maybe we can do some things here to kind of get ourselves out of the yuck groove and on to bigger and better things!

I was blessed this past week with more precious notes and gifts remembering sweet Randon, including a generous donation to Alex’s lemonade, a beautiful angel wind chime and a personal special treat for me, a Starbucks gift card!! Definitely a way to make me smile! To top it off, there is a new Starbucks about to open right out here by me. I think I screamed out loud when I saw the “Starbucks coming soon” sign several months back! I continue to appreciate the love and kindness that has been showered on me and our family. Please know how we feel so blessed to have such amazing people in our lives.

I was fumbling through some things the other day and out of a book fell this piece of paper. It was a note that our night nurse had left us when Randon was doing great in the NICU. It was the night when I came the next morning and found that she had gotten him a bathtub and bouncy seat. It was like this big reminder to enjoy every normal moment I might have. It made me cry..but a lot of things do. Have I mentioned how much I miss him. Even though I only had him for 9 months plus 2 months in my arms, from the second I knew him, I loved him as if I’d had him my whole life. Isn’t that the way it is with all our children. From the second you held them, you wonder how you had ever lived without them. You dream and hope for them with all you have. I’m really sad. I look forward to the day when I’ll be able to look at the above pictures and smile without also crying. Perhaps that will never happen.

One of my dear friends who moved this summer, found out that her precious niece (her twin sisters daughter) has a brain tumor. We talked about how quickly it all can change. One day she is playing soccer, doing the normal teen age stuff, and in a moment everything changed. They’ve now had to experience the world of ICU, extended hospital stays, the dreaded diagnosis and the fears and worries of all that is ahead. It was reminder of all the families that face it everyday. I often look back at the times we spent on the rollercoaster ride and as I re-live everything, I can’t imagine how I did it, how we all did it. As I know, it had to be only by His grace. I wish no other family ever had to endure it. The life of a family with a critically sick child is indescribable. It is truly a sort of out of body experience. One of the things Cathy remarked to me was how the nurses are amazing. What they face and see everyday and how they care for people…there are no words. I immediately came to think of my Justy, Catrina, Kelly, Hope, Molly, Misty and others, even some I can’t remember their names but remember the impact they had on us at the moment. They were and will always be such a big part of my life.
Please visit Cathy’s niece page caringbridge.org/visit/CarolineH and add her to every prayer list!! They are a precious family to me!

I’m going to try and share something. Don’t know if I can get thru this. Riley told me she had to write an autobiography in language this year focusing on what made her who she is. I had no idea what she would pick although I wondered if it would be about her brothers I had no idea until she came down and asked me if I wanted to read her autobiography she was turning in the next day. Even though it doesn’t seem to hurt them everyday like it does me, I realize that the boys are a part of who the girls are. I will try and share her essay. Again, I haven’t gotten her permission, so be sensitive if you see her out. I’m not sure if being such an open book is what I’m suppose to be, but sometimes I just go with what I’m being led to share. Have I mentioned how much I love this kid?... to a fault actually because I just cant take it when everything does not go perfect for her. I want to fix it all. I’m so blessed to have this sweet precious soul in my life. She is such a better person than me…our little student of the month for August. Hope it touches you.

My precious husband's birthday is tomorrow. I love him too!!! We will now be the same age for a little while!



Randon, My Special Angel
By: Riley Miller
I remember the day it all started, that is, the day my brother Randon was born. I was at a tennis lesson with my friend, Jamie, when her mom told us to pick up the balls, that my brother was about to be born. We were so excited. My aunt picked me up and drove me to Nashville because my brother was going to be delivered at Vanderbilt. She dropped me off at my cousins’ house where we swam and played together while the adults were at the hospital. After awhile, I was starting to get a little worried because no one had called. Finally, my dad called to check on us and I could tell in his voice that something was wrong. When I asked him if everything was okay, he said we would talk about it when he got there.
All these memories came rushing back to me of my first brother, Reid, and I kept thinking to myself, “How could this be happening to us again?” My first brother Reid had passed away in 2002 when he was only six months old. I never saw it coming and even though this had already happened to us once, I still never expected it would happen again. But this terrible nightmare we all had to face once, was coming back to haunt us a second time.
When my dad and grandpa got to my cousins’ house, they sat me and my sister down on the front porch to talk to us. They first explained to us the normal stuff parents tell their children when a sibling has been born like their name, weight, height, etc. But then we got the news that most don’t have to hear, the news that no one wants to hear. He explained to us that Randon was very ill like Reid had been. I had al these emotions come at me at once. I was angry, scared, and worried. I was about to start my first year of middle school and I thought that was scary enough.
My grandmother moved in with me and my sisters while my parents were at the hospital taking care of my brother. She did so much for us; I can’t even begin to start the list of things she did. She tried to make the best of our situation and tried to make our life style as normal as possible. She was always there for me and my sisters when the times were rough. She is the best grandmother any kid could ask for and I was so lucky to have someone like her. She was one of my best friends.
I remember taking trips down to the hospital to visit my parents and Randon. The one I remember the most was the one where I first got to see Randon. He had to stay in this separate room where the premature babies stay and he had to stay in this box like crib. I was upset because I didn’t get to hold him, but just seeing him was good enough for me. He had the tiniest fingers and toes I had ever seen and he had dark hair. I could tell from the start that there was something very special between the two of us. Another visit I remember well was the one where I got to see him open his eyes. My dad argued with me and said that he had blue eyes like him and my two sisters, but I knew they were brown just like mine.
Later on, we found out that Randon needed a bone marrow transplant. Reid had needed a bone marrow transplant too and my sister Reagan had been the donor. The doctors took blood samples from me and Reagan to see if either of us were a match. After a few weeks went by I remember going to the hospital and sitting in this waiting room. My mom went outside to talk to one of the doctors and when she came back in she told us that I was a perfect match! I had the weirdest feeling I have ever felt when she told me. I was so proud to know that I would be the one to save my brother’s life and that we didn’t have to stress about finding a match, but I was also very scared. I didn’t know what to think or do and the only thing I could do was cry. They weren’t tears of sadness; they were tears of joy and a little fear. I kept telling myself to be brave. It was all so confusing for me, but everyone was always there for me and supported me when I needed them the most.
I was sitting in reading class one day reading silently after we had gotten back from the library, when I got called to the office over the loud speaker. My heart sank as soon as I heard that announcement. It was déjà vu all over again. The same thing had happened with my first brother. I left early from school and when I got to my grandma’s house, she told me Reid went to be with Jesus. I gathered my materials and went to the office where I found my Aunt Mindy. We picked up my sister from her school, and then she drove us to Vanderbilt.
When we arrived at the hospital, we went into a room filled with our family and close friends. My Aunt Shannon pulled me aside to fill me in with what all was going on. I will never forget this horrible day or conversation for as long as I live. She told me that Randon was taking this medication that was making him swell and that he was hooked up to a breathing machine. They were the only things keeping him alive, but were harming him at the same thime. They were going to have to stop one of the two and the doctors said the breathing machine would be the least painful for Randon. Tears filled my eyes and I could feel my face getting hot. I had this huge lump in the back of my throat. It wasn’t fair. Why was this happening to us again? I didn’t even get to give him my bone marrow yet. When I asked my aunt if my bone marrow would save him, she said it would’t, and I was crushed by this news.
My mom, dad, sister, and I all went back to say our goodbyes. I asked my mom if I could hold him for one last time. Tears ran down my face as I sat and rocked him. I had always felt a connection between us; we had the same eye color, the same blood type, and we looked alike. I was still holding Randon when the rest of our family and friends entered the room. I just rocked him and kissed his tiny forehead for awhile until my grandma came over and said we should go. I gave him one last hug, gently kissed his forehead, and said, “I love you Randon.” That was a very hard and emotional thing for me to have to do and I think it is the hardest thing I will ever have to do.
Even though my brother was only with us for a short time, he taught me so much. He taught me not to stress over the small things and that there are things in life that are way more important. He also taught me to be brave and to appreciate evrything. I felt like Randon was a special part of me, and even though he is now in heaven, I feel as if he is watching over me, like a gardian angel or something. I will always remember Randon as a special part of my life. He has definitely made me who I am today.



As one of the songs below says: So you want to change the world, what are you waiting for?

Monday, September 24, 2007 10:21 AM CDT

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I tried to put this together quickly this morning. I think you have to click on the volume to hear the music (and turn the player off on the bottom of this page).

We survived yesterday. As I always say the anticipation of the day is in some ways worse than the actual day. Yesterday didnt hurt more but your just kind of forced to relive everything. The last hours with Randon did not go as I had wanted or planned, but I know it was something that I can't dwell on. Saturday, Reagan got strep throat (Reese had it on Tuesday) so I had already figured we would not go to church. Then, they called to say they wanted to come install our new countertops. I thought it was odd to do that on a Sunday, but realized having that to look forward to would be nice and a big distraction for us. So they came and were here all day. Everything is looking great, but going much slower than anticpated. They were here from 9 in the morning until 10 last night. My sink is not yet hooked back up, I don't think you ever realize just how important a sink is to a kitchen! Hopefully, it might all be done except our new ovens by the end of the week. I was really pleased with how they turned out and they guys doing the job have been so nice. Although in the big picture, new countertops seems so irrelevant, it was nice to have a little fun and enjoyment yesterday as I'm watching our kitchen makeover.

I appreciate all the sweet notes, emails, flowers and cards. It means so much that others would continue to follow and care for us. I have to share the most amazing gift we received on Saturday. I brought the mail in which included a package. My sweet friend Megan had emailed that she was sending something, and I had thought, how sweet of her to send me a card. Well, the girls and Dale are all around and I was not really prepared for what my eyes were about to behold. There in this package was the sweetest, most precious scrapbook of Randon Speakman Miller. I enjoy scrapbooking but have never been very good or disciplined enough to do it. I had desired to someday make a nice tribute album for the boys and a place to keep everything, but I've never had the heart. Even if I could have finally sat down and done it, I could have never made it this beautiful. Meagan, you must be a professional scrapbooker. What an amazing, perfect gift to receive on a day like that!! Have I mentioned that I've never even met Megan other than through caringbridge??? I'll I could say behind the tears is that God wanted me to see a little glimpse that I have not been forsaken. So many times in the darkness and in the valley, I have always felt that the only way I have continued to see God's hand on our family is through the kindness of others. I am so overwhelmed how complete strangers can do something so amazing. I can't imagine that I would be a good enough or caring enough person to have done something like that for someone I had never met. What a way to really use your talent. Megan deserves to be spotlighted on Oprah or something, but the truth is, that is not why she did it. She has obeyed a higher callling to use her talent for His glory.Understanding the work involved, I could never express my appreciation enough.
Megan is an amazing woman and mother. Her son is a liver cancer survivor and you can learn more about
Tanner and family go to carepages.com and TannerNielsen is the carepage name.

I'm just so touched and it really helped my weekend. It has almost inspired me that I can finish it with my other pictures. My mom has done a great job keeping up with all the updates and other things with both boys. She is so organized and so great about knowing what to keep. I have all the precious things, it's just finding a way to organize. Because this book is so beautiful, I'm so proud to be able to put it on our foyer table for all to see.

Well, as you can imagine my house is one big mess. All the kitchen cabinent contents are just everywhere else around here. Our precious preacher came by yesterday to check on us and got a big welcome with our big mess. It's all good, but what a great time to clean out!! Dale keeps asing if we really need all this stuff.??

I found this quote on Emma Grace's page that I wanted to copy:
"Life is short, Sometimes you gotta bend the rules, Forgive quickly, Kiss slowly, Love truly, Laugh uncontrollably. And never regret anything or forget someone who makes you smile.
Life may not always be the fun party we hoped for, but while we're here we should dance."

Thanks too for all of you who didnt lose total respect for us after reading about last week's party held here. You all said it best, Riley will never forget her 13th birthday! (13.5 actually)

Thanks again for all your friendships,
Carol

I have gotten so many inquiries in the past about music I have played on here, but it gets tricky to get it on. I thought I would share some of my favorites so whenever you want to hear some great music while surfing the net, you can minimize the playlist! I hope to change it around when I figure it all out. You can also turn it on and off at your will (I think). This is my tester.

Tuesday, September 18, 2007 7:25 AM CDT

We’ve had so much going on this past week, I don’t even know where to start or which thing to tell you about.

Of course, this coming week is extremely difficult. I can’t even begin to believe that it has been a year since I’ve held my precious baby boy in my arms. It’s still so fresh, so raw and so very painful. I continue to deal with my disappointment and sadness everyday. I came back with from the conference feeling so much better and some what renewed about my place in the healing process. You know how every time that happens, there are going to be so many things that come up that try and “test” your new commitment and Satan has really tried many ways to bring me way back down. It’s a constant battle.

Since the upcoming week and weekend are just too difficult to even think about, I decided to share something that I think will cause you all to about pass out. It involves a party we had this weekend. Many of you will remember that back in January, we wanted to do something special for Riley’s 13th, but she couldn’t decided so we decided to just wait until it’s warm. Well, Riley and her friend Jamie decided they wanted to have a combination party this year (that seems to be a trend). It was brought to our attention, that outside of family and maybe a friend or two spending the night, Riley had only had 2 parties, one when she was 2 and another when she turned 10 (that was very late because I went into labor with Reese on her scheduled day).

Riley and Jamie very much desired to have a one of kind, never done before, over the top party (is MTV’s Sweet Sixteen coming to mind?) Imagine our shock with the girls took us out to eat to have a “power point presentation of what they wanted their party to include. They wanted to have it at our house (big backyard) and mostly it was going to be a regular outdoor, playing around party. However, it was going to end with everyone in the back yard participating in a huge food fight. (ok, my mom is nowoffcially passing out because I hadnt had the nerve to tell her) My immediate reaction was oh my goodness!!! No way,!! Even if you could convince me, your dad and the other parents will NEVER go for it. They got further in depth and even did a video presentation for Dale to further get his consent. They had all the details worked out, big tarp, lots of chaperones, safe foods, rules etc.
To make a very long story as short as possible, somehow they convinced us. One plug they had is that to make it more “ok” they would ask each child to bring a can food item for the local food pantry (ok, that angle did help). I guess we are all capable of temporary complete lack of judgment when our kids are involved.

I guess Dale and I secretly felt like, well, you only live once, and trying to live by our “live to the fullest attitude” and thoughts of who hasn’t dreamed of participating in a big ole food fight took over. We also figured food fighting might be better than slow dancing, spin the bottle and all those other crazy options at teen-age parties. I’m still not sure how or why we agreed, but somehow it came to be.

I have to say that for the most party I think the kids were great and had a fun time. No one got hurt. A big plus. They followed the rules we set up as well. There were a few that were very bad apples that we didn’t find out about until later, but I decide to try and not let a few bad apples spoil the bunch!! (Middle school boys must have a complete lobotomy during these years!) All the girls were great and most of the boys were precious, but there were those ones that just need to be sent away in shackles for a few years!
The actual food fight was fun, but when it was over….GROSS!!. We planned on hosing everybody off. Wouldn’t you know the one night this summer that the night time high was in the 60’s. It got very cold!! Especially when you are covered in pudding! The good news for all you teachers out there, I don’t think they will ever want to do it again. As one girl told me when I was trying to help her clean off, “next time I heard the words food fight, I’m running the opposite direction” After 2 showers, Riley still had pudding in her ear the next day.

So, we definitely can say we lived in the moment this weekend. I think our coolness notch went way up with the kids, but I imagine we are down at the bottom with the parents. We probably had somewhere between 55-65 8th graders here …these parents let them come so we can’t be the only crazy ones. They collected close to 100 items for the food pantry and we hope to let them deliver it themselves soon.

So, I guess the pictures are the best way to say it all. Oh, you maybe wondering where Reese was during the food fight..happily, asleep on the couch!!

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our backyard “before”


My sister in law getting ready to help

Dale’s job “after”

Reese and Mollie during all the action



I’ll update more soon. I would love to put a slide show together for my precious Randon, but just not sure I can do it right now. I sure wish I had that precious soul on video. I can’t describe enough how I ache for him. Thanks in advance for continuing to remember us.

Wednesday, September 12, 2007 12:04 AM CDT

Deeper Still conference

Me with precious Jordan’s mom Susan and Angel Shae’s mom, Dawn-my faithful caringbridge friends I finally got to meet!



I know this will be an extremely long update, so I will try and save some for later. I’m not sure where to start, so much is going on and so much has happened. First of all, it’s September 11, and it would be completely unnatural not to mention that. I woke up this morning like most of you remembering where I was and what I was doing when I heard the news. The most vivid memory for me is that I was pregnant with my third child, Reid. My dad was in New York City and we spent most of the morning on pins and needles until he was able to get through on his phone to let us know he was ok. It some ways, it seems like that was the beginning of when things in our comfortable perfect world took a drastic change. It was the beginning of many disappointments, struggles and the blatant realization of the brevity of life.

The above pictures are from my trip this weekend to the Beth Moore conference. I don’t even know where to begin to tell you all about that. I was very nervous about this trip. As a mentioned earlier, my caringbridge friend Susan emailed me asking how far I was from Nashville. I had heard Susan speak of Habitat for Hope and what a great ministry it is, but I honestly hadn’t taken the time to really learn more about it. Let me tell you, it is a wonderful ministry. You can visit habitatforhope.org for more info but to briefly summarize, it came about after the Horrock family was introduced into the world of childhood cancer, separation, and hospitalization with their daughter Bella who is now a survivor of a very rare childhood melonama. To me, it’s a family who meets the call of taking a big lemon in their lives and having the boldness and determination to turn it into something good. A ministry of hope to those dealing with the indescribable world of a sick child.
So, habitat had a group going to the Deeper still conference, a conference which was very sold out. When Susan realized I was so close, she insisted that I be included and in God’s perfect plan, somehow a ticket was found for me. It was a group from St. Jude. So, not having ever spoken or met a single person in the group other than email, I was nervous. I’m not much of the adventurer like that to just take off on my own. But, part of me knew that this was a group I would feel right at home with. In the above group picture, 6 of us have buried a child and 3 have a child with cancer. There is also a St. Jude nurse (imagine what she has seen) and a Habitat for Hope volunteer. (I think I have my numbers right). I was worried about things like what if they are different than I imagine or what if they don’t like me (my typical insecurity battle). But, I feel there is this instant bond and the instant realization that we were among people who really get it. To me, it was an instant bond.
So here we sit in this conference. All of us hurting and struggling. We stayed up until at least 1 am the first night confessing our faith struggles, our broken hearts and just the hurt but also the hope of seeing our babies again. Tonya shared that she had needed and desired a miracle to just know God’s presence. She shared a story of getting that recently and I’m wishing for a miracle too…I'm wanting a burning bush or some manna from heaven. I want to be able to say that I don't need a miracle to believe, but right now I'm struggling.
So Saturday morning we are all together in the sold out Sommet center awaiting to hear from Beth Moore and wondering what she would talk about it. With Beth, it doesn’t really matter, because she can make any topic deep, stimulating and amazing. But guess what, here is what she spoke about (Mylissa summarized it best) ….‘getting over your devastation with God’. She was preaching on 2 Samuel 7, and using the life of David to illuminate that his worship was preceded by anger and fear towards God, but once he released it, he was able to truly worship and reside in His presence again. As illustrations for her sermon, she mention some emails she had gotten from those who were going to attend, including a mom that had lost her child to cancer, and a little friend of hers who is a child with Down Syndrome AND is also battling Leukemia. I knew that I would come away getting something out whatever she talked about, but I didn’t literally expect that it would be as if she had planned it all with only me (and my great group) in mind. I think all of you who have faithfully followed me know that I have been completely devastated. I cant think of a better word to describe me right now than DEVASTATED. She said it words what I absolutely feel but have been too afraid or scared to admit…I am afraid to trust God again…I can not look past the devastation and feel as though I can truly trust God. It consumes me and stands in the way of renewing my relationship and taking my joy out of life.

I have so far to go in realeasing it, but just being there and being with this group and praying and crying with them was so healing for me. I can share more about it later. I’ve said for a long time that I know there is something more that God has planned for us but I’m not sure what it is. I'm learning a lot more. Right now, I realize that I’ve got to stop looking for that big thing because I’m completely overwhelmed. Maybe I'm not suppose to jump into some big thing. I’ve got to start listening and realizing that it may involve something that is so beyond what we thought we were willing or able to do. Little things are happening that make me see some bigger pictures. In the meantime, I’ve got to work on the relationship and my sense of being completely overwhelmed before I can truly decipher what it is he is might be calling us to do. I've learned that just because something is good or seems right, doesn't necesarily mean that is what I've been called to do. Perhaps he has something more in store for all of us, perhaps it's something right before us that seems so small.

Dale did great while I was gone but I came home to more sad news. Our precious friend Dan had taken a turn for the worse in his cancer battle and was not to make it through the night. The past 3 y ears, Dan has reached out to me before I ever even knew him. He and his wife and precious daughter’s have faithfully helped us in a big way with the lemonade stands. I’ll never forget my second Sunday back to church after Randon died, so many adults in that church couldn’t even look me in the eye, but sweet little bold Kelsey came right up to me and gave me a hug and said “We pray for you every night!” This was way before they knew the battle ahead of them. Dan only lived 59 days after his diagnosis. They have always been a special family to me and I’m so sad that those sweet girls do not have their daddy here now. Please pray for me to be a good friend to them and someone who is there for them like they have been for us.

Well, I have an extremely busy day and must get going. I hope to share more soon about our lives as we continue to find healing and God’s strength to face everyday.

Much love,hope and courage,
Carol

Also, September is Childhood Cancer Awareness month. Someone shared this video link with me and I wanted to pass it on. I love the song.

Wednesday, September 12, 2007 12:03 AM CDT

Tuesday, September 11, 2007 8:17 AM CDT

Deeper Still conference

Me with precious Jordan’s mom Susan and Angel Shae’s mom, Dawn-my faithful caringbridge friends I finally got to meet!


I know this will be an extremely long update, so I will try and save some for later. I’m not sure where to start, so much is going on and so much has happened. First of all, it’s September 11, and it would be completely unnatural not to mention that. I woke up this morning like most of you remembering where I was and what I was doing when I heard the news. The most vivid memory for me is that I was pregnant with my third child, Reid. My dad was in New York City and we spent most of the morning on pins and needles until he was able to get through on his phone to let us know he was ok. It some ways, it seems like that was the beginning of when things in our comfortable perfect world took a drastic change. It was the beginning of many disappointments, struggles and the blatant realization of the brevity of life.

The above pictures are from my trip this weekend to the Beth Moore conference. I don’t even know where to begin to tell you all about that. I was very nervous about this trip. As a mentioned earlier, my caringbridge friend Susan emailed me asking how far I was from Nashville. I had heard Susan speak of Habitat for Hope and what a great ministry it is, but I honestly hadn’t taken the time to really learn more about it. Let me tell you, it is a wonderful ministry. You can visit habitatforhope.org for more info but to briefly summarize, it came about after the Horrock family was introduced into the world of childhood cancer, separation, and hospitalization with their daughter Bella who is now a survivor of a very rare childhood melonama. To me, it’s a family who meets the call of taking a big lemon in their lives and having the boldness and determination to turn it into something good. A ministry of hope to those dealing with the indescribable world of a sick child.
So, habitat had a group going to the Deeper still conference, a conference which was very sold out. When Susan realized I was so close, she insisted that I be included and in God’s perfect plan, somehow a ticket was found for me. It was a group from St. Jude. So, not having ever spoken or met a single person in the group other than email, I was nervous. I’m not much of the adventurer like that to just take off on my own. But, part of me knew that this was a group I would feel right at home with. In the above group picture, 6 of us have buried a child and 3 have a childhood cancer survivor. There is also a St. Jude nurse (imagine what she has seen) and a Habitat for Hope volunteer. (I think I have my numbers right). I was worried about things like what if they are different than I imagine or what if they don’t like me (my typical insecurity battle). But, I feel there is this instant bond and the instant realization that we were among people who really get it. To me, it was an instant bond.
So here we sit in this conference. All of us hurting and struggling. We stayed up until at least 1 am the first night confessing our faith struggles, our broken hearts and just the hurt but also the hope of seeing our babies again. Tonya shared that she had needed and desired a miracle to just know God’s presence. She shared a story of getting that recently and I’m wishing for a miracle too…I ‘m wanting a burning bush or some manna from heave.
So Saturday morning we are all together in the sold out Sommet center awaiting to hear from Beth Moore and wondering what she would talk about it. With Beth, it doesn’t really matter, because she can make any topic deep, stimulating and amazing. But guess what, here is what she spoke about….‘getting over your devastation with God’. She was preaching on 2 Samuel 7, and using the life of David to illuminate that his worship was preceded by anger and fear towards God, but once he released it, he was able to truly worship and reside in His presence again. As illustrations for her sermon, she chose to profile a mom that had lost her child to cancer, and a little friend of hers who is a child with Down Syndrome AND is also battling Leukemia. I knew that I would come away getting something out whatever she talked about, but I didn’t literally expect that it would be as if she had planned it all with only me (and my great group) in mind. I think all of you who have faithfully followed me know that I have been completely devastated. I cant think of a better word to describe me right now than DEVASTATED. She said it words what I absolutely feel but have been too afraid or scared to admit…I am afraid to trust God again…I can not look past the devastation and feel as though I can truly trust God. It consumes me and stands in the way or renewing my relationship and taking my joy out of life.

I have so far to go in realeasing it, but just being there and being with this group and praying and crying with them was so healing for me. I can share more about it later. I’ve said for a long time that I know there is something more that God has planned for us but I’m not sure what it is. I learned a lot more. Right now, I realize that I’ve got to stop looking for that big thing because I’m completely overwhelmed. I’ve got to start listening and realize that it may involve something that is so beyond what we thought we were willing or able to do. Little things are happening that make me see some bigger pictures. In the meantime, I’ve got to work on the relationship and my sense of being completely overwhelmed before I can truly decipher what it is he is calling our ENTIRE famil to do.

I came home to more sad news. Our precious friend Dan had taken a turn for the worse in his cancer battle and was not to make it through the night. The past 3 y ears, Dan has reached out to me before I ever even knew him. He and his wife and precious daughter’s have faithfully helped us in a big way with the lemonade stands. I’ll never forget my second Sunday back to church after Randon died, so many adults in that church couldn’t even look me in the eye, but sweet little bold Kelsey came right up to me and gave me a hug and said “We pray for you every night!” This was way before they knew the battle ahead of them. Dan only lived 59 days after his diagnosis. They have always been a special family to me and I’m so sad that those sweet girls do not have their daddy here now. Please pray for to be a good friend to them and someone who is there for them like they have been for us.

Well, I have an extremely busy day and must get going. I hope to share more soon about our lives as we continue to find healing and God’s strength to face everyday.

Much love,hope and courage,
Carol

Also, September is Childhood Cancer Awareness month. Someone shared this video link with me and I wanted to pass it on.

Wednesday, September 5, 2007 11:01 AM CDT

Well, either you all are really good and keeping quiet and Riley just hasn't really cared that I've shown the world her crazy side...at least she wasnt in her pajama's or anything.
We've shown it to so many people who've come over in front of her and laughed so hard that maybe she will soften on it a little. She did tell me I could send it in to Amercian's funniest home video. But I continue to appreciate your help in saving my life and keeping it quiet. I'm very glad most of you found it has funny as we did. To top it off, Reagan used her allowance/job money (2 weeks worth) to buy a Hannah Montana wig. It was not an easy task to even find one, but I think it has been worth every penny. We had to drive all over Nashville last Saturday to find it! (Riley secretly likes it too). I will have to share some pics soon.

We are just so busy. Not sure why, but just seems the norm for all of us. Between the three of them (did I mention Reese is playing U4 soccer..it's as hilrious as it sounds), we have soccer everyday and by the time you come home and eat and bathe and homework...it starts all over again! We did have a nice labor day weekend. Got some things done around here..it's amazing how some fresh new paint can do wonders for a room. I'm excited to have gotten some of that done but several rooms to go. The kitchen project is slow. Don't worry, I have taken before pictures and can't wait to take after.....if it ever happens!! Nobody gets in a hurry!

Riley is working on her room. We painted in Lime green..actually the exact color is 'lettuce leaf'...and that is exactly what it looks like! I decide it's her room and you are only a teenager once. When you get to the top of the stairs, her bedroom door "glows."

It's a short week. I'm very excited about the weekend. I am going down to Nashville for a Beth Moore conference. Way back one of my friends asked me about going and September seemed so far away that I had to pass. As it got closer I was wishing I had agreed to go, but tickets were gone by that time. However, thanks to my caringbridge friends I have been included in a very exciting weekend. Even though I feel like I know some of them very well, we have never met in person! Wow, this is going to be neat. I'll be with Jordan's mom, Susan, who has been an extremely faithful friend to me through post Reid, through Randon and continues to be such a support. I'm also going to get to meet angel Shae's mom, Dawn, who I also feel like I've known forever and some other angel mothers who are coming over for this. I don't think it could come at a better time or month for me than to get together with some dear mothers who walk the same grieving road as I do. I know it will be a very speciall time. Please pray for the safety of all of us. I RARELY leave my family, not even for a weekend, so this is always doubly hard for me.
Dale will keep the fort down here. He has been very gracious about me going. As most of you know, he is a work aholic..not really by choice. I always appreciate his work ethic and how he provides for our family but I know it's taking a toll on him and he really looks forward to the weekends when we can all be together. I appreciate him willingly sacrificing one. He has 4 soccer games to manage without me, but I know he can do it!

Well, perhaps I'll have more to share later. Think I'll sneak the video on here one more week! I hope things are going well for all of you and you are finding precious moments in everday!

love, hope and courage
Carol









Hanna Montana girls from carol and Vimeo.

Monday, August 27, 2007 12:28 AM CDT

We've had another crazy busy week and weekend. LIfe is good right now. Of course I continue to struggle everyday and I know too well that it's just a choice I make daily. I really don't like it when people tell me that I seem to be "doing better." What they don't understand is that I get better at carrying on but the pain, the heartache and the loss still feel exactly the same. You never get over it and I'm not yet over what we may have to face ahead of us. But each day I try to smile and continue to to find a way to have a life that can be counted as good. So, please don't ever think I'm over it or that I'm ok now.

I know I've put some sad songs and videos on here before so I wanted to share something really funny today. Of course you all probably wont find this as hilarious as I did. The girls' computer is upstairs on the end of the house in the guest room. I dont let them get on the internet when I'm not up there since it's so far away, but they have free unlimited access to their new ivideo. Let me tell you, they spend plenty of time on it. I have no idea when they did this. They were all at school one day and I came up on the computer and while looking thru videos I found this!!!!!

I apologize that it it a little long, but you've got to watch closely to the middle part to see what is so funny about it to me. I love the fact that Riley is not too cool to admit that she loves Hannah Montana. She also is so reserved and shy, but when she gets comfortable, she is wild and crazy and you may not always see that side of her. She becomes a big camera hog...if you will notice her wanting to take over here and the expressions and frustration on Reagan's face...it's too funny to me. This is a hanna montana song, normally I would be right in the middle with them, but I of course would never let it be caught on camera!! It was just hilarious not to know they had done this and just watch it while looking thru their videos (I am one of those moms who vigilantly check the computers and know what is going on). They love to dance and be crazy~!

For those of you who see me out or know Riley...don't tell her this is on here, she is going to be so mad......but I thought you all deserved a little humor in your day!!! Listen closely to the sound effects....the funny part is in the middle, the rest is a little too long!

HOpe you find it as amusing as Dale and I did!!! We are still laughting about it. YEs, that is little Reese in the front, trying to keep up with the big girls



Hanna Montana girls from carol and Vimeo.


more later! love, hope and courage

Friday, August 17, 2007 9:17 PM CDT

Here is the video that Riley Carol Miller made for her grandfather, Kenneth Riley Speakman on his birthday (see where the name came from) Since she made it, it's pretty much pictures of her and him. She went through and did this completely herself, so not bad for a first try.
This is completely her work. The sound quality is terrible after uploading, I'm not sure why as it sounds perfect on the original. I know nothing about this Macintosh and how to upload videos. If anyone has any pointers, please share.



Untitled from carol and Vimeo.

Reagan is going to work on one for her friend Abbye who is moving!





It's Friday, August 17th. I know what this has meant to most of you.....yes, the big day....Has you house been as excited as mine.....

The premier of High School Musical 2!! It's been very anticiapted around here. However, the girls had more important things to do here first. It is my precious dad's birthday and it's a big one for him. He has had a tough road this past year, but we were thrilled to put the High School musical debut on hold and celebrate this special day!! It's very precious to us. I cooked his favorite meal in what might be my last big cooking before my kitchen becomes incapiciated for a while!

We had a great time looking at old photos and being amazed at how time flys! Not to fear, I'm sure High School musical will come on no less than 100 times this weekend, so they still made it over to some friends house for the Big High School Musical Party later. So, the big girls are gone, Reese is sound asleep, the kitchen is clean (my mom was here, remember) and Dale and I have the entire house to ourselves.....no Disney Channel on and complete control of the remote. Who knows what we may get into.

We've had a hectic but good week. There is a lot going on around here, but no complaints as all the craziness is self-induced!! There seems to be so much happening and no time to slow down and take it all in . Our dear friends and neighbors our moving. We are very happy that they will be off closer to family and new adventures, but we are sure going to miss them. This is Reagan's best friend and the first time she has had to deal with a close friend moving. We were such good neighbors in our old neighborhood that they followed us here about 4 years ago to be our neighbors again. We will miss all of you so much..we miss you already! Thanks for your friendship through the years and your faithfulness through all the hard times. You definietly are the type of friends that are rare and true treasures! We wish you all the best in your new town and home! Thank goodness for email!!!

Have I mentioned how wonderful my kids are? I'm just a little crazy about them. I"ve just been convicted again this week, to put the things aside and really enjoy them, there just aren't enough hours in the day. I'd rather have more time to make memories than worrying if they are the best soccer players out there or the smartest kid in the class. I learned a long time ago, no matter how smart your kids are or how good at something they are, there is alway somebody who comes along that is better. Treasure them for who they are and for who they are inside, and not for the things they can do. To me, mine will always be the greatest in the world, and that is all that really matters.

I should go and treasure this time with Dale. I wish you all a fantastic weekend. Riley has been working on something for my dad. I can't wait to share it with you. In the meantime, I'll share the song that seems to play in my head often as I think about my love for my husband, children, parents, siblings and nieces on my dad's special day. Remember when I was out
Vandy and had the personal Rascall Flatt concert...they are just old buddies of mine.






Love, hope and courage
Carol

Friday, August 17, 2007 9:17 PM CDT

It's Friday, August 17th. I know what this has meant to most of you.....yes, the big day....Has you house been as excited as mine.....

The premier of High School Musical 2!! It's been very anticiapted around here. However, the girls had more important things to do here first. It is my precious dad's birthday and it's a big one for him. He has had a tough road this past year, but we were thrilled to put the High School musical debut on hold and celebrate this special day!! It's very precious to us. I cooked his favorite meal in what might be my last big cooking before my kitchen becomes incapiciated for a while!

We had a great time looking at old photos and being amazed at how time flys! Not to fear, I'm sure High School musical will come on no less than 100 times this weekend, so they still made it over to some friends house for the Big High School Musical Party later. So, the big girls are gone, Reese is sound asleep, the kitchen is clean (my mom was here, remember) and Dale and I have the entire house to ourselves.....no Disney Channel on and complete control of the remote. Who knows what we may get into.

We've had a hectic but good week. There is a lot going on around here, but no complaints as all the craziness is self-induced!! There seems to be so much happening and no time to slow down and take it all in . Our dear friends and neighbors our moving. We are very happy that they will be off closer to family and new adventures, but we are sure going to miss them. This is Reagan's best friend and the first time she has had to deal with a close friend moving. We were such good neighbors in our old neighborhood that they followed us here about 4 years ago to be our neighbors again. We will miss all of you so much..we miss you already! Thanks for your friendship through the years and your faithfulness through all the hard times. You definietly are the type of friends that are rare and true treasures! We wish you all the best in your new town and home! Thank goodness for email!!!

Have I mentioned how wonderful my kids are? I'm just a little crazy about them. I"ve just been convicted again this week, to put the things aside and really enjoy them, there just aren't enough hours in the day. I'd rather have more time to make memories than worrying if they are the best soccer players out there or the smartest kid in the class. I learned a long time ago, no matter how smart your kids are or how good at something they are, there is alway somebody who comes along that is better. Treasure them for who they are and for who they are inside, and not for the things they can do. To me, mine will always be the greatest in the world, and that is all that really matters.

I should go and treasure this time with Dale. I wish you all a fantastic weekend. Riley has been working on something for my dad. I can't wait to share it with you. In the meantime, I'll share the song that seems to play in my head often as I think about my love for my husband, children, parents, siblings and nieces on my dad's special day. Remember when I was out
Vandy and had the personal Rascall Flatt concert...they are just old buddies of mine.

Love, hope and courage
Carol

Friday, August 10, 2007 7:21 AM CDT

Here is my inspirational video of the week I thought I would share. This song continues to be very special to me. Some days, I feel more held than others. I hope we all have that feeling of not just being held,but being "nestled." (note to my friend Robin: watch at work at your own descretion)




I've gotten everyone but Reese off to work and school here. It seems it gets earlier everyday. This was our first full week of just getting back into a routine. It hasn't been too bad, but that hecticness is already there. Soccer practice has been cancelled a lot this week for the heat, so that has slowed things down a little.

I'm finding ways to keep myself busy. Right now I guess it's the kitchen remodel. I can't wait to get it done but it's really not fun. I just want someone to come do it and when I get home, just walk into this beautiful new kitchen. All these decisions and choices in the mean time wears on me a little. Sometimes it seems like such a petty thing to be pouring myself into, but I'm trying to convince myself that I deserve a little fun. It does seem the kitchen is where I spend most of my time so want it to be a room I enjoy. We've been wanting to do this for 4 years!It's a long way off as we are still just in the getting estimates and choosing designs stage. My dear decorator friend and I are taking a trip up the road today to look at some countertops.

There is nothing else really new going on here. The start of school and end of summer are always a little difficult. I have to take big swallows as I go into school and preschool and see all the boys and kids where Reid and Randon should be. I know that will get easier with time, but I realize I'll always be aware of where my boys should be. It's hard to describe the pain and those little holes in my heart.

I have found a small group Bible study that I'm really enjoying. For me, it's a process of easing back very gently. I have known that I need to be a part of some type of Bible study but for those of you who been through some difficult trials and circumstances, I think you could relate on how hard it can be to find a group where you feel comfortable and that can meet your needs without having to feel so different or so needy. It's hard to explain. I think this group is a perfect fit for me. I'm not the only one who has or is enduring some extremely difficult days. It's empowering to be a part of such a group who notices when you are not there or who understands that you're going through some dark times and to give you the space or the "permsission" to struggle.

In the study this week, it was asked if you would rather be known as a kind person or a good person. Without kindness, goodness is self-righteous. Without goodness, the kindness is just like an act or just a habit. To truly be living the way we should, we need both. I continue to believe and it was brough out in our study this week that "spending yourself" is the only way in life to feel satisfied, your body strengthened and your light to rise in the darkness. I got to witness a dear friend of mine spend herself on somebody this week. She did something so very neat and special for someone. It was a perfect act that someone really needed. I asked my friend what made her realize she needed to do this for this person. She told me that it wasnt her, she had never had the idea...but that literally out of the blue, God really spoke to her to do this. I wish I could explain the event, but to cherish some privacy I can't. But I share this to say that when I witness people doing things like this, really being motivated by what God is telling them to do and not for show, to take that leap to really "spend" themselves, it strengthens my faith and renews my hope so much!

So, we should all go out this week and find ways to "spend ourselves" on others. We will be the ones to reap the benefit!

I hope you have all had a good week (thanks for noticing Debbie) and have an even better weekend!

love,hope and courage
Carol

Wednesday, August 1, 2007 7:42 AM CDT

It's sort of the last day of freedom so to speak around here. School starts bright and early tomorrow. I can not believe it and have no idea where the summer has gone.

However, it's here, so we just have to get happy about it. They are both happy about their teachers. Riley isn't suppose to know until the first day of school, but evidently one kid figured out yesterday that if you went online like you are going to check your grades, your schedule and teachers are on there! Word spread very fast to get online and check your schedule. So all the ones that remember their passwords have seen their schedules!! She was absolutley thrilled getting the "family" she really wanted, so that makes things start out on a good foot already.

It's very bittersweet as I realize that Reid would be going to kindergarten this year. It's puts it all in perspective for me. I'm sure I'll cry when it's time for Reese, but I'll also be so glad that she is here and growing and reaching those monumental milestones. So if you are losing one to kindgergarten, be so thankful. I sure wish that I could send one off this year. I know that doesn't take away the sadness of the days at home being over and a life full of school ahead of them. It is so hard to watch them reach that time. It's never really easy for me to send them back to school any year, but I'm thankful to have three who are learning, growing and able. Reese will go back to preschool next week.

Best wishes to all of you who are about to start a new school year. I am looking a little forward to getting back on somewhat of a schedule. Wishing all of you some wonderful memories and friendships to be developed this year.

I'm going to let them sleep in for the last time a little today and then we've got to squeeze in the last hours of fun! Not sure what all we will do.

Christmas also came a little early this week. The girls have really been wanting an imac computer. I've never had any interest or known much about them but after hearing them rave about how fun they are and with all the PC problems I've been having lately I started researching it a bit and realized how neat those things are!! Well, our Gateway completely crashed again and the girls have a relatively new Dell, but it's been upstairs and we really need 2 computers during school. Well, Santa (you know who you are) appeared with the girls an imac this week and I was thrilled to inherit their Dell. So now we are all hooked back up and online.We have had more fun with the imac. The video and pictures are so neat. The big girls both had new school "makeovers" yesterday. As soon as I figure out how to transfer and share from the imac, I will share their pictures.

I should get ready for the day. I have a lot of projects I'm taking on around here (including a kitchen remodel) and I'm actually looking forward to all that is ahead! I should have plenty to keep me busy when it's a little lonlier around here. I'm really trying to go into this new school year with much hope and happiness. I am so blessed to have two amazing students. I don't think I've ever known a child that loves life and lives to the fullest like Reagan. Every year I pray that the teachers, adults and friends in her life will never quench her spirit (and Riley's too!)
She didnt get a lot of her close friends in her class and I took it much harder than she did. She commented that she was excited about one particular girl in her class. I had never heard of this girl before and asked why she was excited about being in class with her. She told me that she heard that this little girl didnt believe in God and she was going to be able to tell her all about Him. Now I've got to really pray Reagan doesnt stir up any trouble with the ACLU! There is no stopping that girl!

Thanks for all your encouragement, emails and notes last week. Some weeks are just harder than others and that was definitely one of them. With all the computer swapping, I haven't responded to some emails like I should have, but please know I always read every email and note on the guestbook and continue to appreciate the friendships and support in my life. I don't know where I would be without you!





Riley and one of her main BFF's (Yes, I'm hip on the lingo) on the first day of school

Wednesday, July 25, 2007 11:59 AM CDT

I learned this week that a friend of ours indeed has cancer, stage IV. He's a wonderful father with 2 young children and a caring wife. They are a beautiful family with so much ahead of them. Every year the have been faithful to us in our effort to raise money for pediatric cancer research, and now he faces his own difficult journey with cancer.
Our church had a special time of prayer for him on Saturday night and the entire family has constantly been on my mind since then.
This has forced me to have to deal with some of my issues on prayer this week. I have prayed for him often, but often with a unbeliving heart that I wish would go away. It's very clear to me that prayer is necessary, required and instructed to us as Christians. But I'm not convinced or even sure about healing (I can see the emails coming). I know, just because my boys didn't receive a healing on earth doesn't mean other's wont. I know all the cliches about getting their heavenly healilngs. However, especially with Reid, he was prayed for more than any baby I could imagine. He was annoitend with oil by elders, I had friends that fasted, I went to the chapel every night in Philadelphia after he would fall asleep, he was probably on every prayer list in the country, even in other countries. The women of my church held special prayer times just for him. Thre was a Mom's in touch group that was so faithful to pray for him. He came so close, I thought we were getting our earthly healing, yet, he was taken so quickly.

I know those of you who have been there know that it's so hard, to get up and dust off the dirt and pray, pray believing again. I believe that God has the power to do anything, but I'm not convinced what is allowed here on earth. We don't pray anymore for people to be risen from the dead, although Jesus is capable. Why do we limit God at death now? Have we ever actually prayed for an amputee's leg to grow back...has that ever actually happened? Has a child with Down syndrome every completely been cured from it? I'm not eluding that we should limit God, because I firmly believe that we have to know He is able. But I'm not sure how a feel about the whole picture, the whole package. Often, I get reports of praise of miraculous healing that God has blessed someone with. I'm still trying to figure out how to take it. I have a hard time believing the God I know would choose to heal some and not others. Even atheist get healings and healthy children. There is power in prayer, but I'm not sure what is allowed here today.
So, the biggest step for me, has been to just admit that I struggle with it. I am human and as much as I would like to, I dont see through His eyes. The best thing for me to do right now, is to admit that I do not know, I definitely do not have all the answers. I have seen the power of prayer, I see it everyday in my own family, yet I also see the heartache of prayers that seem unanswered. I try to be very cautious in speaking about what I hear God telling me to do or not to do. Perhaps God has been blamed falsely for a lot of things he didn't say.
I think part of the reason I was so shocked with Randon, is that I really felt God telling me that this suprise baby was a gift, a son He wanted me to have. I felt him giving me a peace that we would bring this baby home and get to borrow for a long while. Obviously, that is not what God said to me. But I'm not ready to quit listening all together.
In the meantime, I will continue to pray. I will continue to try and learn more about it but I will never be presumptious enough to believe that if I do it just right and hard enough, I will get every desire of my heart.
But most of all, I have to know that prayer should focus more on praying that your heart is able to accept His will rather than His will being able to meet your desires. That is all I can pray for for me right now.

We had a sermon this week at church that seemed as if it was designed exactly with me in mind. In my search of scriptures of comfort, I had not really thought to turn to the story of Naomi and Ruth. It is one of great loss and great faithfulness. In just 3 verses, Naomi loses her husband and then both of her children. I learned how she even wanted to change her name from Naomi, to Mara, which means bitter. She was a woman grieving, who comments that she went out full and the Lord brought her home empty. I know there are so many of us who are, or who have, felt that emptiness. She wasnt empty just as I'm no where near empty, but I know what it's like to feel that way.

At the end of the sermon our pastor spent a little time talking about encouragement and what to do with those grieving. He shareed how encouragement means that you stand by them and give them some of your courage. Someday they might be there for you when you need some of their courage (and you are going to need it someday). This is where I felt like I could stand up and do some preaching myself. Sharing one anothers burdens can be so lacking..I think more so from the church because we expect so much from the church. Ruth is an amazing example of a faithful friend. She had every reason to leave Naomi and she would not have been wrong in doing so. If I had been her, I would have wanted to move on and find me another husband and start a family. I can't imagine being that faithful to a mother in law. But, she was.
I too have had many faithful friends, which includes those of you who take the time to read this and check on us.

One huge regret that I have with both boys is that I did not do any video or take more pictures of things. I thought it would be too painful to go back and watch if they didnt make it. And now I would do anything to have more pictures, more moments captured. I can't dwell on it and I'm thankful for the pictures that I do have, but I wish I could go back and see Reid's first smile and the day he learned to sit up. I wish the girls could have had that for later. I know there are some that think they were just babies, it should be easy to get over, but I think they would feel differently if you could see them in action. Sometimes people try and make you feel better with words. Words can't help. So if someone is hurting, just come, leave the words behind. Bring your gift of presence, your arms that can hug, your hands that can bring chocolate, your eyes that can cry with them.

I want to share this video. It's the celebration service of Eliot Mooney who lived 99 days and was born the day after Randon, the baby from the 99 balloons video I shared earlier. When I saw it it reminded me so much of Randon's service, we just didnt do the balloon release. It was a beautiful fall day and we were surrounded by dear friends, families and even those we had never met. I have struggled sometimes, even though we were so surrounded, about why some of my friends and some of the girl's friends who were in town didn't come and still have never really offered any encouragement or acknowledged our loss, but I realize that we were given overwhelming support and those who weren't there missed the blessing. Those of you who have known me for awhile, know I love the song that is playing.
So, if you werent able to be there, here is a little of what Randon's was like too. Now, you can remember 2 special angels
Eliot's celebration



Keep praying!
love, hope and courage,
Carol

Tuesday, July 17, 2007 10:16 PM CDT

I can't possible begin to believe that it has been a year since Randon's birth, yet it does feel like an eternity since I held him and kissed his face.

Even though I should have plenty of experience by now, I never really know what feels right to do or share on the days of the boy's birthdays and heavenly birthdays. With Reid, his birth was a very joyous ocassion. We thought we had once again been blessed with a healthy baby and at least on his day I can celebrate and enjoy the memory of his birth. It was the most perfect night and is forever etched in my heart as a precious event. Sadly, it was not so with Randon. His birth
is still crystal clear, yet shoots an arrow through my heart daily. It was shocking, painful, heartbreaking and every other adjective you could think of to describe the afternoon my second angel came into the world. I've decided, that what is best for me, is to not focus on that event or the 8 long, sick months that I carried him. Oh, there were plenty of good moments and I could swear at times that I still feel his kicking and movements within me. I miss him. I miss everything about him and I mourn him along with our hopes and dreams of him. You have this baby that you take to term and hold in your arms, feed, kiss, love...he is suppose to be here.

So much can happen in a year. Wow. It's unbelievable. I've asked myself lately why do I really continue to update this site. Initially, it was the perfect way to keep my dear friends informed who could pray for us in the hard times and celebrate with us every single piece of good news. But 5 years later, I realize that it is completely for me...seems it is often about me! I've never sought any counseling with my losses. Yet, I know that this keyboard of mine has been my psychiartrist's couch. It's definitely been my voice when I've come very short of finding the words to voice the heartaches we've endured.

A year later, I try to look back and evaluate where I am and where I seem to be going. I'm undoubtly not happy with where I am, maybe even with who I am. Since this loss, I've been unable to forgive some who I felt didn't respond to my loss appropriately, I've doubted the existence of a God, or at least the existence of a God that loves me. I've cried almost everyday, I've let jealousy and covetness consume me. I've questioned how any of this could be used for any good. I've allowed people to believe that I'm really a woman of strong faith, while living with my struggles.

I've been brought to the lowest pit in the valley at times. I'm always aware that there have been so many that have suffered much more difficult loss than us. I've always known that I have been blessed with not only a wonderful husband, but a wonderful marriage, a really rare gem amongst todays selection of jewels. I have with me the 3 sweetest, most precious children that are growing into even more beautiful people. I have friends who have loved me unconditionally, Yet, my days are full of so much hurt, so much reliving every conversation I had with doctors, the smell of my boys and the moments before their last breaths. The regrets, the worries, the anger, the shock, and the numbness. It's a constant reminder of the brevity of life.

I heard something so simple this week that was like a kick in the pants to me: 'If you really love and care
for someone, you are going to experience tragedy.' That qualifies most all of us. You will lose someone you love. So if it hasn't already happened, it will.
I really have come to terms that I can not judge my value to God by the tragic events in my life. I know there are some people that really believe that if they love just right and work and pray hard enough, God is going to bless them richly in all parts of life. I read a devotion this week about John the Baptist..You know, John the Baptist
who Christ called the greatest among men and his beloved....take a look at his life and how it ended. I don't remember reading about John's beautiful wife and children, the great job he had, how smart his kids were, all I can bring to mind as I rememeber what I read about John the Baptist, were dark days in prison and oh, don't even want to think about how it all ended for him. Beheaded and served on a platter? This is the man Jesus loved?? How can we know compassion if we don't know suffering?

I'm realizing that I have to let go of wondering where I went wrong in life. Please don't misunderstand, I completely know I'm not at the calibar by any stretch of the imagination to John the Baptist, but it helps me have that confidence that everything that happens to us in life, especially the dark time, is not necessarily a result of what God thinks we should be blessed with. Therefore, I also can't take credit for the blessings in my life.

But I'm still mourning. I'm still grieving the path that was chosen for me, I constantly worry about the future. I have so much guilt to work through as the carrier of this horrible disease. I don't think there is any timetable for this pain.
I wont wake up when morning and just be ok. Our home always feels like there is something missing. The cry
of a baby still breaks my heart and I'm not sure when it will ever not be so painful to even hold a baby in my arms. I have no idea when my heart will no longer be broken and how I learn to really trust and pray again, really pray, and to believe again that it makes a difference. But I made some progress this week. I actually
used my mouth and spoke about some feelings. I confessed some things that I needed to get off my shoulders, although it was only a small beginning.

so, I guess I end this with saying Happy Birthday to Randon. You are and were loved so much. I'm so glad that we had you and I believe that your short life here allowed me to be a very proud mother and to have the hope of you having an eternity. Although I hate the disease that took you, there isn't another baby on this earth I would have traded you for. You were special. It feels so
good to be able to talk about you. You were real, you really happened. You are forever a big part of who I am. There is no avoiding here, no akwardness, no fear to say your name.

Thanks to all of you who have continued to be on the other side of this couch, or keybord, for me.

So, I'm getting ready to endure the first "July 19th" of many to come. I don't believe there is any right or wrong way to do it, but we just get through it......we are not really moving on.... but carrying on.

love, hope and courage
Carol

Tuesday, July 10, 2007 9:37 AM CDT

Reagan is still asleep, Reese is downstairs watching teletubbies and I have just have a few minutes before I have to go pick up Riley from her conditioning class, but I wanted to update with all our events from the weekend.

I'm not exactly sure where to begin to desrcibe our big day on Saturday. What starts as amazing is how so many of our friends and our friend's friends reallys stepped up to make this event so successful.

Knowing how important research is, the alex lemonade foundation is a perfect fit for our family in finding a way to give back. I know we all realize how we get hit up constantly for a lot of causes, most all of which are wonderful. I think that is what we love about the Alex's lemonade foundation..no donation is too small and it's so easy for the kids to actually do most of this themselves and have some real experience in helping others. It was really a great day.

I struggled. I struggled a lot. In my mind, wouldn't this event been so much more exciting if we had had one year old Randon out there as our precious survivor. Wouldnt we then been able to really show how treatments and research are improving and making a difference. Why didnt God see it like me. Why is it better for me trying to help Riley with this event when my heart is still so broken, so hurt, so disappointed. Yet for the sake of my daughter I kept myself together, for my daughter who spent so much time on the phone, emailing and never complaining about the hot, hot sun while being thrilled with each glass of lemonade they got to serve. We had to make her stop that afternoon. The excitement not only she had, but every child I saw, over every dollar, 5 or 20 dollar bill that was handed to them. The looks on their faces of such pride to get yet another donation and get to pour another glass. It was so worth it. The expressions on these kids faces when they realized that there were people that wrote 100, 200, 400 and even a 500 dollar check for a glass of lemonade to help other people. It was priceless.

And while I started the event with heartache and probably some lingering bitterness, I got to see my friends out there, bringing their children and grandchildren helping us with an event they knew was so important. What a blessing when our doorbell rang several times that afternoon with people who had missed the stand but wanted to bring by their donations..and others who are still calling. To experience the excitement with Riley when her friends would call and let us know how much they had raised at their stand. We say that we are doing this to make a difference to help all the others who will someday face the horrible tragedy of cancer, yet really, we were the ones that got so much out of it.

I could never thank everyone enough.. everybody who helped us and everyone who supported the stands in some way. I'm so lucky to live in such a wonderful place and as I always remind myself, I've truly been blessed to have friends and community who are such better friends than I am.

Thanks to all of you. Right now Bowling Green raised 16,800.00 giving out free lemonade for the Alex's Lemonade foundation. We are doing one more this Saturday at Kentucky Trust Bank so I think we will reach 17,000.

I'm so thankful for all the good.

Pictures will be coming soon!

love, hope and courage
carol

Tuesday, July 3, 2007 2:28 PM CDT

HAPPY FOURTH OF JULY!!!!

I honestly cant believe that it is already July. We do not have big plans yet for the 4th. We might go out to the Corvette Museum tonight and see the fireworks, but last year Reese was so afraid that I'm not sure how fun it will be. Dale called this morning from work and is looking forward to all of us going and doing something tonight, so hopefully we will come up with something. We are sort of looking forward to just having a day to be home, it seems we've been on the run so much that staying home sounds really great!

We've just had about one thing on the brain this week...Lemonade. It's been crazy but fun. If you go to christianfamilyradio.com and then click on The Morning Cruise on the left hand side, Rileys radio interview is on there (you can click on Riley's name and the play button). Not sure how much longer it will be on there but it was really sweet and thought some of you might want to listen in.

Don't forget to come out to a stand this Saturday for all of you all who are in town. All the kids and families have worked so hard and they LOVE to have customers!!
We also appreciate all the online donations we've received from so many out of town already. It's been such a blessing and encouragement. Thanks to all of you.
All the locations are on the website which you can see from the link above (firstgiving.com/bowlinggreenlemonade)

Oh, please check out the great plug we got on the Alex's Lemonade home page. If you go to alexslemonade.org you will see something about Bowling Green Grand stand and a link to a great promo for us, please check it out.

Please be careful on the roads!! Hope you all enjoy some time with your family

We plan to share some new pictures soon.

As Riley would say...BTW my email has some major issues. It still is not sending everything even though it's in my sent box and tells me it's been sent. If I have not responded to something, please be assured that I probably did not get the email.
I have opened a new aol account just for back up. Feel free to also email us at fiveRangels@aol.com

I really must run and get Reagan to piano.
Again, happy 4th and know how blessed we are to have you all as friends.

love,
carol

Tuesday, June 26, 2007 8:25 PM CDT

Dale improved significantly over the weekend and not only is back to work but back in Alabama. He got a good report at the doctor on Friday. We did find out through all of this that he was born with just one kidney. You can certainly live fine with just one, but you have to keep the one in good shape. The funny thing is now everytime I ask him to do something around here, or he does something crazy, he just starts saying, " you know I've only got one kidney" or "Not bad for a guy with just one kidney!" I assured him he's just fine. That was definitely the sickest I have ever seen him.

We went to the Rememberence service at Vanderbilt on Sunday. Once a year they have a planting in the children's garden and service for all the children that have passed away that year. It was sort of a last minute decision to go. We weren't sure if we wanted to go and had thought Dale probably wouldn't feel like it, but when he got better we took our extended family and it was nice. I was relieved when during the welcoming they acknowledged that they knew it wasnt easy for families to come. I had struggled with it and sometimes wonder if I'm the only one that finds things like that really hard.
I admit that so much of my grief is about me. The daily problems I have center on me...reliving how I felt with the news when he was born, his illness, what "I" went through. I really haven't learned how to do it any other way. Even going through it twice, I still find that I don't have many words of wisdom for others facing similar situations and I really still don't know how I'm suppose to "do" it. And just like the Martina McBride song says, all those things I don't feel like doing, I do them anyway (most of the time) and just try to keep going.

Summer is flying by. I can not believe how fast. Riley has gone into full gear working on the Alex lemonade stands. She has been so busy with other stuff prior to this that she's been cramming a lot of planning into the past few days. She has an interview with the Christian radio station (90.7) tomorrow and will be on "Midday" on Friday and AM Ky on Monday morning and then I think an interview with the Beaver the next Thursay. So I will be busy toting the little celebrity around. It always makes us a little uncomfortable with all the attention. A lot of her friends and their parents work really hard on this event and she does not want all the credit. It has been successful because we live in a great community and have some wonderful friends. Please say some special little prayers for her as she will be nervous with all the interviews.

Click on the above link to see the website and all the locations.

Well, we should all get busy squeezing all the fun out of summer, school will be back in before we know it. Reese continues to fill our days with laughter. I'm having to come to terms with the fact that I don't have a baby around here anymore. I admit that just 2 weeks ago, we took her out of the baby bed (she's only 3 1/2 and longer than the baby bed). The plan was to move her when we brought Randon home. I just moved her into a different room, I havent had the heart to take that baby bed down and pack up all the baby stuff I had saved for Randon. There is just no easy way to do any of that. I'm still hoping a baby might just show up on our doorstep....it did happen on the Walton's once!

Wishing you all a great week
Carol

Tuesday, June 19, 2007 2:11 PM CDT

It's extra quiet around here... which is sort of nice because we've had a little more of our fair share of excitement lately, but a little sad for me. Reagan is gone to church camp for the week. She has certainly been separated from us plenty but never when I couldnt talk to her everyday. I miss her little funny self around here. She's pretty much my consistent one right now, as in different from any preschool tantrums or 13 year old hormones if you know what I mean.

Riley is at her team soccer camp. It is in town, but goes from about 8 am to 10 pm everyday, so I do get to have her here in her own bed at night but missing her sweet company as well as my built in babysitter.

So, Reese and I should be having all kinds of fun, but leave it to Dale to be the spoiler. He was gone last week and everyday when I would talk to him, he let me know he was feeling worse and worse. Thank goodness he didnt have to drive back by himself Friday as things got really bad for him on the ride home.

To make a long story longer, I took him to the doctor on Friday as soon as he got back and ended up at the ER with him on Saturday the sickest I have ever seen him. He was absolutely miserable with chills, sweats, vomitting, pain and fever. It seems to be a kidney infection and probably a stone and from everybody I've ever known who has had them, they are like childbirth or worse, so I guess I've sorta have had 5 little kidney stones myself, although mine were worth the pain!

He is starting to feel better, he's drastically improved today but still not himself at all. He's going to have some more test done to make sure, but hopefully the worse is over. Thanks for all the sweet notes wishing him a Happy Fathers Day. I'm sure it will be one he wont soon forget anyway.

On a good note, my downstairs computer is fixed thanks to my Uncle Ed. I loved Susan's idea of getting Dale one for Father's Day, I did think about it...so I went with something else that I like (a GPS thing). I had finally set up an account on outlook express on the girls computer so I could check my email without being remote. Now, though, I dont' know how to take that off, and it's very messed up having the email set up on 2 different computers, I still need someone to help me out! MY address book and pictures are all back now and being saved. I'm very excited not to have lost any of that.

That seems to be the 411 on the Miller family this week. I'm pretty exhausted right now from all the excitement. In between all the camps, Riley is tryig to plan the lemonade stands. The website for the event is under construction until she has some time to finish but the address will be
www.firstgiving.com/bowlinggreenlemonade

It should soon have all the details about the event. Sadly, there have been several families in our community that have come to know the world of childhood cancer this year. We hope to continue to help try to make a difference.

Dale is probably downstairs ringing some kind of bell or something for me. Hope you are enjoying every second of the summer!

love,hope and courage,
Carol

Tuesday, June 12, 2007 9:49 PM CDT

I have almost given up on getting my computer fixed. My dear neighbor and friend came by tonight and looked at it and there might be one last ray of hope he is going to try (part he's going to try and find). It is getting old and as much as I would like to have a new one, all my stuff is on there and I'm so use to it...I don't like change. No, I didnt save stuff on disk. I do still have all the pictures saved (I hope), but that was it. I now have to go upstairs and borrow the girl's computer. It's not the same as my nice little office. The computer is off of their playroom, so there isn't my same little peace and quiet to get away and update without so many interuptions. The plus side is since I have to go upstairs and actually log on, I'm not spending very much time on the computer which has been good for everyone!

Riley's been gone and Reagan had camp but we are almost all back home safe and sound now. Dale is basically going to be gone for the next three weeks. He is home on the weekends, but that is about it. The girls and I are just cramming as much stuff as possible in and enjoying each other. I knew the summer would go by fast and it is meeting all those expectations.
Riley has team soccer camp next week and Reagan is going to church camp, so it will be just me and Reese again. She and I have had so much time together. I have really enjoyed her and feel like I am making up so much time from last summer, or last year really. Reese got robbed of her second year basically, I was so sick with the pregnancy for 8 months and then after Randon was born, I was gone. She has been so sweet and I sort of resent the time I had to be away from her. Sometimes it all seems so futile what our family had to go through, but I'm so thankful how resilent they all have been.

I haven't had much time to update lately and I'm still so amazed that there are so many that would continue to be interested in our lives. I admit that I have a lot of anger and frustration just pinned up inside me and no one to really direct it out. Therefore, I find myself often just mad at the world with expectations that no one could meet. A friend of mine always sort of makes a joke about it, but it's true and really not funny that I often find myself putting people into one of 2 categories.."those who get it and those who don't" I want a changed heart that can let go of so many feelings and expectations.
With my computer crashing, I lost my address book. Yesterday, I needed someone's email address and I remembered that they had signed the guestbook after Randon had been born. I went through the guestbook searching and of course while I did, I found myself re-reading many of the notes people had left during that time. I know I read them at the time, but you can imagine what a fog that all has been. However, sitting there reading some of those entries just brought tears to my eyes and a little comfort as I was reminded of the support and outreach we had. It did somehow bring back memories of the day he was born, it's the most painful event to even think about and re-live. I know a few people from our church came down but I was in such shock I don't remember anything about that part. I just remember being completely devastated and all these nurses telling me, or demanding me in a way, to get my blood pressure down. That's almost comical now to think about them coming in over and over telling me it had to come down. I don't know how they thought that was possibly going to help! I don't know how to put into words what it was like and how I was feeling following his birth. I did not want a single person in my face, I did not want a single person to quote me scripture or tell my it was going to be ok. I knew that only myself and Dale really knew and understood what a nightmare we had ahead of us. There was nothing anyone could do or say to help, and I knew that. I did not want to hurt anyone's feelings, but I just wanted to be left alone. It took every bit of strength, courage and fight I had just to allow myself that first trip down to the NICU to see him. My heart to not want to get attached again.

I'm not sure why I just mentioned all that, other than to say that it's no secret that I am struggling. As much as this site has been a sounding board for me, I can't really express all that I'm feeling and going through right now. I think that I'm keeping it all together quite well. As long as we are here at home enjoying each other, I do pretty good, but even the simple tasks that involve stepping outside my zone and dealing with the world are so painful. It's constantly on my mind, and while I try to positively focus on all the good in my life..which is numerous...the pain just still feels so fresh. I can't believe it's approaching a year since that day of his birth. I sometimes wish that had I known how it would end up yet again, I could have spent more time just celebrating everyday I had with him. I know there is not an easy fix, not for my pain nor for my disappointment. All I can do is continue to try and trust that God has bigger plans for us than we had for ourselves. I remind myself daily that without suffering, we would not know compassion.

My dear friend Susan sent me this link recently. I hope you all can cut and paste somehow and go see this video. I ordered it and would love to share it on here if I thought it was legal. Since I'm not sure, here is the link:
http://www.ignitermedia.com/products/iv/singles/570/99-Balloons

(warning:if you are at work with a lot of people around, or fresh mascara, you may not want to watch)
that was such a blessing to me. I wish I could have celebrated Randon more.

I wake up everyday with the determination to have the best day I can and to be the best mother I can possibly be to my children. I'm far from the perfect mom, but I'm blessed to have the perfect family for me.

I hope you are enjoying every minute of summer.

love, hope and courage
Carol

Friday, June 1, 2007 5:39 PM CDT

We have a computer fixed...for the most part. The part came in for the girl's Dell and it was working great. Then one day it wouldnt turn on and after sitting unplugged for a day..it decided to work again. Hopefully, we can stay connected for a while. However, most of our stuff was on the main computer which is still not working. I still have to check email as being from a "remote" location so I dont' have my contacts and addresses.

Riley is getting in full swing to plan the Alex Lemonade Stands for July 7th. Unfortunately, all her contacts and emails from last year are on our main computer and we don't have access to them. If anyone is interested in being involved this year, please contact Riley at rcmsoccer@insightbb.com or alexslemonadebg@insightbb.com.

It's another weekend and I haven't even had a chance to update about last weekend. We got to get away to the lake with some friends and had a great time and Memorial Day!!

We've officially hit the summer ground running. I will update more soon, but I have 4 little girls (the extra is my niece) standing over my shoulder begging to go do something. So, I better get off of here before I sound even more crazy than I already am.

Please pray for Riley this week. She is going to FL with a friends. I'm a nervous wreck. I know she will have fun but it's going to be a long week for me.

Hope you all are hitting the summer hard as well.

love, hope and courage
Carol

Wednesday, May 23, 2007 8:29 AM CDT

Our world has changed somewhat as I have had no computer access for over a week now. Both of our computers, one which is fairly new, just quit working...wouldn't even turn on. I've ordered a part from Dell for one. After spending about an hour on the phone with this guy from India that I could not understand a single word....I'm still not sure if this part is what I need but hopefully it might!!! I go to a neighbors or friends every now and then to check email, so if I havent responded to you, now you know why!!

I will update more when I get a computer fixed. We are just enjoying being out of school and already swimming and playing like crazy. Hope you all are having fun too!

thanks for all of the prayers for tomorrow. Just plan on staying busy and getting through. I'm always touched by so many remembering this difficult day and Reids too short but wonderful life and the joy he brought to so many of us.

Love,hope and courage

Carol

Friday, May 11, 2007 9:29 AM CDT

I can not believe it has been a week already since I’ve updated. Thanks so much to all of you that got more info or decided to participate at marrow.org about the drive as well as all of those that went to the drive here in Bowling Green this week. I appreciae those of you who let me know that you did it. We are thrilled to know that our boys lives may have helped inform others to get into the registry, and who know what could happen from there. Hopefully all this will get so many more people in the bank. We were so fortunate to have sibling matches both times, it would have been so difficult to try and worry about finding a matching donor on top of all the other anxiety we were facing. After being tested for Reid, Dale and I went into the national registry. Some of you were wondering, but fyi, the only people under the age of 18 allowed to donated are siblings. Therefore, Riley and Reagan could never be a match for anyone else other than siblings.
When Reagan was the donor, she was up and RUNNING around the same day like nothing had ever happened. They say adults experience much more soreness (actually donating not getting in the bank)but I don’t think it’s usually anything that keeps you down more than little bit.

We have had a busy week. Dale was gone yet again this week and we are just getting through these last few days of school. I can not believe that there are only 4 days left after today!!. Riley is definitely on my “list” today. Last night she had the awards program at school. She got all fixed up and I thought looked great, so I took a few pictures of her before we left. Well, I knew she was looking at them in the car on the way over and commenting she didn’t like them, but I didn’t know she deleted them!!!! I went to download them this morning and….gone! TEENAGE GIRLS!!!! They can make me a little crazy!! She thinks she has full editing privileges with my camera.

They recognized the top averages in all academic subjects last night and we were very proud that she got 4 awards. I think it was a little emotional for me because I really reflected on the year that she, and Reagan too, have had. School started two weeks after Randon was born. Even though I feared it, I was not prepared…how could you prepare for that. Riley made the soccer team the day before his birth and that started full swing the next day. Everything was in chaos in addition to the emotional heartache and disappointment we were all experiencing…all complicated by the fact that we were separated. Dale and I were not there every morning when they left, nor when they came home in the afternoon, nor when they went to bed at night….all the things that it’s very hard for anyone to take our place (although we had great substitutes) . They too have had to deal with not only their loss but worrying about me and once again experiencing the difficulties of having a very sad mother. I thought about how both of them made straight A’s all year, and never got into one ounce of trouble. I need to let them know that in our book, they definitely are both Students of the Year! I just can’t believe another school year has come and gone.

I got a phone call this week from church about the baby dedication this Sunday. I do often fear with being such an open book on this webpage that I might send messages that make people feel like I was talking about them, or upset by something that was done to me. That is never my intention when I mentioned last time the heartache of having to deal with that this year. But very thoughtfully and lovingly, they wanted permission to include Randon and another baby who didn’t make it to Mother’s day, in the baby dedication. I’m not exactly sure why Baptist call it “dedication” as opposed to ‘Christening or baptism’ I don’t think there is much difference other than using wording that makes it clear that it is not a pastor’s blessing, prayer or touch of water that will save the child. It is just a commitment or dedication from the parents to commit their lives back to Him and seeking Him first as we do our best to raise our children. I realize that Dale, I and the girls did have an opportunity to dedicate Randon, although not publicly. From the moment he was born, we had to realize that ultimately he did not belong to us. We knew too well that he would only be ours for a time and that this life is not all there is. Although his life was short, it was no less significant or celebrated. I appreciate their desires to include him. Dale and I discussed it, and we probably still wont be able to be there but we are touched that he will be remembered. There will also be moms missing for the first time this mother’s day which makes it an incredibly hard day for many others. I’ve learned there is no comparison of pain…it all just hurts!
Someone shared these thoughts from Lamentations with me and I find them really appropriate:
“He shot his arrows deep in my heart. The thought of my suffering and hopelessness is bitter beyond words. I will never forget this awful time, as I grieve over my loss, Yet I still dare to hope when I remember this: The unfailing love of the Lord never ends! By his mercies we have been kept from complete destruction. (3:13;19-22)

For all of us who are fortunate to still have our mothers or to be mothers, Happy Mother’s Day! For everyone who is experiencing the pain of loss this year, I pray that the truth of God’s faithfulness and comfort will be more evident than the pain, although we know we will never forget.


I’ll share one picture that I was able to get at the ceremony and probably only passed Riley’s editing because she hasn’t seen it and one of Reese just for fun. Next update, Reagan is due for a little showing off! I will have to catch some of her!

Love, hope and courage
Carol






This is even funnier when you see her dressed this way on the lawn mower with Dale "helping" him!

Friday, May 4, 2007 8:43 AM CDT

***I wanted to let you know about the drive going on at marrow.org. Now until May 21, or sooner if funding runs out, you can register online and receive a kit in the mail to put you in the registry to see if you could be a bone marrow donor for someone. It is free right now and requires swabbing rather than blood. Check the website for all the details.





It is probably a good morning to go back to bed (a little dreary here) but I’ve got too much to do for that.

Thanks so much for all your kind and encouraging notes to me this week. I’m always thankful for the encouragement I get, even from so many I’ve never met, it’s like having my own personal support group.

Testing is over so I’m hoping that we can sort of coast through these last two weeks of school and the homework won’t be so bad. I still can not believe it’s that time of year. Summer is going to fly by.

As usual, Dale has been gone this week. He actually got home late last night and is leaving out again today for Nebraska. He’s usually not gone on the weekend. Of course this weekend both girls are in a soccer tournament and have 8 oclock games both Saturday and Sunday (8 is so much earlier on the weekend than weekday). It’s just going to be a long day for Reese but I think I can pawn her off on my sister in law.

I have had a better week. The girls and I have had a good time every night. I have a Riley story. She told me she was going to have to watch the “Sound of Music” during music class this week. I told her she was going to love it!! She gave me that look you can imagine a 13 year old would give when thinking of the idea of enjoying this “corny” or maybe she would use the word “lame” movie. Later in the week, she confessed that I was so right. She loved the movie and couldn’t quit talking about it. She wanted Reagan to see it (knowing how much she loves history and music). I was a little bit disappointed with myself that we hadn’t watched it as a family sooner (before having a teenager). Well, we watched it together this week at night and just had a lot of fun with it. I think they have every line memorized (they get that trait honestly) Reagan took off toward the bus singing “Do Ro Me” every morning. It took us 3 nights to finish. I’m sure it’s not cool at school to act like she loved it like she did, but I was impressed that she and all the girls I’ve had in the car lately that had seen it, were gushing about how good it was. Now she is inspired to watch some more musical/ older movies like that. Of course, Reagan wanted to know if I was alive during that time.

I also spent my week doing some things to take some focus off me. It’s always true that when you have an opportunity to do something for somebody else, you are the one that feels better about yourself. What I did was really no big deal but I just got a blessing by once again being reminded about the real goodness of others and the compassion and love that is in so many. I find an instant improvement in depression and bad days is to do something for somebody else. As I always so, you don’t have to go to Africa to find someone to reach out to.
I got the opportunity to visit the soup kitchen at our Salvation Army recently. I guess I always knew it was there but really knew nothing about it, much less actually visit it. Later that week, Riley read a poem at the Volunteers in Action reception and the rookie of the year award winner this year (the one Riley won last year) was a lady who volunteers to cook the noon meal everyday at the Salvation Army. I was so impressed by that level of commitment. What a way to use and share your talent!!

A few days back, I was reading through our church newletter that comes in the mail. There was a little side bar note that said: If you’ve been blessed with a baby this year, please call the church office to sign up for the baby dedication.” Wow, what an arrow through the heart. I’ve had so much going on I really hadn’t thought about the approaching Mother’s day and baby dedications. I was definitely blessed with a baby this year. Sometimes I have a problem with the word “blessed.” If we’ve been “blessed” with children, then does it mean those who have not have been the opposite of blessed, maybe “cursed?” I’ve learned that the Hebrew meaning of blessed means: “to find the right path.” I think that blessed then has more to do with finding the path that is meaningful in midst of the difficulties that surround.
I wondered if I should put my big girl face on and be there to support others. I decided this is one of those times I don’t’ have to be strong. I also realized that if I did go to church that Sunday, it would probably just make the one’s with babies uncomfortable (more so than they already are around me) and take the joy from them. So, I’m not sure how we will celebrate Mother’s day. I do know that I’m so blessed (because I know what happiness that path has led me to) to be the mother of my wonderful children AND so blessed to still have a healthy, capable, wonderful mother myself! While it will be a very hard day for me, I’ll try to keep focus of that. I hope the month of May goes as fast as April.

I think I’ve gone on long enough. Riley and I found this Ann Frank quote the other day: “How wonderful it is that nobody need wait a single minute before starting to improve the world.”

Love, hope and courage
Carol

Oh, Riley and her friends are again wanting to do the Alex Lemonade Stands in Bowling Green this summer. July 7th is looking like the date!

Thursday, April 26, 2007 8:06 AM CDT

The big girls have been excited about havng CATS testing these next 2 weeks because that means no homework! I think they would just love to test all year. I was hoping that would mean we would have more time at night to go for walks and do fun stuff but it just seems that has been filled with other things. I think school is on the downward slope and even though they have both had really good years, I’m looking forward to school being out and things slowing down.

It seems that since we’ve been back from Spring Break I’ve had a little bit of a harder time. I’m afraid that we are not going to be eligible for the study at NIH. They called wanting more information and told me they were still trying to determine if we were actually eligible. Evidently we had only been eligible for the first stage, which must have just involved feeling out all the case history information. Vanderbilt assured me at the autopsy meeting they would call and talk to them at NIH and send all needed information to them. When I followed up this week, of course, Vanderbilt had not contacted them. This will be such a huge disappointment because I’m afraid it is our last hope of finding the gene that caused this unbearable heartache in my life. The thoughts of what face us ahead if they do not find it consume me with more heartache and worry.

My frustration levels seem to be at a constant high. My emotions are more on the extremes. When the girls and Dale are here and we are together, I seem to be on the extreme happy end, but otherwise it just seems the slightest thing can set me off. I now take wasting time and money very seriously and it seems I’ve found myself in situations that were causing me to do both. I think I do a really great job carrying on and just moving on as normal, but it’s not that way on the inside. No matter what I’m doing or how I seem it is constantly on my mind.

There have been a couple of events I’ve learned of this week that have also served to remind me that there is so much heartache and troubles around us. Even though I may feel at the bottom of the pit some days, I’m not alone and continue to have so much to be thankful for right now. As a friend said last night, every breath we take is blessing. I’m trying to work harder on my heart issues. I desire to be more understanding in my grief, to quit keeping this mental score of how I feel people have responded to our pain or feeling avoided. I believe that I’m becoming more aware that the reason I feel so stuck right now, stuck in the sadness and heartache and even anger is that my heart has not been able or willing to let go. Spiritually, I’m really numb. There is just no sugar coating that. I definitely know that something is not right. A couple of weekends ago, we were having our family movie night and Reagan suggested “Facing the Giants” I had the most bizarre reaction to that movie (and I don’t want to give it away if you haven’t seen it). Part of me was excited that such a great movie made it to the bigscreen and how wonderful to have such a inspiring option for families. I would definitely recommend the move, but Then the other reaction I had was just real anger, almost disgust. I told Dale later that night that I thought that movie was part of the problem I’m having with some Christians and the Christian faith. To me it presented a message of if you just pray hard enough, believe enough, trust enough, surrender to your faith, everything not only turns out ok, but you get everything your heart desires, life becomes perfect. I’m just uncomfortable with where that message leaves me and a lot of other wonderful people I know. Reid, Randon and our family could not have been prayed for any harder. I could not have believed, especially with Reid, any more; yet I still had to endure unbelievable heartache and moments of pure trauma that I don’t’ think I could ever accurately put into writing. There is a verse in the Bible that talks about the mothers who’s baby boys 2 years and younger had been killed by Herod’s soldiers…..A voice is heard in Ramah, weeping and great mourning, Rachel weeping for her children and refusing to be comforted, because they are no more. (Matthew 2:17). I’m not sure of the significance of the refusal to be comforted, but that is what I feel, sometimes there is no comfort for our losses..or maybe it’s that they didn’t need comfort just yet, they needed to be able to lament and feel the sorrow just as Job did. Perhaps the comfort came later.

Right now I really feel like there is just so much heartache and sadness. There is a new friend in my life that is just heavy in my heart and mind right now. The only thing I understand is that when I’m having a moment of pure happiness and things seem good, I need to really enjoy and appreciate that, I can’t change the past but I can work really hard to ensure that my life does not become consumed with bitterness and letting the sorrow ruin the good moments.

Thanks so much Susan for sending the One year of Hope devotional book . It is really helping me on my journey of really being able to enjoy life again.

This just continues to be my favorite picuture right now. I chose not to sit in the soak section!



love, hope and courage
Carol
(the ER story is not that great, but I will get to it…it’s about taking my sister in law there)

Cool Slideshows

Thursday, April 19, 2007 7:44 AM CDT

Cool Slideshows

Here are some of our pictures from the trip.
I'll tell you more later.

My friend Catherine called me the other day and shared with me something she saw on a church sign out front. I thought it was great and I would share it with all of you:

"Grief needs compassion, not advice!"

Hope you all are having a good week!

oh, the girls wanted to sit in the "soak section" of the Shamu show:


Carol

Tuesday, April 17, 2007 7:33 PM CDT

Hello to all!

Yes, we are back!! The trip was fun, it was quick..we only had four days, so, we did 2 days of Universal and 2 days of Sea World and went back to Universal at night. I brought the cold weather with me for the first couple of days but we did get to see the sunshine the last two. We made it back safely and have just been wide open since we've returned.

I hope to update more details and pictures tomorrow. I have just been swamped these past two days. Dale is out of town and I've got to get the girls to bed. I've been with his sister most of the day as she had to have a minor surgery. She is doing fine now, but just got back from the hospital. We had a crazy night at the ER last night, but that is a story for another day!!

Thanks to all of you for checking on us and for your well wished. thanks for all the birthday wishes as well, I did have a birthday a couple of weeks ago, but I'm not counting them anymore. (Amy, I'm impressed you remembered..I think I remember that yours is in May because I remeber your mother calling you a stubborn Taurus!!)

Hope all of you who were on spring break had a nice break as well. I've got to now get some serious spring cleaning done!

best,
Carol

Saturday, April 7, 2007 5:32 PM CDT

Happy Easter!

Just wanted to drop a little note to let you know we have made a very last minute decision to go to Florida for spring break. In order to get away from the freezing temperatures, we are going to have so go all the way to Orlando (ahh, poor us). It's been sort of cruel going from the beautiful weather last week, to the little bit of snow I've seen today and all the freezing!!!

We are making this a girls trip with my mom, sister and girls. We just all needed to get away and Dale was traveling and couldn't (or wouldn't I guess), take off with us. So, we are excited but scrambling to get plans made and packed. We are going to leave after church tomorrow. I planned Disney on two weeks notice, so I guess I can do this on 2 days notice.

Since we've recently done Disney, we are going do Universal and Sea World and some of those things. I hope maybe to relax a little more than we did at Disney, but being realistic that that probably will not happen. Holidays are always hard, even the little ones. I'm looking forward to some time away.

I wish everyone a great Easter and wonderful celebration with family and friends. We will return next weekend.

love, hope and courage
Carol

Monday, April 2, 2007 7:11 AM CDT

It's Monday morning and Dale and the girls are off to work and school and Reese is still asleep. We survived our extremely busy weekend and although I did not accomplish all that I wanted to do, we had some great times. I got busy this morning trying to clean out soccer bags and survey all the damage to our house from the weekend. I decided to put it off a minute more and enjoy my morning coffee while Reese is still asleep and I felt like writing.

The race turned out to be wonderful. I haven't heard any official numbers, but I wouldn't be suprised if this one did not have a record breaking attendance. It was really a great time. Seeing all my fit friends out there looking good and running 13 miles or the 5K really made me want to be a runner. I mean I really want to look like them and go to races like that and have fun, I just don't want to actually run. I haven't exactly figured out how to make that work but I may actually break down and try to run to the paper box this afternoon. I would say mailbox, but my mailbox is about half a mile from me....maybe that can be my goal next month. My dear friend Michelle who has betrayed me, (we were both committed to not being runners) did a great job in her very first race, I was so impressed. She has asked me many times to join her...(deep sigh) now she's too much of a real runner for me (and she has the cutest running outfits, did you know they made runnig skirts like tennis skirts now? News to me) Anyway, between the race and the great weather I am motivated to get my running shoes on so we will see what happens.

It turns out that there is another crazy family in this town that also allowed their child to play both travel basketball and soccer. Fortunately for me, Riley was able to tag with them this weekend as they had to go from Cookeville, TN Saturday morning for basketball to Hopkinsville, KY Saturday night for soccer!! Having Riley taken care of really opened up my Saturday. My sister in law, Mindy, took Reese all day so Dale was able to go to the wedding that was out of town.

That left just me and Reagan onSaturday. I have to just really take a moment and describe what a trooper that little girl was this weekend. I think the hardest part of having more than one child, is spending just the one on one time with each of them. I felt like I got to do that with Reagan and being in the middle, she is the one I do that with the least. It was very important for her to be in the church pageant. It was not convienent at all for us this weekend, but she really wanted to do this. So with the help of my friends Tim, Robin and Marya, Reagan go to be at every practice and performance Thursday,Friday, Saturday and Sunday. She was probably one of the few children in it without a parent, but that did not deter her one bit. I would just drop her off and she never missed a beat. So after being up late both Thurday and Friday night after those perfomances I have to tell you what she did. She had committed to run the children's one mile run in the race. Like me, she is not much of a runner. However, she knew how important this event was to me and wanted to do it for me and for the cause. As she went to bed after 10 pm on Friday I told her to just sleep in that morning and not worry about running. She insisted I get her up. I figured her tune would change at 5:45 am when I would have to get her up. I started to just leave the next morning (I needed to be there at 6) and let Dale get her to Mindy too, but decide to ask her anyway. I gently patted her back in the bed and said in a low, sweet voice, "Reagan do you want to go run or just stay in bed this morning." She sat straight up and said, "I'm going with you to run." So she got dressed quickly and went with me at 6 am! I can't tell you how much I enjoyed her all day Saturday. She never complained. She ran that mile (which is huge for her) and just stood by helping me with whatever else was going on. We had the best conversations and she wanted to know more about the Family Enrichment Center and child abuse and I couldn't begin to describe all the conversations we had when it was just the two of us. Of course, I've always thought my kids were great, but this weekend I just had this real sense of "Reagan is awesome!" I think my time with her is what has me coming off a weekend high! I even tried to talk her into sleeping in yesterday morning and not doing the pageant since she had had such a long day and was going to have soccer that afternoon....but she won out again, and still never complained but has this constant zest for life and smile on her face. In fact, after the program again that morning and then going to Hendersonville for two soccer games that afternoon in the heat, she wanted to go walk a mile with me after we got home...so we did!!! I sometimes really feel that God definitely hand picked Reagan to be in this family. Sometimes, her heart and her life are what help my faith and my stuggles right now more than anything. She definitely has the strongest faith of anyone in this family!

We did not make it to Greenwood's musical. I heard it was great and hoping to see a DVD of it. It turns out the cast party happened at my neighbors!! Hope they had a great celebration! We also had to miss the fund raiser for a baby her in town that has leukemia. I hope it was a huge success as well. It was nice to run into and meet Mindy this week and learn more about this other family that is struggling with an all too familar situation.

I pray you all had as wonderful a weekend as I did. I highly recommend spending that one on one time with your children or anyone in your life that you really want to bond more with! Sometimes, even when we think we know somebody, we always learn so much more when we just have that time together.

My heart is really heavy as I head into Easter and spring break and just more days and holidays without my babies. There are alot of issues weighing so heavily on my already somewhat broken heart. I pray for more days of sunshines and best hugs ever from Reagan!!

love, hope and courage
Carol

Monday, March 26, 2007 2:03 PM CDT

Not sure where I have been other than running girls around like crazy and having soccer marathon weekends.

School was out Thursday and Friday so we took off Wednesday night and had a mini spring break in Nashville with my family. Reagan, our history buff and can't-learn- enough child, had the time of her life when we took her to the Hermitage, home of Andrew Jackson. I've literally lived down the street growing up in Nashville, but couldn't remember that much about it. So the girls and I as well as two of my nieces who still live down the street from it went and had a great time. Everytime I go, I learn or remember something new. I'm sure it's like most people who grow up here in Mammoth Cave's back yard, it's always been there so you don't think about taking your kids. There are a lot of historical things around here and I hope to make more of an effort to get to them with the girls. Have you seen that book, "Things to do (or see) before your 12." I know it's too late for Riley, but it's really has some neat ideas.

As most of you know, my dear friend Nicki (Isaiah's mom) had a stroke last week and that has been very scary. She then finds out she has a hole in her heart. Luckily, things could have been a lot worse but again just more issues that I wish they could have been spared from. It has been a wonderful opportunity for friends and church family members to come together and help. So many admire them a great deal and want to help, but haven't always known how. There will be many opportunities now as she recupperates and has another surgery. As those of you who have a chance to give or help often have probably experienced, the blessing is always more in the giving than receiving it seems. As Nicki and I have discussed, the hardest part sometimes can be letting others help you and admitting you need it. I admit I'm very strong headed in that area.

We've enjoyed beautiful weather. I think we've skipped spring and gone straight to summer. Reese ask everyday if she can go swimming. I had about 9 gazillion things that needed to be done today, but we instead spent several hours at the park with friends, just playing and feeding the ducks!! A little sunshine does much more for me than cleaning the house!

We have an extremely busy week coming up. I'm not exactly sure how it's all going to get done. The Family Enrichment Centers Mini marathon, 5k and childrens fun run is this Saturday. I have been working hard to help coordinate the Children's race. If you are local, please come out and walk or run or make your children run (haha). Riley is too old this year but was going to run the 5k. However, she has both soccer and basketball that weekend (and Reagan has soccer), so she probably won't be able to. Dale has a wedding out of town and Reagan wants to be one of the children in the Easter pagent at church this weekend. Oh, and we also want to see our neighbors Brianna and Katelyn in Greenwood High's musical.We will get it all done somehow, just makes my head spin to think about. Come out and support the Family Enrichment Center if you can. It's a great race (and the T-shirts are really cute this year).

It's about time for the bus to get here and how the rest of the day will be crazy. Just glad that at the moment, that how we are going to do everything is our biggest concern.

Have a great week!
Carol

Friday, March 16, 2007 7:16 AM CDT

I once again can not believe it has been a week since I've updated and a week since our appointment at Vandy.
I saw many of you out this week who were so kind to ask about it and let me know you were praying for us.

It's really hard to talk about, but as with many of my other feelings, easier to write about. Everything went as good as expected. We got through it and as expected didn't really learn anything new or even helpful. Everyone was nice. It always feels great to have Dr. Dermody faithfully on our side, in our corner and just a huge encourager and friend. It was one of those things I just couldn't think that much about, I just had to do it with my mind taking it one minute at a time. Otherwise, it would have been impossible. I did not want to be a big sobbing mess in there-and I was determined not to be. Overall I did well, with really just one little moment at the end and it was when they ask us to think about coming next year to talk to the first year medical students (giving them a family perspective). I have until April of 2008 to decide if we can do it,but we both feel like we should.
Basically, the boys' manifestation of the diseas had so many differences that it now makes it even harder to decipher what is the primary problem (bone marrow, leukemia, fibrosis, etc.) We still have more unanswered questions than answered, I think all we know for sure is that it has to be genetic. What gene and how it's passed down is unknow so until they can figure that out, we will never know if the girls are carriers. I'm still amazed that with all of technology we can have something that they can't figure out. It's really hard to explain it all without giving a review course in genetics but I continue to be hopeful that something we come up in the next 5-10 years or so. We are also still hopeful about the NIH study, but still just waiting to find out the next step.

I was talking to one of my dear friends this week and we were talking about the usual balancing check books, spending etc. and she got a chuckle out of one of my accounting practices (like how I do almost everything online and trust the bank too much). So, she asked me if it didn't worry me about identity theft. I was silent for a second, and said, "Really, come on, who would want to be me!??" It gave us a good laugh for about 5 minutes. I know it sounds crazy, but sometimes making a joke out of it is the best medicine. I know, before you all email me and tell me thats not true, I know I have a great life...I honestly would not wish to trade places or lives with a single person I know. I have enough heartache to last more than a life time, but my family provides me more than enough joy. We both just had a good laugh together thinking about someone wanting to steal my identity! I know I'm blessed to have the family I have. It doesnt help the sadness or take away the pain and that is what I find so hard to deal with, how to continue on in the happiness when I'm also so heartbroken. I very easily feel so overwhelmed, almost panicky and paranoid often. I often get nothing accomplished because I spend too much time feeling overwhelmed. I was pleased to read something this week that described this as normal feelings of grief.

Grief and depression are two different things, with some similar characteristics. Sometimes that information is hard for me, as I know there are no treatments for grief. I know that no pill or therapy can take the grief away. Sure there are coping strategies that help, but it is overwhelming sometimes to realize that this grief will be a part of me forever. I have moments and even days were I do get stuck. Stuck in the flashbacks of all I've endured and stuck in the heartache. Finding my place and where I fit in back in the real world is a daily challenge. It is always easier to surround myself with those who have loved me unconditionally and really have no expectations of where I should be or what things would be good for me. I don't even know myself, so I take it just one week, one day, one moment at a time. I'm so lucky to have such support in my life. One of my friends just called and told that they really "get it" with me, that they understand coming out of the pit is difficult and I don't expect them to have all the answers or to fix anything, I just appreciate their faithful friendship. I"m constantly overwhelmed with the people I see out who tell me they still follow our story and pray for and think of us often. There has to be a bigger purpose for all of this.

I read something the other day that I thought was profound. "You never know how much you really believe anything until it's truth or falsehood becomes a matter of life and death to you." (CS Lewis) I would encourage anyone to really think and remember that, especially when you are in a Bible study group or any kind of group when you might be discussing what you really believe or how you think you would react under crisis. I admit that during my trials, my confidence has been shattered and my emotions stretched beyond the absolute breaking point. I have felt anger against God (that is honesty), resentment against friends and acquaintances, I have felt absolutely faithless, unfairly chosen or picked on and even doubt..doubt that prayer really matters when I've experienced or felt totally no response to many prayers. I have found that it's ok to cry out and lament. Job did it. I beleive its ok, maybe even natural to feel all those things. But it has taught me so much. There is no way to explain this toxic, sad world. My troubles have paled in comparison to others, and although that in of itself does not comfort me (I don't find solace in other's troubles) I do know that pain has taught and strengthened me so much. I and others can not live a life in constant fear. Knowing so much pain its only natural to fear it in your lives. You can't be naive enough to belive that because you don't want it or because you couldn't handled it or because you pray for God's blessings everyday that it wont happen to you. But you can't live in fear. You have to continue to live just in the moment. As we often hear, the moment is the only thing you are guaranteed. Continue to be sensitive to those around you, we never know the heartache and pain they carry everyday, even with a smiling face on the outside. If anything good could come from my sharing every detail of my pain here, I hope that somehow it could encourage anyone who wants to reach out to someone who is hurting, but doesn't know what to say.


Dale and I are going to our 3rd hockey game this weekend. He has definitely been hooked on the Nashville Predators. It is something we've enjoyed doing together. He needs all the releases he can find. We will probably be gone most of this weekend again. We're going to Nashville for the game Saturday and will probably stay and attend a memorial service Sunday for a dear famiy friend who lost his long, long difficult battle with Parkinsons- Another family who have taught me so much about enduring pain, being survivors and remaining faithful.

I wish you all a great, safe and happy weekend.

love, hope and courage
Carol

Thursday, March 8, 2007 7:17 AM CST

I just poured my heart into an update and hit one little wrong button and the entire thing gone!!!!! I can’t believe it...makes me wonder what was in there that I wasn’t suppose to share!! I guess I will give it another try!

I appreciate all your sweet emails and notes from last week. Thanks to Judy for sending me a copy of the Oprah tape. I was so excited to have it on tape. I did follow someone’s advice and get the transcript from the website, but vey excited that someone could send me a copy. Having this caringbridge family that watches out for me is such a blessing. I also appreciate some of the stories you all shared with me about the heartaches you’ve endured. I continue to be so encouraged from others whenever I’m feeling totally discouraged.

Dale has been traveling a lot lately. The only up side to it is that the girls and I eat out often. Dale is the picky one as far as restaurants go, he has his few staples and that is what we choose from...never really wanting to venture out. Riley and I are always up for trying new places, so we have our favorites that we can only go to when he is out of town. We went to one of them this week. I had not been in a long while. When I was pregnant, it was one of the few places that actually sounded ok to me, so we did go there more often. When I was gathering everybody up and getting ready to leave, our waitress (in her broken English) asked about me having a baby (she remembered me being in there pregnant). I just said "Yes, I did" anticipating an ackward moment coming. She asked how old he was, so I told her what had happened. I could tell how horrified she was and wanting to run and hide. She said, “oh, I should not have asked.” But what I really felt was, “no, I’m so glad you did. I did have a baby 7 months ago and it seems so much more natural to admit that it did indeed happen then how everyone else avoids the subject at all cost. Most can’t even mention any thing that happened when I was pregnant much less say the 'p' word in front of me. I was, in an odd way, glad that she asked. A few months back, Dale and I had been running some errands and again ran into someone who only knew us as customers. Dale was inside and I was out in the parking lot doing something and she could see me through the window. She asked Dale, “Didn’t your wife just have a baby.” He said he just said “yes, she did.” She then said, “well, tell her she looks great!” When we got back in the car, and he told me what she said, I thought I was going to cry. For a moment, I got to enjoy a “normal” new mom moment. I never got the joy of seeing my birth announcement anywhere, or having a baby shower, or any of those typical things new moms do, yet I went through every single thing other new moms do. Hard to put into words exactly what I’m trying to describe, but I just wish that person at the restaurant didn’t feel so bad for mentioning it. What she did was actually more natural. I wish she knew that it’s so much harder on me for all those who have never mentioned it. I know I sound like a broken record on that subject, but it continues to sometimes but the source of so many awkward moments. I had not talked to someone recently in a long time, since I was pregnant and I remember a vivid pregnant conversation we had then. This person called me recently to ask me a specific question. The entire time I was on the phone, all I could think was please mention it, this conversation seems completely fake….it would be so much better if you would just acknowledge that I’d pretty much been through the ringer since we last talked. She never did, and it was just further encouragement for me to learn how to let that go. I can not expect them to really understand or to even know an appropriate response since they just don’t have a clue of what it’s like to be in my shoes. Again, I know they would never want to do anything to cause me more pain and I have to learn how to really just understand their perspective as well.

There have also been a lot of tears around here lately. Poor Dale, I think he sometimes just doesn’t know what to do with me. I’ve decided that we must have been designed to have tears for a reason, so I’ve just gone with it and gotten good use out of mine.
Tomorrow, Dale and I have to go back to Vanderbilt Children’s to meet with about 5 or so of our doctors to go over the autopsy results. I don’t think we will learn anything new, just an opportunity to get everyone in the same room and for all or thoughts, questions answered as much as possible. I’ve been dreading this, but since I completely hate whining, I’ve tried to put my big girls pants on and just do it. For those of you who’ve never done anything like that, it’s just incredible emotional to sit in a room with these professionals, while although most are compassionate, go through “slides” and all the professional jargon, but to you…it’s still just your perfect baby. If it is a replay of last time, I will be too overcome with emotions to be able to say or ask what I would really like to. I’ve prayed hard about my feelings for one of them. I think sometimes they are able to control their compassion and be the ever present professionals. When it’s your child, you still need to see the compassion. I know they see heartache everyday and I would not want their jobs for anything, but I still believe that when it’s your child, all bets are off, you really have no idea what you would do until you are there. Some of them were just better at communicating their true care and compassion than others. I will never forget that as things were coming to an end with Randon and difficult decisions had to be made, I requested to see one of his ICU doctors. We had not had her much this time, although we had also had her with Reid, but I very much valued her opinions. I wanted to know what she thought about Randon’s condition and the decisions we had to made. She spoke very bluntly with me, it could have been taken as uncaring…..but there was one huge difference…..as she told me matter of factly what the facts were, big tears were streaming down her face. Her tears spoke volumes to me. I knew this was just not another patient she had to deliver hard news to, but that she cared so much that she would never say these things to me if they weren’t true. I’ll never forget that moment, it was an example of how we say something is probably more important than what we say.

Thanks in advance for the prayers to get through tomorrow. We seem to have a lot of “stuff” going on around here. We are all busy going in different directions and as a family, we have been talking about what we really want to do with our lives. Sometimes how we know we should be living and how we are living don’t always agree. We want things to be more simple, but haven’t been making the effort to get it that way.

Thanks also for your kindness with my dad. He is still doing ok, His other artery also has some blockage and he will probably have a surgery decision in his future.

Well, the gang is all here, so I need to get back to them. Hope you all have a great weekend.

Carol
Laura Ingalls on dress as your favorite book character day

Friday, March 2, 2007 8:21 AM CST

Reese had picture day this week and I noticed how huge she seems.



Thank you all for your sweet notes and emails as well as prayers for my dad. Actually, this has been a good week. All the memory loss that my dad suffered during his episode has completely returned and he really has no complications left from the TIA. Since his left carotid artery has completely closed, his right side is now doing all the work. He had another test Tuesday to determine the condition of the right side. I know they have not heard any results yet so hoping good news comes from that. Those of you who know my dad know how fit and exercise crazy he is. Just further proof how much genes play into our health, although it’s probably his healthy life style that allowed such good results from this TIA, which I fear could have been much worse.

So, we’ve been fortunate to have an uneventful although very busy week. This is the first time I’ve had a chance to get on the computer. Yes, Reese is still asleep, so I thought I better get on here while I can. I wish I could share the tricks for having such a good sleeper, but it must also be genetic. All the girls have always been good and late sleepers. We did play a little musical beds this week. I put Reagan to bed Wednesday night and as I will do if I don’t get up pretty soon, I fell asleep in her bed with her. It stormed that night and wow, what a difference when you are upstairs. So about 3 am, I went back downstairs to get in my bed, only to find Riley in my spot. She had a friend staying with us that night, so I was wondering where she was. I did not want to go back upstairs because I could not sleep with the rain. I finally got Riley scooted over enough so I could squeeze in. It took me awhile to get back to sleep, and just as I did, Riley decided to go back upstairs to her bed….waking both Dale and I up. We are excited about getting to sleep in tomorrow. However, we are experiencing the joy of the new neighborhood being built on the farm behind us. They like to start banging that hammer about 6 am. Did I mention there are 252 houses going up back there….going to be a long summer.

Ok, did anybody get a chance to see yesterday’s Oprah.? I rarely, if ever, watch TV. What times our TV is on it’s most likely on Disney. I have probably seen every episode of That’s So Raven and Hannah Montana, but I have never seen Lost, or 24, or Alias or any of those other series everyone talks about. When I was sick and pregnant on the couch, I did see a few Grays’s Anatomy and followed one season of American Idol (when I was pulling for Chris).
Anyway, with the bad storms yesterday afternoon, I had the TV on in the kitchen while I was cooking and got to see Oprah…I’m sure it was a God thing. I wish I had taped it. It was about people who have been through hard, difficult times and what makes some resilient while others aren’t.

One lady had experienced years of infertility before having her son. When he was 2 years old, she and her husband and son had a friend fly them in his plane somewhere for fun (can’t remember where). The plane crashed and she and the pilot were the only survivors, killing her son and husband both. Oprah asked her how she didn’t get stuck in the pain, and didn’t get stuck in the grief and trauma of what she had been through. That’s what I often feel.. stuck. Very stuck. Stuck in the fact that this is not how it’s suppose to be. I somehow believed that if you were a Christian and you pray hard enough and you believe enough that life might not always be easy, but it will be ok, you will get through and God will bless you. But losing two sons and realizing I’m probably the carrier of an unknown, horrible genetic disease hasn’t been ok for me. I haven’t always felt that “blessed.” Like I’ve said, I wasn’t prepared for the turn life took. What this beautiful lady said, was so true. She tries to focus on what she was given instead of what was taken away. It doesn’t take away the pain…it’s not suppose to. She felt like me in that you can’t just throw clichés at people and expect them to just say, well alright, I’m ok. You have to experience the grief, you have to feel it. But in the end, you realize how blessed you’ve been along the way. You realize that nothing you can “do” can keep you from difficult times. No matter how hard you pray, no matter how good you are and no matter what you think you deserve. I believe that with all my heart and have a hard time with people who think otherwise. But I do believe that I have been given a good life. I wish that life had not taken the difficult turn for me. I will never get over what I went through in bringing the boys into the world, caring for them during their too short days here living 24/7 in the horrific hospital, and helping them leave this world, but I was so blessed to be able to be their mother and to have the opportunity to do all those things. I have no idea what is ahead for our family , but I’m glad that I’m not naïve enough to believe that if I pray hard enough and live right and follow God’s will, that I will be spared anymore heartache. That reality hit even more so last week as I had the scare with my dad.

It was so refreshing to watch those people yesterday who had endured so much and continue on living a life with joy, courage and that can be counted as good. My own mother is a true testament to that. Most of you do not know about her life growing up, but she would have been the perfect person to be one of Oprah’s guest yesterday. I can’t help but wonder sometimes why it seems our family has had more than it’s fair share of difficulties, but we’ve also had an abundance of blessings. It’s corny, but true, each day, each moment is a gift. Don’t let anyone leave your house each morning without hearing “I love you.” I’ve thought about those high school kids who were killed in the tornado yesterday and I wondered what kind of morning they had had that day. Was there mom stressed out and fussing at them right before they left because they couldn’t find their glasses or waited until the last second to tell you they need some money for this or that, or couldn’t find their shoes… or left every single article of clothing that had touched their body that week in the middle of the bedroom floor…or whatever little thing it took to send everyone into a hectic scramble (sounds familiar?). I hope that each of them were told they were loved and that they were able to say it back.

Thanks again for all your sweet notes and comments on the guestbook. I always receive such strength from your outpouring of love and support as well as the humor you share from your own lives. I hope you all have a happy, safe weekend.

Love, hope and courage
Carol

Friday, February 23, 2007 2:31 PM CST

I still can't believe it's been yet again another week. I am way behind this week but wanted to send a quick update as to our adventures this week and why I have been so behind in answering any emails and returning phone calls.

My dad seemed to have had a small stroke on Wed. He was fine that morning (had had a routine colonoscopy) and seemed a little usual droggy from the anestheisa (so we thought) but got better as the day went. That night, he out of the blue lost a lot of his memory. He knew who everyone was but was very confused, figity and somewhat agitated. My mom took him to the ER and he was better by the time they got there. I came on down the next day and they ran several, MRIs, CT scans etc. This morning I went with my mom and dad to the nuerologist to find out the results. Amazingly my dad's left caroited artery closed completely. Once it closes completely there is nothing they can do. However, he has suffered no permanent brain damage. His brain looked great in fact. Evidently the right artery in the neck took over and continued to the blood supply to the brain. We are so blessed that this is the way it ended up. Normally, the doctor explained, that when it shuts completely off you have a massive stroke. They are going to do more test on the right side and do everything they can to keep this one open and keep it monitored.

I'm back home and waiting on the girls to get home from school. I hope to get caught up soon. Thanks so for all your emails and sweet notes of encouragement recently. I have read and appreciated all of them, just have not had time to respond. Always appreciating your friendships.

Carol

Friday, February 16, 2007 9:07 AM CST

I can’t believe it has already been a week since I last updated. We’ve had an uneventful week for the most part. I’m sometimes still amazed that you would be interested in our lives. I know that it’s not too exciting to come here and read about us getting up, having breakfast, going here and there and all the other mundane moments. I go back and forth in my heart of how long I should keep this site going. I know our story is never really over, all of us continue our own stories everyday. It’s most always been more about me…putting my thoughts, feelings, fears frustrations out there. The support I received was a surprise and a huge bonus. I continue to assure you that there is nothing extraordinary about us, other than we’ve seemed to have had more than our fair share of difficulties in this life. I’ve always believed that how we handle what happens to us is ultimately more important than what happens to us. I feel that I have handled things better than I ever thought I could. Six years ago, if anyone had ever told me the pain that I would endure, I would have never thought that I could have survived. That is why I always tell people to never say that God has not allowed something to happen to them because He knows they couldn’t handle it. I just don’t believe that, if it were true, none of the heartache in my life would have happened. I have so far to go, but I am proud of the fact that I carry on everyday. I don’t always do it like I should and I don’t always say the right things or handle things like I know I should and in a way that would bring Glory to God and to the life I’ve been given. However, I’m trying. I feel like everyday I have to get up and dust myself off and try to keep going. It’s a life full of one step forward and 2-3 steps back, just as many of you experience daily as well.

I still need to breathe. I continue to feel as though I can not catch my breath. I’m consumed with heartache and a pain that I really feel physically as well as emotionally. Life really took a turn for me that I did not see coming. Everything has changed. I’m no longer certain of anything. I often feel that there is no one that truly understands exactly what we went through. I can’t even go back and re-read old journal entries without being completely overcome with grief and pain. It’s just too painful. Yet, I know there are people who’ve been through worse or who’ve also experienced a roller coaster ride of emotions in dealing with a sick child. None of it is every going to make sense. I have found that the best way for me to deal with it has been to be real. I could quote a lot of scriptures, accepted that there are so many going through worse, realize that God is in control and will see me through….and all the other things people constantly tell me. All of which are true, but I’ve never been able to put up a façade as I grieve. There are many times I want to lock all the doors, turn out all the lights, and sit in the corner and either scream or cry, or probably both. I’m so disappointed in life’s turn for me. It has tested my faith, my desire to keep going and sometimes even my desire to be around people. But if sharing my grief and what I’ve learned could help anyone, then I’m thrilled to be able to do that. I find myself only able to tell people that life is not always going to be good. It is not easy, not by any means, but you will make it. That is how I know that God is faithful. We will make it through this. The pain will ALWAYS be there, and for me, it’s never going to really be ok, and as much as many people would like, I’m NEVER going to get over it. I don’t even want to. I would do anything to have just one more minute with my sons, anything if I could just hold them again. But I try to remember that I do have one more minute with my daughters. I still have a hard time practicing what I preach in enjoying every moment and not sweating the small stuff. As much as I would love to be able to go back and have none of the heartache happen, I wouldn’t want to go back to the person I was before Reid and Randon.

Someone sent me an article (thank you Pam) that described some exact feelings I’ve had. I really never have questioned why me, I’ve always believed heart ache and hard times come to everybody. I know that I haven’t lived a life deserving of nothing but good. But with the boys, my questions and confusion have been that this is not how God designed creation. I don’t understand genetic defects and illnesses in children and how that fits into God’s perfect design. It has seemed so crazy that God’s perfect plan for creation would allow for my boys to only live 6 months and 2 months. Why would I go through all that I did to have boys live so briefly. What the mom in the article and what I too have felt is that my life here is only brief, but because the boys lived here so briefly, they are now going to get to live for eternity. I have to believe they were here briefly for a reason. I will truly be the mother of 5 for forever. I do believe that someday, when I get to be with the boys forever, I’ll be so glad that they were born and that they lived, even if it was way too brief.

The boys gave me freedom from the pressure of worrying about our lives and how successful we are, what kind of house we have or cars we drive or what other people think. I feel complete freedom from that…and that feels great. Now, family matters more. I now realize that often with people I meet everyday, there can be deep hurt inside that we may never know. I realize that as I’m out and about everyday and strangers make comments about how perfect our life may seem or assumptions about the size of our family. The best way for me to continue to deal with all of it and with life in general is to continue to just be real.

Wow, in absence of an eventful week, I sure had a lot to say. It’s time for Reese to wake up (she is a sleeper) and for me to do what I so encourage and go enjoy the moment.

Love, hope and courage
carol

Friday, February 9, 2007 7:46 AM CST

Two updates in two days, you know what that must mean..yes, I have some news.

We received a letter in the mail yesterday informing us we were found eligible for the study at NIH! They told us it would be four weeks before we would hear something, and it all happened in one week.

I have to go through the stack of consent and privacy forms and all that fun stuff and get it back and then we will find out from there what the next step is. Thank you for your prayers. I continue to just try and be cautiously optimistic. However, it feels so much better to at least feel like we are moving forward trying to find answers. It just goes to show you, you never know. I've been guilty of trying to be patient and wait on the doctors to help us find something, and the first thing that sounds hopeful, I found through the help, not of a doctor or Vanderbilt, but just a friend.
My mom told me over and over growing up.."the sqeeking wheel gets the oil." Always good advice as I now really see how sick of the squeek some can get!
Speaking of my parents, they are wonderful people...they could use some extra prayers right now as could all of my extended family (back to that when it rains it pours thought).

I will keep you posted on the study. Now for the stories you really want to know about.

The ear piercing story is not all that great, but always an adventure. Dale still was not thrilled with idea and it became one of those topics we just couldn't discuss any longer. She had friend who decided she would go with her and get hers done too. Riley is so squimish at the thought of anything medical...just like her dad. I've finally learned that they really cant help it (use to drive me crazy). For some reason we thought it best for her to go first. I even went the extra step and instead of taking her to the mall, we had it done an the doctors office by the doctor himself. She turns about 10 shades of pale. They do both sides at the same time, and it wasnt the pain that got her, just the thought. I thought she was going to pass out. She jerked and therefore they were not even...needed to do one side again. She doesnt think she can do it.....finally trys again (I'm imagining all the "I told you sos" coming from Dale). Again, she jerks and it's still not right. I think she is really going to pass out....and so does the doctor....he then says watching her is making him want to pass out. She comments that she needs some air, and he says he does too! So off they go getting air and sprite......all for an ear piercing. I really found it quite comical (more so now). Finally, somehow they get her back on the table and redo the one ear...it's still really not that even, but as we both screamed "Close Enough."
Her friend, by the way,did great. In Riley's defense, they said they have never seen such wide ear lobes.hmmmm (I'll add a picture soon)

My talented sister in law probably worked about 2 weeks on making Reese's JoJo circus cake. She did not have a pattern, just a picture off the internet that I showed her. She calls me the day of the party and says it will fit best in the back of my van. I go to pick it up on the way to the party and it is beautiful, perfect. I admit that I'm so impressed. However, I assured her that I was to nervous to transport it. We secure it in the car and secure everything around it...I'm still nervous, but she tells me how she has tranported big wedding cakes this way, just be careful with curves and dont' drive fast.
Well, my next stop is to pick up Riley from school. I get there to see her get into her usual ride a few cars ahead (she got confused on the plans). I'm trying to get out of the crazy car rider line and catch her...well you can imagine what happens next. I had to go around a curve which I must have taken too quicky. I hear something in the truck roll over, and then I hear every thing come tumbling over with it....right to the side where the cake was. At this point, I'm literally on the way to the party. What is a birthday party without a cake? I'm trying to think of who I could call to go to Wal Mart and get me another cake...but I had the perfect JoJO cake, you can't just get a JoJo cake at Walmart. I knew how hard she had worked on it, I truly shed a few tears over this cake. I'm not that mom that usually has the perfect party stuff...you know the cake, the napkins all the perfect little matching stuff, and for once I was so proud of the cake...I WAS like one of those moms.
I'm scared to even open my trunk, knowing it's going to be completely flattened. I'm amazed when I open it that it is not too bad. One area is chipped off a little and it's sort of collapsed but still usuable I think! Mindy meets me with all her "stuff" and basically works on it during the entire first hour of the party. We called it the "leaning cake of JoJO" She had worked so hard and it was SO cute. It turned out ok. I knew when she said she transports cakes all the time, that I should have reminder her that we are talking about me....the one who if there is a 1hance of anything happening, then it will happen (except the lottery). It still tasted great and I don't think a single child noticed it was leaning.
If I wrote a book, nobody would believe it.

Dont foget our special friend, and Reese's brother Isaiah (according to her) has a big surgery on Monday. (ky/isaiah)
love, hope and courage
Carol

Cool Slideshows

Wednesday, February 7, 2007 1:21 PM CST

Cool Slideshows

For the most part, all are on the mend around here. Dale and I seemed to escape with just some minor inconveniences. Of course, he has been gone the past two weeks, so its been much easier for him to escape the germs than me. It was actually kind of nice with all of them having the same thing. I wasn’t worried about keeping everyone separated. I know many of you have been sick or had sick ones at your house too. I would have personally liked to have seen a few more “flu” days from school.

It’s like I was discussing with a friend the other day, when you’ve dealt with chemo and neutropenia (no immune system) and ICU and cancer, the flu is really no big deal. However, on the other hand, you also have this little spot in you that secretly fears, what if it’s something else, or what if they get that really bad case, and all the other things that go through your mind. I could never really begin to describe the fear of losing another child that haunts me daily.

We have continued to be extremely busy. Seems like we have several things going on. Riley is actually thrilled right now. Basketball is over and she gets to come home everyday after school…she was just telling me how wonderful it feels to have nothing going on right now. Of course, she only has about another week or two until soccer starts back, but definitely enjoying the break.

As crazy as it seems, I really enjoyed her time home with me when she was sick. She felt miserable and I pretty much put everything on hold just to hang with her. One of our favorite things to do is to snuggle in my bed and watch TLC….especially “What Not to Wear.” It was a tradition we started a couple of summers ago when she had strep throat on the fourth of July. We watched a “what not to wear” marathon and made the best of things. So we got to do that as well as add, “Ten Years Younger (a new favorite of ours). Sadly, right after that, came “A Baby Story.” I just couldn’t bear to watch it.

I think that is maybe why I’ve been a little extra gloomy this week, I miss them being here, even if they were sick. I sent both the big ones back to school and seems we had to get back in the usual rat race. Lately it has been a bit harder to get Randon and last year’s pregnancy off my mind. Many days I wake up and still can not believe that it all really happened. I just had so many hopes for Randon and all of our lives as we prepared for this new addition. Nothing seems as if it’s the way it’s suppose to be. My life without those boys just does not seem right at all, and some days I have a much harder time accepting it than others.

I do have one area that could use some prayers. I ran into a friend this week who has also lost a child to cancer recently. We only had a minute to talk but she was sharing with me all the “other” difficulties in her life right now. I don’t know why, but I told her it often seems like when it rains, it pours. In 2002 after Reid died, it seemed we could not get a break. To mention a few, my sisters house burned to the ground losing everything, Dale’s mom continued being ill (we just had the 3 year anniversary of her passing), my other sister going through some difficult days, well, you get the picture. She said something to me that I too have often felt and thought. She told me that she had been afraid to pray lately. I knew exactly what she meant. When you’ve invested so much heart and life into praying for something and felt the power of those prayers surround you, yet the outcome being so opposite, I couldn’t help but wonder if I had done it wrong. That is exactly what she is experiencing. Maybe we are doing it wrong, so we are scared to continue like we had been doing.

Don’t get me wrong, I do still believe in prayer, but I’m the first to admit that its very different for me and I definitely do not understand it nor have many answers. I will very seldom ask someone to pray for me or for any situation. I admit I have a hard time with “prayer request” time at church or anywhere really. It is just something I have to work through. I try not to let if affect the way we pray at home or with our children (Reagan Miller will not let you take one bite or go to bed around here without a prayer). So I’m aware that I may not always be the example of a praying mother right now. OK, to try and get back to where I was, I very cautiously ask for prayer for what I’m about to explain.

My friend Holly made me aware of a place at NIH that studies inherited bone marrow failure. There is one particular study about bone marrow failure diseases and the risk of developing cancer. I’m not sure it is something we will qualify for or would help. However, I finally got the nerve to contact them. They were great. I knew my motivation was to learn something about the boys’ illness and how it is passed down…not sure it would meet their study criteria. I was pleasantly surprised when I got the first email back and they made a statement that they would love to help our family find some answers if possible. I then spent about an hour on the phone with the referral nurse giving them all the history of the boys.

I was told that we would learn if we are eligible for the study in the next 4 weeks. In the absence of so much, it would be such a blessing to me if we could find some help and figure out what exactly the boys had and how it was passed down. So much of my everyday joy is zapped worrying about my girls’ future. I’ve buried 2 children, I know that we have time and that “worrying” wont help, but I can’t imagine another person who would have buried 2 children to a horrible disease who couldn’t help but worry about it everyday. So I think that this is an area of our life that could really use some prayer right now. I so much want to continue to hold on to the hope that we have in prayer.

Right now, I’m just struggling missing Randon. I had this incredible baby and my arms contine to just literally crave to scoop him up, hold him, feed him, care for him and just love him. I’m dealing with feeling so incredibly cheated right now. I am so thankful to have Reese, but for 9 months, I prepared myself to be taking care of two little ones (in addition to my 2 big ones). It still creates situations daily where I feel so out of place and that someone is so missing! I think with grief that you have to deal with that fine line between feeling alone and wanting to be left alone, the fear that I will never be able to function normally again, the fear of being thought of as a constant complainer. I have to remember that beyond my pain, there is a whole world out there. I count my blessings. I continue to seek a life that can be counted as good. Words like hope, happiness and joy have to contine to have meaning and purpose. I try to no longer ask for a life without grief but for a heart that can endure.

I have gone on too long to tell you at least 2 interesting stories in our lives. One being the ear piercing story and the other being Reese’s birthday cake story. I always read your sweet notes on the guestbook and love knowing what is going on in your families. So, when so many of you commented on the cake…well, of course there is a story. No, I did not make it (my talented sister in law did). I promise to tell you next time, I will try and update again soon, perhaps by the end of the week.

Much love, hope and courage
Carol

Friday, February 2, 2007 1:26 PM CST

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The week was starting off fun, but has ended kind of yucky. Reese had her birthday party last Friday. As noted above, it was a JoJo circus theme. She had a great time. Riley, still just wanted to keep everything on hold and considering how this week has gone for her, that has been a good thing.

Riley started not feeling well Monday. I picked her up early from school on Tues and things just got sicker from there. Of course, Dale left Monday and is gone until tonight so you know what happened, all three have now tested positive for the flu. Riley is definitely the sickest and not making much progress.

We finally got the much anticipated snow..but a little later than hoped. School was called off today for illness before the snow came. I feel like the house right now is the real JoJo circus. I will update soon, but for now, I’m going to continue spraying the place down and tending to the demanding little sick people around here.

Hope you all are staying well!

Thursday, January 25, 2007 7:10 AM CST

I always dreamed that one of my kids would be a doctor. A doctor that is so compassionate for kids and discovers an easy cure to cancer and many other amazing discoveries. Well, since Riley literally turns green when she hears the word “needle” or “blood” I’m quite confident that my dream will not be lived out through her. Of course like most 13 (I’m still getting use to it) year olds she has had no idea what she might want to do when she grows up. However, the other day, she seemed to have a little revelation. She told me she wanted ED Hills job (she is the former female anchor on Fox News morning show Fox and Friends). She wanted to be a TV or talk show host. I did the appropriate response thing and encouraged her and told her I thought she would be terrific at it…but she would have to let go of some of the shyness. Amazingly, a few days later, she was asked to emcee this year’s Bowling Green Youth Recognition Ceremony (with Gene Burk, our local news anchor). She had been recognized at this event last year and they wanted to include her this year. I might be a little biased, but I think she did a great job. I know she enjoyed it and who knows, maybe ED Hill might have a little competition to worry about. I was so sad that I forgot my camera but thankfully I received an email with this picture from a friend who was there with her daughter!

We have been non stop around here since all the birthday madness. Reese has been somewhat confused. I think she will start thinking that birthdays last forever. They had great birthdays. Thank you all so much for all your sweet notes and kind words to them. You really helped make their days extra special. Riley has wanted to have a party but can’t make up her mind. She wanted to have a “coed” one this year. The only problem (other than her dad fainting) was that she wanted to have it in our backyard. I reminder her that it is January and she just simply thinks we could have a big bonfire..right here in the neighborhood. We’ve tried to steer her into something smaller and maybe a little more intimate, but so far, she’s afraid if she can’t invite everybody she might hurt somebody’s feelings and so we’ve just put party planning on hold for now. Please share any creative ideas you might have for freezing January birthdays.

It’s been hectic but good I guess for the sadness. However, every night I still have to lay my head on that pillow and it all comes rushing back. Dale and I have literally been going different directions. He seems to be extra busy at work so from 3 oclock on everyday it’s like the biggest mad rush I’ve ever known. We have a new goal of trying to get everyone to bed earlier (including myself) but so far we have not been too successful. There hasn’t been much time to focus on the sadness, but even behind the smiles and behind the busyness, it’s still there. The pain in my heart and the ache of my empty arms are never too far away.

Dale and I did get to attend our first ever Hockey game (Nashville Predators of course) this weekend. Our friend and doctor from Vanderbilt, Dr. Dermody and his wife took us and we had a great time. Oddly, we ran into one of our nurses at the restaurant -sorry, Jennifer, you did miss a great game- (it was sold out). It was exciting and something I think I would definitely like to do again. We enjoyed our time and believe it or not, didn’t really talk about leukemia, or genetics or all the usual medical things our conversations with him normally entail.

As with most of you all, we just have a lot of “stuff” going on here. Normal stresses of getting everybody where they need to be while toting along the 3 year old who just now seems to be going through the terrible twos on top of the continual emptiness and I think shock of everything that still goes on in my heart. We still try and take it one day at a time as much as we can. I continue to be thankful for my family and friends and all the support we have in our lives! There is so much good, but it’s learning how to be really happy again that seems to be the hardest. My thoughts, opinions, and feelings on a lot of topics and issues are so different now and trying to find the “changed’ me’s place in this world is a daily struggle.

Thanks for all your friendships.
Oh, yes, I forgot to tell you all that Riley did get her ears pierced. That is definitely a story for next time….and I do have pictures.

Much love, hope and courage
Carol

Thursday, January 18, 2007 6:05 AM CST

HAPPY BIRTHDAY REESE! WE CONTINUE ON OUR 48 HOUR BIRTHDAY MADNESS. Thanks to all of you for your sweet notes to Riley yesterday. She read them ALL and had a very special day. She was excited to find another friend out there who shared her birthday! I still can't believe I could have a teenager, but it's starting to sink in

Since digital cameras have been around since miss Reese was born, her slide show was much easier! (you may have to click on the pages to get them to move) I couldn't believe I actually had so many pictures of her by herself afterall! Dale and I have realized that had we known Reid's condition was genetic, we probably would have never had Reese. I'm so glad we have her and can not begin to imagine life without her. I heard her tell someone a couple of days ago, "my mommy doesn't want me to be big." She is so right!!!

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January 17TH
HAPPY BIRTHDAY RILEY!
(DO YOU REMEMBER THE ICE STORM 13 YEARS AGO?)

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Tuesday, January 16, 2007 8:32 PM CST

What can I say on a day like today other than Happy Birthday Riley. I'm forever blessed for being her mother. She is definitely one of my miracles!

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she lovely
Isnt she wonderfull
Isnt she precious
Less than one minute old
I never thought through love wed be
Making one as lovely as she
But isnt she lovely made from love

Isnt she pretty
Truly the angels best
Boy, Im so happy
We have been heaven blessed
I cant believe what God has done
Through us hes given life to one
But isnt she lovely made from love

Isnt she lovely
Life and love are the same

Wednesday, January 10, 2007 5:34 PM CST

Reese: (protesting, crying) “I can’t reach it!”
Me: (walking in finding her climbing the bathroom counter) What are you doing?
Reese: I CAN’T REACH THE SCISSORS (still crying)
Me: You don’t need the scissors. They are for cutting.
Reese: (still protesting) I NEED THE SCISSORS!!
Me: They are not a toy, they are for cutting. (trying to stay calm)
Reese: I NEED TO CUT SOMETHING!!!
Me: What do you need to cut!!????????
Reese: My hair!!

I then realized the reason the scissors were even in the bathroom is that until last week, I had not had a haircut since Randon, and decided I could give myself a little trim in the mean time (big mistake). I had no idea she had even been watching me but she definitely thought she knew what those scissors were for.

We have had a fairly good week as far as things go on my personal “how I am doing now scale.” It can change at anytime, but for the most part things have been good.

We stay on the go which is hard because I prefer to just stay home. Facing and dealing with the world is so much harder than just enjoying being home. Every morning when the big girls leave for school, it’s always a little let down. However, not too long after, little Reese wakes up and the remainder of the day flys by.

Next week, we have 2 birthdays. Riley will be 13 on the 17th and Reese will be 3 on the 18th. I went to the hospital to have Reese on the 17th (cancelling Riley’s slumber party…Reese wasn’t due until 2/03 and I had never gone early) but she was born after midnight, so they are 10 years and one day apart! My sister also has a birthday on the 15th, but I wont reveal her age. All are excited (maybe not my OLDER sister). I’ve dreaded the teenage years for awhile, but here they are.

Middle school has been an adjustment, but over all the experience has been ok. I tend to overact…..I know you find that so hard to believe…Riley handles things much better than I do and I’ve been very proud of her. I remember middle school from my days….I didn’t really like it then, and not so sure I like it now, but like it or not, it’s here. My sister encouraged me to read the best book, “Queen Bees and Wannabees…..excellent book I highly recommend for all moms of teenage girls. Whew. ..! I don’t like Riley growing up, but I sure do enjoy her. She seems not to be too embarrassed of me yet and we still have a lot of fun doing things together.

Dale has not let her have her ear’s pierced yet. I told him to get over it, I am taking her for her birthday!! I think it’s time. When it comes to the girls, he’s even more of an over reactor than I am. (we are like Steve Martin in Father of the Bride…we come from a long line of over reactors!)

Vanderbilt called again this week to go over more of the autopsy. We didn’t really learn anything new other than I guess the results are final. They sent some things off for second opinions but I don’t think learned anything more except that Randon did have a serious infection at the time of his death. Reid had scar tissue in his bone marrow but no leukemia, Randon had the leukemia, but no real scar tissue. They presented differently but to similar not to be related. They always told us that Reid’s disease fit so much in the big picture of leukemia. Certainly babies are born with leukemia, although rare, but not usually 2 babies in one family, which is why we know there has to be a hereditary link.

I often forget as I pound away on this keyboard just how many people might be reading. I realized last week from the emails and phone calls wanting to know who at my church had offended me, that I often don’t get across exactly what I am trying to say. I think what I was just trying to say is that I’m having a hard time and I often direct my feelings on things that aren’t truly the problem. I have a lot of anger and yes, as much as I hate to admit it, bitterness, just trapped inside me desparately wanting to come out and attack someone….sometimes anyone….maybe even the innocent lady at Wal-Mart who tells me to have a nice day. Have a nice day??? I often want to scream!! Lady, you have no idea how hard it is for me to have a nice day!! I felt better when I read something that a friend who recently loss her son and wrote…she wanted to smack the stranger who said Happy New Year to her…she just buried her son, how was she to have a happy new year.

Yes, my emotions run rampant all over the spectrum. I’m reading a great book right now, actually I’m reading 3 great books… that’s how crazy I am. I would rather have 3 different books going that to sit down and finish one before starting another. But, you know how you will read something that simply just expresses what you’ve been trying to say but can never get out. Well, in one of the books I had one of those yes! moments when it talks about pain and suffering. It goes on and on about pain and even describes how dangerous it is for people who have disorders that do not allow them to have pain as pain is mostly a protective response. But the author makes the point that without pain and without suffering…the joy wouldn’t be so good. It’s as if my key to happiness is intensified by knowing pain. Pain is one of natures best teachers. How else do we know not to touch a hot stove. Because I know loss, because I know life in a hospital and intensive care unit, because I know the suffering of being separated from your family and facing your worse fears of two childen being pronounced dead in your arms….because I really know these things, the good is so much better. The days without sickness, the days we are just having a meal together or watching a movie, or driving around looking at Christmas lights, the days that nobody is sick and we play a game before we all go to bed..the days that we are just here, doing the laundry and paying the bills…these days are truly incredible…and the days that are even better than those, like sharing a beautiful rainbow or achieving something you really wanted, are just a big bonus.

I am full of pain…and it really hurts…the word grief just doesn’t do the pain justice. But at the same time, I am so happy. I am so grateful for so much. That is why I can get out of bed and why I don’t give in to the sadness.. I have moments where I do give into it, but if you ever wonder what it is that keeps people going after difficult times, I think that has so much to do with it.

A friend and I were discussing an issue the other day where someone felt they might have a problem with compassion, not thinking they were a very compassionate person (probably because they think a strong faith is all you need) Immediately I thought, then they don’t know suffering. You really understand compassion, you really feel it, when you’ve felt the suffering and heart ache. Most of us know compassion because we know pain, even though our pains may be different. I guess that is why it’s almost impossible for me to watch the news now. The pain is indescribable everytime I hear about a child’s death…I can’t help but think of the suffering parents. I still don’t always act on my compassion like I should, but it is real.

I think that once again summarizes why happiness can not be found in things..not in how much money you have or what kind of house or even who you are married to or how great your children are. Happiness comes almost unexpectedly, a result of something you’ve invested yourself in..an investment that probably caused a lot of pain. I’m reminded, as odd as it may sound, of all the happiness that has come from Reid and Randon. I discovered something else the other day. I can’t take credit for it because again it was in one of the three books I’m reading.. but, it pointed out that with Job he was given double all he had lost..14,000 sheep to replace the 7,000; 6,000 camels to replace 3,000 and a thousand oxen to replace 500. There is one exception to this…Job had 7 sons and 3 daughters. In the restoration he got 7 sevens and 3 daughters, not 14 and 6- but the same. Could it be the hint to the eternal perspective…that he did indeed receive double…ten new children to go with the 10 he would one day be reunited with. (from Where is God when it Hurts) That thought brought a true smile to my face.

(someone emailed me last week about this great Martina McBride song they had heard. Well, I have not been able to find it or hear it..teenager=radio not on country channel much...but I finally found it!)
Not sure who wrote the song but I'm sure it's from Mother Theresa. Here is the version reportedly written on the wall of Mother Theresa's childrens home in Calcutta. It is believed she adapted the verses from a composition originally written by Kent Keith (The Paradoxial commandments, I think).

People are often unreasonable, irrational, and self-centered. Forgive them anyway.


If you are kind, people may accuse you of selfish, ulterior motives. Be kind anyway.


If you are successful, you will win some unfaithful friends and some genuine enemies. Succeed anyway.

If you are honest and sincere people may deceive you. Be honest and sincere anyway.

What you spend years creating, others could destroy overnight. Create anyway.

If you find serenity and happiness, some may be jealous. Be happy anyway.

The good you do today, will often be forgotten. Do good anyway.

Give the best you have, and it will never be enough. Give your best anyway.

In the final analysis, it is between you and God. It was never between you and them anyway.




Much love,hope and happiness to all of you
Carol

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Wednesday, January 3, 2007 0:43 AM CST

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I know that Reese looks so precious in those pictures, but don’t let it fool you. Let me explain it this way. When we left the wedding and were in the car driving home, Reagan starts bawling. We immediately ask her what is wrong and she sobs, “Reese wrecked the whole wedding!” Well, maybe wrecked is a strong word, but it was pretty bad. I expected her not to stand still down there, and I could even handle it ok when she took her shoe off and threw the flower girl basket, but when she started making this spitting/raspberry noise during the vows, well, I’ve never wanted to choke anyone more. Otherwise, it was one of the most beautiful weddings I had seen. The colors were gorgeous and the church was just decorated beautiful with all the trees and lights. The bride and her family were very gracious, but Dale and I continue to be mortified.

What a let down. Christmas, the wedding, New Years- all over. Clark got everything down…but the mess…..does anybody know what I’m talking about? I don’t know how well ever get things looking back to normal. We have lots of piles to go through.

As for us, we have no big resolutions for the New Year. I don’t think I’ve ever really done the resolution thing. Things right now remind me so much of how things were around here 5 years ago. So many raw emotions still. Moments of being incredibly happy and moments of feeling incredibly out of control. Trying to learn once again how not to let the grief control my thoughts and emotions. Randon continues to be the first thing on my mind every morning and the reason it’s so hard to get to sleep at night. I think of him and relive everything constantly. I have had some relief lately in reading and talking with various people about their grief and have found a lot of comfort in realizing I’m often not alone in the crazy feelings I have.

One thing that surprised me to be a common theme amongst fellow grievers….church is one of the hardest places to go. Why? For me, so many reasons. Is it that you feel like you are stuck worshipping with those who walk around with the air of holiness that says we are so blessed because we are so good; therefore (like Job’s bunch of comforters) you must have done something to deserve that, is it that I’m stuck worshipping with ones who serve on every committee and participate in all the foreign missions but can’t even acknowledge a fellow member’s loss in any way, shape for form, or is that so much of church is focused on the family, and so much of my family is missing. I think I’ve thought it was all these things…but I’m learning to seek the truth of my hardened heart. Really, I know in my heart and at some point all will realize that it is a good thing we are not truly blessed based on our goodness…. I mean who could be more perfect than John the Baptist, yet look how things ended for him…look at the lives of all of those who were closest to God. Outside of Jabez, I think all had their fair share of troubles. And I’ve started asking myself lately (with Dale’s encouragement) why it matters so much to me that other’s acknowledge our loss…it should not matter. I think if you could take all the good that has been done for us…all the ways our loss was acknowledged and Randon’s memory honored, how people reached out to us and provided us so much comfort….if you could some how take all that and package it in some way where you could give others just a taste of what it’s like….they would be standing in the longest line to be a part of that blessing. But I realize, until you’ve experienced it, you’ll never really know and I have to change my expectations of others or I will continue to let the disappointment consume me. Why is it that so many of us who’ve been comforted and treated so well by so many, still think of those who were silent during our circumstances? It has to be when you are overcome by the kindness of complete strangers is does make the absence of those you know more evident. However, that is something I have to let go. And yes, so much of our family is missing, but I was given the best advice when we married. Children do not complete your marriage, nor your family….children only add to it. You were complete before you had children. If you think of your children as only completing you, you are setting yourself up for disappointment. Leanring to accept our family now the way it is can be so hard becuase I feel it's not the way it's suppose to be. But again, I'm only looking at it from my limited perspective.

We were shown so much love, from complete strangers to many who I've only grown closer to. So why do I even let the very, very few who didn't meet my expectations of how they shoud have responded even continue to cross my mind. It's all about looking past the hurt and fully understanding that most often lack of any acknowledgement of your loss and pain really only comes from people who just can't possibly understand how ackward it seems when they think it's best not to mention this huge event that happened in your life. In my heart, I know that they really do care. I need to accept that everyone expresses it differently and some are just more naturally gifted "carers" than others. I think a total package of disappointment comes with grief.

So what exactly is it? I think it must be the changes that occur in your faith that come from grief. All of those things above are perhaps part of it…part of how our thoughts and the things we’ve always believed are challenged and why sometimes I can be so unreasonable in my thoughts. Losing a child will question how you feel about the power of prayer and the Sunday school answers you’ve heard you’re entire life- to trust in God and everything will be ok. It definitely changes your definition of ok. How do you not feel that it’s in some way trivial when others are asking for prayers for ear infections and colds when you’ve lived in the world of childhood cancer and pediatric intensive care units? I find myself at times as though I’m someone worshipping in God’s house for the very first time. I’m no longer sure of what I believe or what I thought I believed. I feel like a total outsider, yet I still want to belong. Knowing I have to return to the "normal" world but trying how to figure out how to do that when you feel so completely different and forever changed.

I think that my friend Nancy Guthrie described it best, and it's really not "church": It's one thing to go to church, it is another thing to worship. Now it's about setting aside my feelings of disappointment, confusion and anger, and learning to worship again. I expect so much from church and the people involved, while I should focus on my heart.

I’ve always been completely honest about my grief and feelings in this journey. I hope you don’t interpret my thoughts and feelings of lack of faith or even just a bad attitude. It often feels that way, but I believe it can be healthy to question your beliefs. I think it can be healthy to admit I’m not always strong and a pillar of faith. It’s different for me now, especially when I talk about hope. My faith is the only hope I have. Someday we’ll know….I’ve accepted I wont have all the answers here, none of us do, but I do believe that someday we will know why Samson loved Deliliah. (Reagan definitely wonders abou that often).

So much more I could vent and share, but I realize I’m getting a little winded. I think I could spend a lot of updates on my feelings for the new year. I couldn’t be happier to see 2006 go, definitely not a good year for me. I was so sick the first 7 months, and consumed with grief and heartache the last 5. I sincerely pray for heart that learns to forgive, love and beat again in 2007. I pray to have a heart that will continue to seek a life that can be counted as good. And as I’ve been encouraged by Kylie Jae foundation, a life that continually seeks to pay it forward and be part of grateful giving. I am so blessed- beyond what I deserve-that I know.

Again, thank you for caring for us. And Robin, you will always be a princess in my book

Love, hope, courage for a new year
Carol

SOMEDAY WE'LL KNOW (from a Walk to Remember..like Gail, my favorite tear jerker)

90 miles outside chicago
Can't stop driving
I don't know why
So many questions
I need an answer
Two years later
You're still on my mind
Whatever happened to Emilia Earhart
Who holds the stars up in the sky
Is true love once in a lifetime
Did the captain of the titanic cry

Chorus:

Someday we'll know
If love can move a mountain
Someday we'll know
Why the sky is blue
Someday we'll know
Why I wasn't meant for you

Does anybody know the way to atlantis
Or what the wind says when she cries
I'm speeding by the place where I met you
For the 97th time tonight

(chorus)

Someday we'll know
Why Samson loved Delilah
One day I'll go
Dancing on the moon
Someday you'll know
That I was the one for you

I bought a ticket to the end of the rainbow
I watched the stars crash in the sea
If I could ask God just one question
Why aren't you here with me?

(chorus)

Someday we'll know
Why sampson loved delilah
One day I'll go
Dancing on the moon
Someday you'll know
That I was the one for you

Thursday, December 28, 2006 12:26 AM CST

I think we had a great Christmas. We were able to focus on the good and keep the sadness in the back burner as much as possible. It‘s always a little difficult as a couple of boys were definitely missing, but somehow, we kept their spirit with us and had some special ways to include them.

It continues to be a hectic time right now. All three girls are in our friend and babysitter Georgeanna’s wedding Saturday (Reese flower girl and big girls junior bridesmaids) so we have many activities going on to get ready for that. Just pray Reese cooperates. We are also going to Nashville tonight to see the Rockettes, so the excitement continues.

Rather than share al l the details of our Christmas, I figure pictures speak lounder than words. I really enjoyed Christmas Eve being on a Sunday. We did get to get some family pictures with everyone dressed decent this year. I think we all remember the big eyes and smiles on Christmas morning more than anything. I hope all of you had as perfect a Christmas as possible. Please keep our caringbridge friends, the Franz family in your prayers (caringbridge.org/visit/zacharyfrantz). I was so saddened to come home to an email Tuesday morning that Zach had passed away Christmas night. So sad. Christa has been such a friend to me since Randon’s birth.

As always, we have enjoyed all the notes and Christmas cards from you all. Please know how much we continue to appreciate all the kindness that has been shown to us, especially during the holidays. We always love hearing from you. We look forward to the new year ahead and pray for an abundance of blessing and miracles for all of us in 2007.

Happy New Year to all of you!! We pray for plenty of happiness and health. Hopefully, I will have some pretty wedding pictures to share soon. Please have a safe and happy New Years Eve and Day!

There was a scavenger hunt to the out garage for the huge basketball goal (not sure if that was for Dale or the girls) and doll house suprises! The outside picture is the girls feeding the reindeer of course!!


Much love, hope and courage
Carol and family
























(now we get to see how much fun Clark has taking it all down)

Tuesday, December 19, 2006 9:21 AM CST

Somehow, everyone is still asleep right now. I decided I would try to send a quick (never happens) update while all is quiet around here.

School is out and we hope to make some progress around here. Right now, my den floor is the Miller wrapping headquarters and there is no room for anything else. I hope to make some type of path today, get all the Christmas cards out, and get this place picked up (big chuckle).

I want to thank everyone for making last week so much more bearable. The notes on the guestbook, the emails, cards, poinsettias, Christmas flowers and arrangement, meals and most of all just the faithful friendships that we received that day were so appreciated. Thanks so much for Tanners mom for sending the darling “cars” to Vandy in Reid’s memory. What a blessing! I am so incredibly touched and encouraged by such gifts for us. Some of Reagan's friends sent us darling picutures of cupcakes and "party" they had for Reid. I was once again reminded of the blessings and gift of friendships I have in my life. I’m truly grateful. It was so healing to be able to celebrate Reid’s birthday in a way with so many. I loved putting his slide show together. Another reminder of his beauty, sweetness and innocence. I’m so grateful for the quality time I had with him. We no doubt had a special bond and I love that baby so incredibly much. You can’t spend everyday of your life for 6 months caring for someone and then just blocking it out that he ever existed. I’m so grateful that caringbridge has allowed me a way to celebrate his life and what he meant to me. I’ve come so far recently in letting go of those who just aren’t comfortable around me. I realize in the big picture, that they are so few in number. I feel I’ve really made some progress in dealing with those awkward times and people. I’m not sure if it’s necessarily the correct way, but for now, I’ve just been able to let some friendships and acquaintances go. I choose to surround myself with those who embrace me and embrace the heartache I’ve endured. There are so many who are willing to let me grieve at my own pace and to accept who I am and where I am in this journey. So many are willing to acknowledge that we have endured some traumatic experiences that are not made all better by refusing to mention it to me or reassuring me that my boys are just fine in heaven, so all must be well here.

I desire not to be the type of person that is just so miserable to be around. Happiness is a choice that I have to make, one day at a time. I don’t always make the appropriate choices in how I handle the next moment or the next difficult time, but I continue to know that grief is a process full of steps forward and steps back. I do not want others to be uncomfortable around me. There are many that feel they have to hide their babies from me and go out of their way to avoid us. Yes, babies are hard for me in many ways. Yet, I don’t begrudge others. I think what they don’t understand is that I don’t want their babies, I want mine. It is easier not to be around infants often, but I still wish there were some who would not go out of their way to avoid me. It’s another fine line that I don’t even understand myself between feeling someone is being insensitive to our loss and yet feeling completely avoided. The truth is there are no easy answers and depending on how I’m doing at the moment, usually determines how I handle a situation. Never really knowing myself how prepared I am for the day. We’ve been treated with so much kindness and love that I hope I can focus on all the good that surrounds us when my unruly emotions want to take over.

It’s a difficult time no doubt. Someone is definitely missing this Christmas. Ironically, I knew last year on Christmas day that there would be another stocking on the mantle this year. I really never imagined the heartache we would once again endure. We never really know what a year will hold for us. I’m even more aware, that who knows where we could find ourselves this time next year. This is the best and worse Christmas for us all in one. It’s an honor and joy to help prepare our family for Christmas. I’m so thankful for each person in my life and so much more keenly aware of what a miracle it all is. Focusing on the miracle and not the heartache is our goal right now.

We did get some news last week from Randon’s autopsy. We still don’t have many details and all information is not back, but we now know that Randon actually had leukemia (AML). Usually men in their 60’s develop mylofibrosis right before they develop leukemia. It seems my boys are the first infants to have this disease, and Randon had a much more aggressive form than Reid. I was just told that they are sending a lot of stuff off for second opinions and that the plan was still for all of us to get together in January hopefully to go over everything with us. Dr. Shankar (Mrs., not Mr.) did not feel that they would find anything from the autopsy that would give us more information on how this disease is passed down. We are just hoping that since this perhaps can officially be placed in the childhood cancer category, more research will be available.

Not sure if we will have a chance to update more before Christmas, but I know you believe me when I say I will have plenty of new pictures to share!!

We sincerely wish all of you a very Merry Christmas. I continue to pray for a miracle for all of us daily. Don’t forget to stop and notice all the miracles around you. Take advantage of the giving season to reach out to someone and give yourself the best Christmas ever. If you’re still looking for ideas of how to help others, I would also recommend the Kaylen foundation. You can go to kaylenfoundation.org to find out more.

I have to try and quickly share this story. One day at Vandy when I pretty much was coming to terms that my days with Randon were limited, I was incredibly angry. I was literally just furious thinking NOBODY loses two children. In addition, as crazy as it may sound, my feet were freezing!!!! I was miserable cold (Vandy is a freezer) and all I had on were sandals. Well, about that time a lady came in with this big tote bucket and said this is from the Kaylen foundation. Inside the tote were socks!!! It was the most perfect gift at the moment (I cant describe how cold I was). The tote was full of all kind of little things that were needed (new toothbrush, socks, shampoo, etc.) Also in there was brochure about the Kaylen foundation. And as I’m still just stewing in anger, I’m reading about Carissa Burr, a mom who lost not one but two beautiful children (Kaylen and Tallent) at Vandy. Right at the moment when I think that the despair and heartache of losing two children to this horrible disease will consume me, I read about Carissa. Kaylen and Tallent were her only children and not only did she start this foundation to help others, but she herself goes up to ICU and finds out about the needs and who needs help. It blows me away and in all my doubt and confusion I can not deny the timing of me discovering the Kaylen foundation.
So, please visit the website and know what a great ministry it is. Carissa and I have been trying to get together and hopefully that is going to work out soon! I don’t think she has any idea of what seemed to be a small gesture of help, inspired and encouraged me in a time when I felt that I was at the lowest point.

I’ve officially written a book. Thanks for sticking with me.
Once again, go out there and make sure you have a Merry Christmas!

Love, hope and courage
Carol and family

Thursday, December 14, 2006 6:56 AM CST

HAPPY BIRTHDAY REID!!!

Cool Slideshows

(Thanks for sharing this with us)
REMEMBERING
by Elizabeth Dent

Go ahead and mention my child.
The one that died, you know.

Don't worry about hurting me further.

The depth of my pain doesn't show.

Don't worry about making me cry.

I'm already crying inside.

Help me to heal by releasing

The tears that I try to hide.

I'm hurt when you just keep silent,

Pretending he didn't exist.

I would rather you mention my child,

Knowing that he has been missed.

You asked me how I was doing.

I say "pretty good" or "fine".

But healing is something ongoing.

I feel it will take a lifetime.

Monday, December 11, 2006 9:33 AM CST

Cool Slideshows

It’s been a tough, tough week. A few days ago, Riley and one of her friends asks me to take their picture before their basketball game. They were silly in every one of them and seemed to be having so much fun. They acted bored and disturbed in every picture, but were just dyeing for me to keep taking them (big sigh, middle school girls). Yesterday, I asked her why that was so fun, and she just assured me that it was. She told me I should try it. Since I was in dire need of some fun yesterday (very hard weekend). I said, ok, show me what is so fun. So the above pictures are our results. I mainly couldn’t keep from cracking up. Reese would not take the hood off, get a toothbrush out of her mouth or put on any pants. I tried to act like she and her friends, but she just told me that I didn’t understand. I have no idea what the peace sign is all about, I only remember it from when I was very little. We did have some fun taking the pictures. Dale, as you can see, had no part in it.

Last night, we also had our own candle lighting at home for remembering all the children who have past away and continue to let their lights shine. Dale fixed it where we each lit one for Reid and one for Randon. We tried to make it just a fun, special time rather than so sad. I was at my limit of sadness.

I appreciate all your prayers and support for my friend Joni. Larry Dean Smith’s service was beautiful, but I know too well how the hard part really starts now. Thank you for continuing to remember Joni and precious Kendall as they now have to adjust to a new normal and life without their wonderful husband and father.

I plan to stay busy this week. Reid’s birthday of course is Thursday. Five years ago does not seem remotely possible. I remember the details like it was yesterday. Last year we started the tradition of taking what we would have spent on his birthday, and using it for someone/something else. This year we gave it to the Family Enrichment Center where I’m very proud to serve on the board. I think it’s a fitting tribute to him and I’m glad we have this new tradition.

I continue to appreciate all your support and encouragement. I’ve had some extra difficult days. I’ve accepted that I don’t have to be so incredibly strong and that grief is not an indication of lack of faith. I have sought out some more help and I appreciate all the support I’ve received. I also wanted to explain further why I was so upset about the test results. We know that because the boys both have it, it has to be something genetic. They just can’t find the gene/chromosome that it is on. If they do not find it, we will not know if the girls are carriers. I know…..everyone keeps telling me that we have a while until the girls will be having children and technology can do so much….but please understand that in my shoes, I know how fast the next 10-12 years can go. With 3 daughters and 3 nieces, I know you can understand what’s at stake for the next generations. I could not bear to think of them having to endure this. I’m not sure of the path and the expense that will be involved ahead of us with each new study that does not find answers. They are now sending their blood to a study in San Diego, then we will have to go from there.

Below our the pictures of our candle lighting. Reid and Randon continue on in our hearts and we are all only a breath away to where they are. I miss them so much. How I ache to have my 5 year old with me this week. We’d probably be complaining about how his birthday is just too close to Christmas. What a joy it would be. My niece also turns 17 Thursday, always a bittersweet time.

A HUGE thank you to Kylie J. Monica, the Monica family and their foundation for sending Christmas care packages to the Children's Hospital of Philadelphia bone marrow transplant unit kids in memory of Reid and Randon. We are thrilled with this extension of love! Please email me if you want more info and hopefully I will post soon how you can help.

Some of you have emailed me and asked if I could put a picture of all Dale’s hard work with the lights. I tried, but did not have the big lens on the camera and not sure how to do it with the flash, but I did attempt. The last one is our neighbors (trying to give you the cul de sac effect and see what we are up against). Hope they don’t mind me sharing. The picutures could not capture everything and really do not do it justice.

Much love, hope and courage until next time
Carol

Wednesday, December 6, 2006 8:02 AM CST

*******On Sunday, December 10th, the Compassionate Friends, along with many other organizations, will observe the 10th anniversary of the Worldwide Candle Lighting - a day set aside each year to honor and remember all children who have died. At 7 p.m. local time, candles will be lit for one hour in remembrance of the children gone, but never forgotten, creating a wave of light around the world.

(I learned about this from Susan)



I only have a second to update. Things are just as wild as usual around here.
(Big sigh) Where do I start? It’s been a rough week. I just read “The Gap” that Charity posted on the guestbook. I think saying I’m very tired of trying to feel/act normal pretty much summarizes how things are going right now.
Back up to Monday. I wake up feeling pretty good, praying for strength and for a heart that won’t ache so bad today. It starts with a phone call from Vanderbilt oncology department. I see it’s Vanderbilt on the caller id, I’m putting Reese in the car and I figure they probably just wont to call about more bills, so I’ll let the answering machine get it. I hear Becky leaving a message about test results. I try to run pick up the phone, but I only cut her off. Some of you who make frequent calls to offices there, no how what it’s like to try and get back to somebody. Thankfully, it only took about 30 minutes to get back in touch with her. My first clue should have been the info wouldn’t be much since it’s Becky calling and not the doctor. At this point, I’m driving down the road as Reese and I have to be somewhere. She tells me all the blood test came back normal from the study at Boston which has been going on since August. I took it hard. I started thinking how ironic it is that I’m devastated because my sons’ test came back normal…how can it be? In the absence of so much, my heart desires answers more than I can ever describe. I’m just once again feeling so cheated asking God if at least I can have that. It hits me hard as I’m driving. Yet, I’m feeling forced to “get over it” because we are almost to our destination. I am tired of putting on the happy face and trying to just go on like everything is just ok. Yet, the alternative is no solution either. I am caught in that gap.
The day is just hectic from there. Getting things done around here and then Riley had a basketball game at 5 which is usually over around 6. Reagan had practice on the opposite end of town at 6....and yes, supermom can be two places at once…I know many of you know how it’s possible…you’re just really late for somethings. I leave Riley’s game, haul like a mad womon to take Reagan. We finally get home, get homework and thanks to friends, have supper. Everyone is ready for bed and in our new quest to do something fun everyday, we are playing a family round of UNO with Reese jumping around in the middle messing up everyone’s cards. It’s then, just in the moments of laughter, I get the next devastating phone call. My dear friend Joni…we’ve been friends since I can remember, when we were 5 or 6 and I joined the swim team and thought she was the best swimmer ever. My dad made the comment that she was born at Ravenwood (our pool) meaning they basically lived there. For years, I literally thought she was born in the pool. She is the type of friend that we may go months even years without talking, but it only takes a second to catch right back up on the friendship we've had for years. She got to come to the hospital and stay with Randon one night while Dale and I just went downstairs to eat. She shared all the crazy pictures from our high school reunion when I didn't get to attend. She's just one of those special and rare life long freinds.
I’m told that her husband, 36 years old, had passed out at work and had been taken to the hospital and Joni and her family were on their way. I immediately start praying. A short time later, I get the next phone call that he’s gone. I can’t believe it. Not this, not to Joni. They are so in love. Their son turns 3 on Saturday, the holidays are around the corner. I’m just once again unable to just breath. All I can think is make it stop, make it all stop! Immediatley I think it’s so unfair, it’s all so unfair. There is nothing I can do or say to fix it, I know that too well, yet I desparately want to fix it.

I’ll be leaving by the end of the week to go to Nashville for visitation and service. To say this family will need some prayers is such an understatement. I’m up again today, about to get ready to once again put one foot in front of the other, and completely go on in faith. Faith that His ways continue to be so much better than ours, even when I have no idea how that is possible. Faith that He has bigger plans for us than we have for ourselves and faith that we continue to see the miracle in all of it. I’ve been praying for a miracle for a long time, I just hope I recognize all the miracles around me. I’ve about discovered that every day and every moment is a miracle….what I do with it continues to be up to me.

Love, hope and courage
Carol

Thursday, November 30, 2006 7:17 AM CST

I'm not sure where this week has gone, but I can't believe it's already Thursday.

We had a good Thanksgiving as well as anniversary. The weather was great and Dale, Riley and I were able to play tennis with my family on Thanksgiving day...in shorts and t-shirts. That was fun.

It's continued to be sort of up and down days. The last few weeks have been like Christmas every time I go to the mailbox (which I have to drive too). It seems like everyday I'm getting some new suprise in the mail. I want to thank the Sunday School class in MS for the great book and notes I received. I'm not sure who was responsible for that but please know we got it and really appreciate it the great reading. Thanks to Denise and others for so many of the continued cards and truly sweet gifts, continued donations in Randon's memory, and also all the meals that have continued around here...can you believe people are still bringing us food? We have eaten so well which I guess is going to have to be the source of a new treadmill I need for Christmas!! If only somebody would use it for me, that would be perfect. Thank you for all the support. I'm not exactly sure why it helps so much but I do know on those difficult days when I go to the mailbox it's such a reminder of how so many continue to support us and care about us through all of this.

There is not a lot new to share right now. We still have not heard anything from any autopsy results or blood test. I'm going to try and follow up on that today.
I did have a nice lunch with a new friend this week that I think God allowed our paths to cross. She lost her baby in June at Vanderbilt. We are discussing possible ways that we want to use our experiences for good. Please pray that if this is something we need to do, it would become very clear. I'm not a big fan of support groups, but that is only from my limited experience with them. Going through this twice, I'm not aware of anything around here for infant loss and there are more of us than I realized. We want to form some type of help, weather its just a Bible study, or a helping group...or something. I think it's so beneficial early on to have someone whose been through it to talk to. Like I said, I know there are more of us out there, if any of you locally know of somebody that might be interested in this group of moms who've lost babies, please have them email or contact me. We definitely want it to be something where you feel better when you leave, not worse. I know it was nice for me this week just to have somebody to talk to who really knows a little about what I'm going through.

Our house is officially ready for Christmas. I'm just working on getting my heart ready. Christmas isn't going to be like I had thought, but we still have so many reasons to celebrate the season. Dale has worked so hard around here, so just put on your sunglasses and drive by our cul-de-sac (the neighbors have much more than we do).
I'm still just wanting everything to stop for a moment or at least slow down, so we can have some time to once again catch our breath. We still have that desire to enjoy every second together and try to make the most of every moment. It's a little more challenging trying to do that working around school, homework and basketball games and practice, but overall I'm so happy with how we are spending our time. I hope we can use our time at Christmas to think of things we can do for others to help our healing. It's always a proccess, we won't wake up one morning, and say "hey, I'm ok now." I know it's always up and down. Everyday I have to go through some anger, some bitterness, some questioning but always remembering our hope. I'm still praying for a Christmas miracle!

Hope you all are having a good week too and all the busyness isn't getting to you. Enjoy the moment, you'll never have this moment again.

Hopefully, more pictures to share next time. Ariel still comes and go, you just never know which princess which princess is going to wake up. Maybe we all should try to be a princess for the day!

love, hope and courage
Carol

Monday, November 20, 2006 4:18 PM CST

Reagan and I are home kind of under the weather today. Seems like every year somebody is sick at Thanksgiving and somebody at Christmas. Sore throats and stomach aches are just a nuissance..like we always say, we are thankful for the little inconveniences.

I had a much better week emotionally. Not exactly sure why, but just felt more comfort. It's a difficult time of year regardless and I've started a little early working on my holidy spirit. Being married to Clark Griswold does allow for a lot of Christmas cheer around here. I think Dale loves Christmas as much as anybody and I'm thrilled to say that all our trees (we have 6) are done and the lights all ready to go. I'll post some pictures below of the family time of putting up the tree. As you'll see, Reese and Reagan decided to skip out and we had ariel and Cinderella instead. In fact, we had Ariel and Cinderella all weekend. This morning the little 2 year old around here insists every time I call her name that she is not Reese but Ariel. We've definitely got our money's worth of some costumes around here.

Reagan and I attended Abby's funeral last week. I had a thousand excuses not to get there that day and Satan made it very difficult. Riley woke up sick and I had to take her to the doctor, I didn't have anybody to watch Reese, it was cold and rainy and I knew BJ, Abby's mom, would understand how early it was for me. However, if I had missed it, I would have missed the blessing. Knowing how much it means for friends to be with you that day, I was determined not to miss it. If you ever wonder if you know somebody well enough to attend a famiy's service or visitation, I say err on the side of caution and go. I was always so touched by those who took the time to be there for us, even more so perhaps when it was somebody I didn't know as well. Even if you know there will be so many there, I promise you that your kindness and support does not go unnoticed. I've known BJ for a long time and I decided to get through whatever hurdles to get there.
So, thinking that I was going to be there for BJ and her family, what a surprise for me. I can't really describe how I felt when I left there, but I know I left there feeling different, somewhat more comforted. Even though I have preached this a thousand times, Abby's larger than life attitude and her unfaultering child like faith, was such an encouragement to me to cherish the moment. Once again the realization that today, this moment, is all we have for sure hit me straight on. How do we want to be remembered and what can they say about us when we are gone? I was reminded to hold on and cherish every second, even with the disappointments I'm battling and even with the sadness that endures, seek out the memories, make every moment count. It came at an appropriate time, a reminder to be thankful for what we have. I am so thankful for so many things. I slept in between Riley and Reagan that night not wanting to let anyone out of my sight for a second. I'm thankful for our family and can even say I'm so thankful for the time I was given with Reid and Randon and the gruelling days we spent caring for them. Yes, how I wish it would have been much longer and I would strongly prefer they still be here, but where would I be without them? I'd have a lot fewer friends, be clueless on what's important in life and I wouldn't really understand compassion without the suffering. I probably wouldnt have allowed Ariel to run around all day in this nasty costume that who knows how many germs are on or when it was last, if ever, washed. I would have probably gone psycho on a few after the 3rd ornament broke, and would be much more bothered by all the noise level and mess around here. Now, I'm much less likely to sweat the small stuff. I miss them and continue to feel their absence in our home. I set the table for too few. In my limited and selfish view, I can't imagine a world where there is anything greater than a mother's love, but I'm learning everyday to believe and to trust that heaven is..even though it's beyond our imagination.

On Thanksgiving Day, Dale and I will have been married 15 years (Happy Birthday Holly). Yes, we were just babies (you do believe that right?) It's been an amazing 15 years. I learned last time that Dale and I grieve very differently and that's not always easy, but our hope is the same. We share some incredible bonds, being there for the birth of 5 beautiful children and holding 2 to their end is something you never forget and I can't imagine letting anything break our bond. We've definitely been saved by love.

I hope you all have a safe, healthy and happy holiday. I know holidays arent easy, even for the most normal of families. But, I hope all of us enjoy a special day.

Enjoy our crazy family time photos!

Much love, hope and courage
Carol

Tuesday, November 14, 2006 7:21 AM CST

I woke up this morning to find out that Abby Ellen Cummings also received her miracle today and joined Reid and Randon as another precious treasure in heaven.

Wow, what a way to start my morning. For once, my focus is off me and how sad I am. I ache so much for the Cummings, just beginning to phathom what it must be like to lose someone you've loved, cherished and hoped for for 10 years. That little girl was amazing here on Earth. I've only been around her a few times, but her love for life and pure determination to let nothing slow her down is forever etched in my mind. I feel forever blessed having met her.

Just another reminder of the brevity of life and how hard life is. I've struggled so much this weekend. I've got so many heart issues right now. Being the baby of my family, I became pretty good for a long time at getting what I wanted. I'm now trying to learn and accept when it's not about me and about what I want. I'm trying to learn a new way of loving God...I truly and honestly am having to love Him not for what He does but for who He is. Knowing that in that journey, I'm having to learn who He is. I've got such a long way to go. Trying to let go of my earthy understanding of things and my earthly desires is my constant challenge. None of it makes sense to me.. not our situation, not Abby's..not any of the families I met this summer. I realize that it doesnt have to make sense to me, and it never will. Do I become more bitter or do I become more blessed. Blessed for being the mother of the most amazing babies. I can assure you that being the mother of 5, I was truly able to know how wonderful my boys were. From the second I held them, I knew there was something extra special about them. I think it was apparent to everybody who walked through the doors to see them. It's so hard knowing how real they were to me, how a part of me they were..and being stuck here without them. I'm having a hard time not feeling so cheated right now. But I also have this new freedom of feeling totally comfortable expressing how I feel. God knows how cheated I feel, even if I didnt tell him a hundred times a day. Sadness, emptiness and bitterness surround me daily, if not constantly. I'm even sadder on days like today knowing another family is enduring such a loss. Catrina and I discussed at Vanderbilt how after you've endured a devestating loss in your life, you hurt even more for others. Before you could only imagine how much it must hurt, and now you know..you know there are no words that could accurately describe the pain, the anguish, the heartache and the determination that it will take to get out of the bed every morning.

Thank you for being my sounding board. Thank you for continuing to care and pray for us. I know that I continue on in the normal world, feeling everything but normal. God has provided us the most wonderful friends and family. Our house is still getting meals, cards and hugs. They have made a difference.

We expect some autopsy results to be coming back soon (they had told us perhaps around Thanksgiving). We also haven't been in contact lately to hear how any of the boys' blood test are going. A huge miracle and answered prayer for me right now would be that they can identify the gene responsible for their bone marrow disease. If any good could come from this, I don't have to tell you how much it would help if we could identify if the girls are carriers as well for this unknown disease. Thank you for your faithfulness to us right now as we have the task of ciphering through the heap of medical bills and results ahead of us. One blesing we have is that I know we can handle the bills, it's just the hard task of muddling through them and deciphering what is what. I kind of got a little heated with an innocent lady on the other end of the phone yesterday (Vanderbilt needs a system where they should know that the patient died before calling one's home..topic for another day). I realize it's all in perspective, if Randon had lived what a joy it would be to pay these bills and what a bargain it would seem, not so much a joy in our shoes but I'm so thankful that we can handle them, God has blessed us there.

Thank you for keeping the Cummings family in your prayers as well (caringbridge.com/visit/abbycummings). I know that there have been some beautiful, sweet lives that have had a huge impact on this community. Thank you for your willingness to be a part of all of their miracles.

love,hope and courage
Carol and family

Wednesday, November 8, 2006 11:32 PM CST

I’ve started several times over the past few days to update, but find myself sitting in front of a blank screen, speechless. I continue to feel that my days, and basically my life right now, are indescribable. It’s hard to put into words what it’s like when you have this new incredible appreciation of life and a hunger to enjoy every second and make every moment count, now realizing the true brevity and uncertainty of our time here. Yet, I have this incredible pain that leaves such emptiness and darkness that make me want to crawl into a cave never to resurface. Reality continues to sink in more each day. It’s been extremely difficult as I deal with coming off an incredibly hard pregnancy feeling so cheated and empty.

I relived with a friend the other day the story of Randon’s birth. It was not your typical labor of love when you make that final difficult push and hear the beautiful cry of your child as they hold him up for all to see how so worth it it all was. Randon’s birth involved an incredible number of people I’d never seen in my life in the room, Dale making it only at the very last second, and my arms strapped to a table while horrific apgar scores are being screamed out. It was more of a nightmare than a joyous occasion. There were several minutes that we did not know if he was alive or not, no one would tell us anything. They had to intubate him immediately, so even if he was crying, we couldn’t hear it. I had just gone to the doctor for a regular visit, and within a few minutes strapped to a table trying to somehow decipher what all was happening and hold on to hope that this could not be a repeat of Reid’s disease. This story plays over and over in my head. I relive it every day and remember that glimpse I got of his beautiful face for only a second as the wheeled him by to go to the NICU. I’ve never felt so completely frozen…so completely devastated. I remember thinking that this could not possibly be God’s plan for my life. The hope, prayers and expectations of the past 8 months, came down to that moment. How could it be and how would I ever endure another heart breaking loss.

I share a glimpse of this story not to stir up more sadness nor to try to have anyone feeling more sorry for us, but I think that I share it to say that life can be so hard and sometimes I don’t know if we can ever really realize what others we come in contact with everyday might have been through.. There are a few (and I mean very few) people who sometimes, in trying to be helpful, will actually say to me “well, at least you’ve got those three wonderful girls.” I’m so aware how wonderful it is to be the mother of these amazing daughters. They are my reason to keep believing and for realizing what matters most. However, we still suffered incredible losses. I loved and held and cared for 2 wonderful boys. Even though their lives were way too short, their absence in our home is so real. They are so missed. I have deep memories of both of them, that just can’t be whisked away with a “heaven needed more angels or it just wasn’t God’s will comments. If Randon’s birth was difficult, in pales in comparison to letting him go. I’m no where near ready to even begin to share that story. Realizing the trauma behind my own losses in life, I’m so much more aware of what others could have possibly gone through in their lives. I know people could see me out and about with that smile toting these beautiful girls, and think that life’s been good to me. Life has been good, but like so many I’ve probably looked at and assumed the same, there can always be so much more to the story.

Having shared all that, I want you to know how fortunate we have been to be surrounded by the most caring, loving friends, family and community anyone could hope for. And to be completely honest, I’d rather have friends say some comments that I don’t think are actually helpful, than to say nothing at all. I know that so many want to find that perfect thing that helps it all make sense and can ease my pain. The kindness that has been showered on us has been truly unbelievable. It makes it impossible for me to ask God where he’s been in my heartache. I admit right now that I’m the most unwilling participant in God’s plan for my life. I definitely have doubted that His plans for me are better that the plans I had for myself. Yet, everyday someone reminds me of the impact my boys have had on their lives. When it’s beyond my comprehension, someone will tell me that Reid or Randon’s lives have brought them closer to Him. I know what it’s like to have people truly grieve with you. It has been so very obvious of how many of you so badly want to do something to help or at least make me feel better. It’s also indescribable for me to say exactly what it’s like to feel so loved and cared for, not just me, but our entire family. You all are amazing… the cards, the meals (which have been constant), the gifts, the emails, the prayers and just the incredible love that has been shown to me make me truly understand when Christ said….the greatest of these is love.

I’m very aware that the days ahead for me are so difficult. As I prayed when Randon was alive, I continue to try and pray that more than anything, I have a heart that desires what He desires for me. I’m now learning to pray that even when I can’t imagine how any of this is “good”, change my heart and help my unbelief. I don’t want my hardened heart and disappointment to stand in the way of all the good that is out there for me. It’s hard to look past the hurt right now, but as I said before, it continues to be one forward, two back…and some days one forward. It is because of so many of you and your faithfulness to stand by us, even when I have to be the biggest downer to be around, that I have days that I take just one step forward.

For someone who started out so speechless, I sure found some words. Sometimes I’m pretty good about going on and on and never really getting across what I’m trying to say. I don’t even know what I’m trying to say. Just know that I’m still struggling and really hurting, but that I’m so appreciative of every word and deed that has been done for us. I hope my boys have maybe taught those who chose to love and follow them how important it is to share our grief and to become more aware of all the needs that surround us and how we can all make a difference in each other’s lives.

Love, hope and courage
Carol

I have to share a picture of Reagan’s new look. How I treasure these children.

Monday, October 30, 2006 2:21 PM CST

It seems to be De Je Vu all over again. Wow! This past week has been when reality is really sinking in. I had a little time since Randon’s death, to travel and shop away some pain. But, that never really works, and I’m stuck back here now, and life without him is constant and all I can do is just feel every bit of the heartache, grief and disappointment. It surrounds me. There is barely a second I can get it off my mind. I realize even more just how far I had come in dealing with my grief from losing Reid. All those same emotions that are just so raw in the beginning are so evident right now. Perhaps this time, I’m more aware of what they are, but they still feel the same. I’ve mentioned the lack of concentration, but there is also lack of patience and a sense of being completely overwhelmed with emotions. I very easily get overcome with a variety of feelings weather it’s anger, panic or even just laughter, the emotions seem to be on the extreme ends of line. I feel that in so many ways, my world stopped a few weeks ago, yet I’m forced right back in to a world that keeps on going and never stopped. A few weeks ago I was living in a pediatric intensive care unit, and now I’m at Target? It just feels so unreal, so unbelievable.

I guess it’s part of a motherly instinct that has been sent into high gear and over load. Once again, I have these just leave us alone feelings. Do not mess with my kids or my family (that includes the dog) and if you do, you surely don’t want to mess with me. It borderlines insane. We had a soccer marathon weekend that could make a normal mother crazy. I have to share an example of my feelings. Reese was out playing during a game. There were a couple of kids playing by a tree with mulch. One little boy had a car he was playing with on the mulch. Another little girl came up and asked me if I was Reese’s mother. She then tells me that Reese is throwing dirt on the little boy’s car. You know what I wanted to say, no scream…SO WHAT!!!! In fact, I wanted to get up and go throw some dirt on it myself just because I thought it might be fun and at the moment I’m mad at the world! Throwing some dirt might really feel good! However, be assured that I did not do that mature thing. I calmly looked over, the little boy was still playing and I didn’t see any obvious signs of dirt on his car and Reese had no active signs of dirt on her. So, I just thanked the little girl (tattle tale, ha ha) for letting me know and told Reese not to throw any dirt on that boy’s car. See, I can control them on the outside, but it’s insane on the inside.

This is where it gets tough. Many of those type of emotions that I have to fight everyday, only lead to a lot of bitterness. Bitterness is just blaming God. Of course, a gut reaction is to often have the feelings that we did not deserve this, not again. However, I’m wise enough to know that it is a blessing that we do not get in life what we deserve. My faith in God has changed, but it’s not gone. The sun comes up everyday and it goes down every night. That’s one of the only guarantees I have, what I do with that time in between is up to me. I can fill it with bitterness, or I can work really hard to not let my life’s hardship stand in the way of God’s blessing and the life that’s ahead for me and my family.

I do want our world to slow down. We all need more time to heal and recuperate from the separation. It’s hard to be thrown back in the hectic world while having a heart that has somewhat stopped. I back in the world where newborns are everywhere, being asked how many children I have, and complete strangers seeing me with my girls and telling me I need a boy. And even worse, watching people you know act like they don’t see you when you are out somewhere, yet thrilled you don’t have to talk to them. Some must even have worse memory loss than me, because now, when they do see me, they somehow don’t remember who I am. That one is very odd.

I have never felt that one of the purposes of sharing our story has been to sweep the emotions under the rug, put a smile on my face and proclaim how good God is. I think perhaps the purpose may be for others to see that yes, God is a good, but it is a journey. Emotions can not be shoved in a closet. Sometimes I do feel that we asked for bread and got a stone. Everyday I have to look for the bread and ask God to show it to me. It’s often surprising in the ways it’s revealed. Today I got to talk to a friend while waiting for Riley at the orthodontist. She had followed our page since Randon’s birth, and she was able, just like us, to get a blessing from the kindness, compassion, and encouragement that came from so many during our journey with with Randon. I know there was so much good that comes from the beauty of an innocent life and a time when total strangers as well as dear friends come together to support a family and petition God to save a child they’ve never even met. It is so heart warming to experience a time when you see so much good in others. I try to remember how many blessings we’ve received on the days when I’m seeing a lot of stones- and the emotions to throw dirt are all I can feel. It’s about learning that it’s ok to have moments of doubt, anger, and complete sadness but to always hold on to hope. The journey is full of days when we take one step forward and two back, and sometimes, by God’s grace, we just take one step forward. . Randon’s life as well as Reid has brought some wonderful people in our lives that we would never have known otherwise. God reveals so much love through the kindness of others. So I remember all those great people on the days I come in contact with those that have the memory loss! A sweet friend in Washington, that I’ve never met nor spoken with, sent me the sweetest note the other day that included a very generous gift card to Starbucks. I want to be a friend like that.


Reagan had a great birthday. (thanks Kristi for all the suprises) I can’t believe she is 9. We found out today she needs glasses. She’s so excited about getting them and being able to see!! We continue to enjoy each other and to become stronger because of our circumstances.
Halloween 2006 (don't even ask about Riley)





Thanks again for your continued faithfulness to us.
Much love, hope and courage
Carol

Monday, October 23, 2006 9:11 AM CDT

It seems like the entire time I was at Vanderbilt, I constantly felt exhausted. Then, since I returned home, I’ve been unable to sleep for a long stretch at a time. This morning I got the girls off to school and it was very quiet around here. Reese was still asleep and for the first time, it felt like that exhaustion in me had returned. I got back into my nice warm bed and slept for another hour. I feel a little better now.

It’s been a month since we’ve endured that immensely sad, difficult day of losing Randon. To be honest, it still doesn’t seem real. There are moments I’m still turning around looking for him, hearing him cry and panicking because he his missing. There are even moments I feel I’m still pregnant and can feel him move inside me. I think that going through pregnancy somehow prepares your body to care for a baby. I automatically wake up in the middle of the night, wishing to feed him and my empty arms once again feel so incredibly heavy. But most of all, I miss him. Yes, he was just a baby, but I knew him and loved him. He was real. It’s not that he was a “boy” as some seem to think, but because he was my child that I carried and birthed and loved and held and just knew.

I know people have seen me out and about with a smile on my face and commented how good I’m doing. I think we are capable of carrying on for those we love and putting that smile on our face to get us through the moment. But it continues to be incredibly hard. I deal with that huge gamut of emotions constantly. I know many of you know what it’s like to feel hurt, helpless and hopeless in the midst of loss. I know many, like me, want to come out of this trial understanding God like I’ve never understood him before and finding a way to continue with a life that can be counted as good. Someone told me that many people will expect your faith to make it hurt less. Faith does not make it hurt less, it only allows you from being totally devastated beyond repair by the loss.

The loss of my two boys leaves me completely sad. I have three wonderful girls that keep me immensely happy. Yes, I believe it’s totally possible to be incredibly sad and incredibly happy all at the same time. I’m proof of that. Having the girls gives me a reason to smile and get out of bed everyday. Not having Randon and Reid gives me reason to be extremely sad, which I am. Many people are uncomfortable with me being so sad. They feel this need to try and make me “happy.” Please don’t rush away my sadness. It’s so real.

I read a great book that hit the hammer on the nail for me in this explanation. Sometimes it seems like the people around me think that because we know our babies are in heaven, we shouldn’t be sad. They want to put that “heaven band-aid” on. Yet heaven feels so far way right now. My emptiness here at the moment is still real.

In church yesterday, our pastor talked of having a heart for others so much that you hurt along with them as though it’s your own pain. I too, have experienced that. I will never forget how willing so many have been to share my grief. It’s often said that when you go through difficult times, you discover who your friends are. What I’ve discovered is that I have many, many amazing friends. I would be less than honest if I didn’t admit that I have wondered about where certain people I’ve never heard from have been, but it’s probably more because I’ve been so overwhelmed and amazed by those who have been there and met needs I didn’t even know I had and who have been faithful friends. Even many, who I’d never even met before Randon. Sharing my grief and not being afraid to shed tears with me, often has taken enourmous pressure off of me.

I felt like a big part of my heart stopped beating on July 19th and another part on Sept. 23rd. I don’t think those parts will ever beat again. I’m not sure I even want them to… I think I gave that part to Randon, so he forever has it and I will forever feel it. Many parents who’ve lost children feel that way too. I know too well I have to embrace the sadness. That doesn’t’ mean that I let it consume or completely swallow me. I have to be willing to let this grief accomplish its work, even though I have no idea what that is right now. Theres a whole other chapter ahead of us called hope.

I’m so glad many of you enjoyed our Disney pictures. Dale has been a great sport even if some of you didn’t “get it” or recognize “Dopey.” I will try and share some more. I love Dale deeply and appreciate his part in allowing me to let our pain be so public in a way.

It’s still very hard to get out and about and back to “normal” around here. It’s so hard to describe, but one of my fears about getting out is running into people. I dread them bringing it up, but dread it even more if they don’t. Does that even make sense? I know many of you have been there and understand what I’m talking about it.

I realize how long this update is, my gratitude continues to those who would be willing to even read it and share in my grief once again.

Love,hope and courage,
Carol

Monday, October 16, 2006 4:18 PM CDT

We arrived back safe and Disney was everything we had hoped for and more. Since Dale is always taking the pictures, I was thrilled we got at least one of the five of us. Thought I would share it:





Ok, I still have my sense of humor at times. I can’t wait to share more about our trip but there is so much to be done around here, like unpacking, laundry and all the fun stuff we left behind.
Our big surprise, thanks to my dear friend Kelli and her friends Cathy and Fred at Disney, is that we were the Grand Marshalls for the Dreams Come True Parade on Friday at Magic Kingdom. Here are some photos of the car we rode in and practicing our waving before we took off down main street. Even Miss Reese was a natural Miss America:



We had a great time. We stayed at the Animal Kingdom Lodge and it is amazing. It could have been a vacation by itself. What a beautiful place.
Reagan’s highlight was having a birthday dinner with Cinderella and all her friends. Cinderella sang Happy Birthday to her, what a surprise for her as well (her birthday is the 25th)

I can’t wait to share more. Thanks for all of you for still checking on us. I know this week will be extremely difficult. I immediately fe;t that unbelievable sadness upon our return and the gloomy weather isn't helping. I met a lady at Disney who was talking about it being the first time she had left her new baby and how much she was missing him. I thought, me too- except I wont be able to run home and scoop him up when we return. It was nice to come home to more cheer around here from special friends and all the sweet cards in the mail. I will update soon. In the meantime, here is the big girls reaction to us having to leave:


much love
Carol and family

Friday, October 6, 2006 0:22 AM CDT

We are leaving for Disney sometime tomorrow after school. Since we could not find any reasonable rates for the 5 of us to fly, we are driving. Dale does not do well with a lot of noise and fighting, so in addition to the DVD player in the van, he made sure that everyone (including myself) has at least their own portable DVD so there is no fighting over what movies to watch.
I have a very sweet, dear friend from college named Kelli who has helped make our trip even more special, I hope to be able to tell you more about that when we return…we have a little surprise for the girls while we are there. She has a wonderful friend named Stephanie who also helped make everything even better.

It’s been a fair week. It’s always a gamut and whirlwind of emotions to deal with. I’ve stayed very busy and I think that somehow being “experienced” in grief has allowed me to better handle things. Just like before, I find myself with some pinned up anger and frustration that seems to get aimed at the wrong people. Everyone has been so wonderful to us. Every single night since we’ve returned, we have had supper brought to us by my great friends. They have all been wonderful and I’m sure my body is in shock from all that I’m eating now. I’ve gotten the sweetest cards, gifts and emails this week from so many and it’s always a blessing to feel the support that continues to surround us. I’m way behind on thank you’s, but when I return from vacation, I desire and plan and letting everyone know how much their kindness has meant. Our neighbors the Goods and Martins also continue to be such helps to us with so many gifts and rides to school and just reminders to help me stay on track. I get frustrated with myself continuing to have so much displaced anger with all the good that has surrounded us; yet I’m very aware of that part of grief. Someone posted the “Resolutions for Bereaved Parents” the other day on the guestbook. The big one that has hit me right now is the loss of memory and concentration. I could go on and on about how that has been affecting me this week.. from losing my keys to telling Dale the same story about 10 times and being unable to give someone directions to my house and recall street names. I’ve even forgotten my pin number for the ATM (Dale thinks that’s a good thing). Sometimes I think I have no business driving, but I know all this is temporary and intermittent.

I’m very excited about this trip for the girls. Thanks to all of you who have been so in tuned to their needs. They have been through so much as well, starting in January. That is when I had full blown morning sickness that never really went away. I never really felt good and for about 8 months they were very patient with the craziness around here with a constantly sick mother. Riley especially would be so concerned with how sick I was. I would constantly tell her and Reagan, it’s going to be so worth it. I look at Riley especially now (there’s been a big change from elementary to middle school) and I’m just so incredibly proud of the person she’s becoming. She has had a lot on her this past year, yet her beautiful heart comes through for me everyday.
Losing another brother has been equally devastating to them. When I finally realized that our time with Randon was coming to an end, I immediately went into the ‘protect my children’ mode. I knew I had to be strong for them. I was not prepared for how it would go. We debated on if they should see him again and how we should tell them. I was not going to ever give up on him, so we decided not to “do” anything, such as turning off the ventilator. We knew if they were to see him again, their last memories would be of him not looking his best. We decided Riley and Reagan were old enough to need some closure on this as well. When Dale told them the truth- that this would be there last time to see him and he probably would not make it through the night, I was not prepared for the wailing. They, like many of us, wanted to know why. They did not want to give up. When we explained that his kidneys weren’t working, Riley immediately knew that she had two and could give one to him. Reagan cried and pleaded as to why he couldn’t have surgery to fix him. It was heart breaking trying to explain that nothing more could be done to save him. They held him, kissed him and cried out for him for quite a while. It was the hardest for me. I tried to somehow discuss with God how it was one thing to put Dale and I through such pain again, but why did these precious girls have to endure such heartache again as well. It was devastating for me, at that moment, not only to be unable to do anything to save Randon, but I was unable to do anything to stop the girls’ pain as well. Mothers are suppose to be able to wipe the tears away and fix the pain. I would look at my precious Riley and think if only we could have gotten her marrow in him. I wondered at that moment, how any of us would ever survive this.

We are surving and have faith that we will continue to survive, although we will never be the same. The girls are incredibly resilient. They continue to beam and smile and give Dale and I so much love. There are so many things I could tell you about the examples of how they are better people because of our circumstances, but to avoid many bragging mother moments, I’ll just say that I continue to feel blessed and receive evidence of somehow our bad, terrible circumstances working for good. I’m angry, sad, bitter, and full of questions, yet somehow I still have confidence and faith that God is in control and that He has so much bigger plans for us than we had for ourselves. We are all so full of compassion right now. It is compassion we could have never known without the suffering we’ve endured. I don’t have any other explanation for how I’m getting out of the bed everyday and returning to our routine. I’m definitely hurting and grieving so immensely, but I’m surrounded by so many blessings.

So, as you can imagine, from the pain and devastation we all went through these past months, I hope that our vacation can bring them some much needed joy and all of us time to have some opportunities to live some moments as though they were our last. If there is anything we’ve learned from going through loss twice, it’s to cherish every second and don’t sweat the small stuff.

Thanks again for all your love and support of us. We truly feel it and want everyone to know how much we appreciate so many caring for us as though we were part of your immediate families. It is the evidence of God’s love that we need everyday.

Please keep sweet (Isaiah) and family in your prayers. They are finally home after such an extended stay at Vanderbilt and as just like me, Nicki has to find that way to return to their normal and provide all that Isaiah needs. We did have a fun little escapade on Tuesday. Let’s just say for the first time in months, I’ve got some toes that I don’t have to feel ashamed of in sandals!!
Also, keep Abby Cummings and family in your prayers. So many needs surround all of us everyday. It should be encouraging to know that we don’t have to go to a foreign county to find a mission that could make a difference. I know how many missionaries there have been for us.

Love,hope and courage
Carol

Monday, October 2, 2006 8:15 AM CDT

I plan on returning the lullaby on here soon, but right now I felt like ‘Held” better describes our lives right now.

It’s been a difficult week no doubt. Trying to once again reenter the everyday world, when my heart feels anything but normal, becomes my constant challenge. I can definitely say that this is what it means to be held…the promise is that when everything falls, we’d be held.

That doesn’t mean it’s easy and I know you all understand that. The generosity and love of our friends continues. The cards, notes, and meals that have been provided constantly mean so much. It’s extremely difficult to carry on in the everyday routine, but so necessary for the sake of my children and our family.

It was nice to be back in worship as a family yesterday. Worshiping with your family is something you take for granted. Two months of being separated from your family, friends and congregation make you realize what a blessing it is to be able to get up every Sunday and worship as a family. Getting all the girls ready and all the “hair” didn’t seem quite as annoying as it use to.
On the way over it hit me like a ton of lead, and I told Dale I didn’t know how I was going to be able to walk Reese down that long hallway of the nursery. Of course, being the rock he is, he just told me not to worry that he would do it. That was probably the hardest part. Seeing all the mother’s with their newborns and the joy and happiness that surrounds them. Of course, to me, it seemed so unfair. I have my little Randon; he is still so much a part of me. I smell him and feel him and see his face constantly. I never got to bring him to church and I’ll never know that joy. Very few got to look at him and ooh and ahh like you do over newborns.

Being embraced and made to feel welcomed as we returned was so important. So many were naturally good at that. I guess there are some advantages of having gone through this twice, I think I know a little more of what to expect. I knew there would be some people that we will come in contact with, that don’t know what to say or do, so they decide in order to not make us uncomfortable they won’t do or say anything. Unfortunately, that is the worse. This huge, incredibly sad thing has happened and you run into a friend for the first time, and they don’t acknowledge it. If they do talk to you, the conversation feels so unnatural because this huge thing that happened is being avoided. I think I find that most difficult because as someone who’s been on both sides, I know that many just think its best to leave us alone and avoid the subject. But once you’re on the receiving side, you realize how impossible that is. My heart is aching incredibly, and nothing is going “to take my mind off it.” Nothing. I know I have to lament and grieve. There are no short cuts in the grief process. This time, I know better what is ahead and how slow the process is. I know some days are going to be so much tougher than others. I know some people are going to be better at handling me than others. And I know that some moments I will feel ‘held’ more than others. A hug and a few words of just “I’m sorry”, can go a long way. So many have been there for us in that way both at church and wherever we’ve met, and I want you to know how much that means to us.

I have found a lot of comfort in reading the Psalms. One thing they illustrate is that it is ok to grieve, lament and cry out to God feeling forsaken. But most always, they end in praise and contentment. Perhaps my life feels so much like a Psalm right now.

We are excited to get away. Right now planning and getting ready for our trip gives me something to put my energy into and brings some intermittent moments of joy. Returning will be the hard part. However, one moment at a time is all I can do. Dale has a birthday on Wednesday and Riley has her last JV soccer game that day as well. Everyday we will try to reenter the normal world, realizing we are forever changed by Randon's precious life.

The girls are doing very well. Last time, I forgot to thank all their friends who were there Tuesday and who have been there to support them. Although they are much better than me, they are hurting too. Last night when Reagan said her prayers, very much on her own, she thanked God for our family being together again and for God to be taking care of Reid and Randon. They really get it…they joyfully accept that Reid and Randon are better than we are and that we’ll all be together again. They look to me and play off my emotions so much. If mommy is happy, we are happy. They know I’m going to be sad and they are going to see me cry quite often, but they also are my source to allow myself to be happy and to find joy again.

Thanks again to all of you for enduring with us. Your kindness has been amazing and we continue to appreciate being held by so many.

Love, hope and courage
Carol
Held:
Two months is too little.
They let him go.
They had no sudden healing.
To think that providence would
Take a child from his mother while she prays
Is appalling.

Who told us we’d be rescued?
What has changed and why should we be saved from nightmares?
We’re asking why this happens
To us who have died to live?
It’s unfair.

Chorus:
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was





When everything fell we’d be held.

This hand is bitterness.
We want to taste it, let the hatred NUMB our sorrow.
The wise hands opens slowly to lilies of the valley and tomorrow.

(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we’d be held.

Bridge:
If hope is born of suffering.
If this is only the beginning.
Can we not wait for one hour watching for our Savior?

(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we’d be held.

Thursday, September 28, 2006 7:41 AM CDT

Dale and I wanted to express our deep, deep appreciation for everyone who made Tuesday as perfect as it could be. Planning the way we wanted to say good-bye to Randon was not easy. I'm not yet ready to relive all the events of the past week, even though it seems to be constantly replaying in my mind. Those of you who've been in our shoes, know how difficult it is to put everything in to place and plan a perfect tribute to a precious life.

We were so blessed. For everyone who was able to come to visitation and the service, please know how much it meant to us. As I told several people, Tuesday was easy. Being surrounded by people who love you and care for you make the experience bearable. To look up, and see the faces of your friends and families hurting with you and caring for you is how you get through it. I had a couple of precious friends from childhood (Joni and Amy) that I had not seen in years there, and I know many of you had to rearrange plans and take off from work to be there for us, and we want you to know what a blessing your being there was to us. To our caring bridge friends that were far away, we know you were with us in spirit and in prayer. In this journey, we met some wonderful new friends and became closer to some who were only acquaintances before. God continues to be faithful in providing the love and support from others that we need to keep breathing. I'm so aware of the time spent praying and caring for our family by so many of you and we want you to know that it did make a difference. Though the outcome was not what we hoped, prayed and asked for, we strive to continue to believe that all the prayers were heard and were part of the plan. I'm confident that the plan will continue to be revealed as we see evidence of Randon's purpose.

There are so many people I want to thank. It's so hard to mention names for fear of leaving someone off. However, for Tuesday's service we want to thank Matt McDougal, Phil Montgomery (Isaiah's grandfather), Jim Krutza and my precious Robin Pemberton for the music...it was all beautiful. Steve Hussung, our pastor, could also never be thanked enough. We cherish his words and perfect message. Gaining a closer relationship with him (and our church family) is definitely on the top of the list of the wonders that came from Randon's life. My incredible friend Michelle Humphrey- where do I begin to describe what all she has done for me during this journey and especially for making Tuesday possible. She has been my arms and legs and voice so many times.
Thanks so much as well to the Shultz for taking care of little details and along with the Lord's and Chapman, providing the meal after the service. Thanks to Susan May for helping with Reese and Catherine for the wardrobe help. We can't say enough about how great Hardy and Son were and we thank God for the beautiful weather.
There are many people I want to thank and express our gratitude, but would be so sad if I left someone off. Please know how everything that was done for us was noticed and made a difference. We also want to mention how blessed and honored we were to have Catrina, Hope, Jennifer, Kelly and Dr. Dermody from Vanderbilt with us Tuesday. They knew Randon the most and are the source of all the joy we experienced in our time with Randon.
Dale and I love our family so much...our parents, sisters, brothers-in-law, nieces...how could we survive this without you all. My mom is still here with us, I'm not yet ready for her to leave. We accomplished a lot yesterday in the task of unloading all the things we acquired the past 2 months and deciding what to do with some of Randon's things.

As I mentioned, Tuesday was the easist, the task ahead of continuing our life without Reid and Randon is the hard part. There is some relief in waking up every morning not worrying about what kind of day Randon is going to have or how the "numbers" are going to look. I know all his numbers are now perfect. That doesnt take away my heartache and the pain of empty arms, but it allows us to continue with hope.

I'm so glad to be home. However, I'd go back to Vanderbilt in a second and be by his side rubbing his head and holding his hand..waiting for him to get better. Now, I have to wait to see him again. I have two amazing "deposits" in heaven. I can't wait to be with both of them again. I have no idea how heaven works, but I have to trust that it is so wonderful that even a mother's amazing, incredible love could not touch the wonders they are experiencing.

I'm not sure when is the proper time to stop this web page. But for now, it continues to be my source of therapy and expressing and recieving so much love. So for now, we will continue to update in our journey of once again becoming survivors.

Love, hope and courage
Carol

oh, I'm thrilled to tell you that next Friday, Dale, the girls and myself will be leaving for 8 days at Disney. I don't know whos more excited, me or the girls. It will provide some much needed family time and a perfect temporary distraction from the heartache.

Monday, September 25, 2006 10:49 AM CDT

Here are the funeral arrangements for Randon Speakman Miller. Tomorrow, Tuesday, Sept. 26th, there will be visitation at the Fairview Cemetery from 1:00 until 3:00. There will be a graveside service at 4:00. Directions to Fairview Cemetery: From Nashville, take I-65 North to Exit 26, which is the third Bowling Green Exit. The exit sign will read Hwy. 234/Cemetery Road. Take a left off the exit (Cemetery Rd) and go approximately two miles and Fairview Cemetery is on the left. The family has requested any expressions of sympathy to be made in the form of donations to caringbridge.org or alexslemonade.org. Thank you again for your love and support.
Shannon

Saturday, September 23, 2006 2:33 PM CDT

Sunday: Just a note to let you know that once again, we are all home. We will not make any definite arrangements until tomorrow. Like Randon's life, we will do something sweet and simple, perhaps just a graveside service.

We are mainly wanting to spend some quiet time at home for awhile. We were able to venture out today. Riley wanted to do the Calender Girl Contest at school. It was hard to face reality again and I know how difficult getting back into the routine will be, but it was exciting to bring home Miss March.

We continue not to need anything but your prayers. Once again I have to express how much the care of Catrina, Kelly, Deidra, Hope, Justy and all the nursese our lives crossed with at Vanderbilt, has meant to me these past weeks. They loved and fought for my son so much. They became such a part of my life..I miss them already too.
I appreciate all of you as well for the graciousness you have shown our family.
love, hope and courage
Carol








At approximately 2:09 this afternoon, Randon joined his brother Reid in Heaven. More details will come from Carol and Dale as soon as they are able. I just wanted to let all you dear friends know who are checking on him regularly. Please check bad soon for more information from his parents. As always, thanks for your continued prayers, love and support!
Shannon

Friday, September 22, 2006 5:30 PM CDT

It has been a very sad and disappointing day. Randon has stopped putting out any urine. The doctors came in early this morning and have concluded that all reasonable and humane efforts to save his life have been made and that it is best to stop his medicine. It is complicated but what is helping one problem (blood pressure) is causing another (kidneys). Carol and Dale have have some tough choices to make. They are relying heavily on the many trusted medical personnel here. Carol wants me to assure everyone that they have not given up on Randon. There have been so many wonderful, competent and compassionate people at this hospital who have fallen in love with Randon and his mommy and daddy. Everyone who has come into the room today has cried. The whole family and the Millers' pastor have been here together most of the day and that love is so strong. We truly feel God's peace and comfort! Please continue to pray for Randon and Dale and Carol. The site will be updated as soon as possible. Love to all, Shannon

Thursday, September 21, 2006 4:13 PM CDT

It's been another draining 36 hours or so.

Randon's kidneys once again seemed to have shut down. One doctor came in yesterday and suggested we "withdraw care." Dale and I both did not have peace about that nor feel we yet had enough information yet. As you can imagine, it's been exhausting and heartwrenching.

Please continue to pray for sweet Randon. Dale and I both need complete wisdom and peace. We've seen too many doctors tell us to many things that were wrong to make drastic decisions right now. His kidneys have improved today although it's going to take a lot of output to get all the fluid off him and protect his lungs. He has done it once before.

As long as Randon continues to fight than we will be at his side to support him. We definitely appreciate all the fervent prayers. Please know that we feel all the support that surrounds us and it has been such an encouragement. We aren't sure of God's plans for Randon's life, but I'm sure that I continue to seek His peace and to be in line with Him as we make our decisions. I continue to need more strength and faith.

love, hope and courage
Carol and Dale

Tuesday, September 19, 2006 7:56 PM CDT

Just a quick update to ask for continued fervant prayers on our behalf. I find myself in the rare position of being completely unable to find the words to share with you all what is going on.

Randon continues to need his healing miracle and we will continue to pray for it until the end. It seems some doctors have given up on him but others perhaps have not. I pray that the Lord would make his presence known and clear to us. He has been faithful to surround me with such wonderful nurses like Catrina and Kelly today that have been the source of my ability to keep moving forward. I can't begin to describe what it's like with such a variety of information coming in and out of our room all day.

Randon continues to fight, but his body is still having a rough time. I need some time to try and just breath and listen. I'm about as broken as I've ever been in this journey. I continue to pray that if our circumstances do not change, that my heart's desire will.

I also encouraged that you continue to care for us and support us through these dark days. I continue to believe that every life has a purpose. I hope we all continue to look for ways to make sure we our fullfilling that purpose.

Thank you for caring for us. We will see if Randon can once again pull through this episode and have a liver that can withstand a transplant.

Still holding,
Carol

Monday, September 18, 2006 8:20 PM CDT

Just a quick update and hopefully I'll be up to sharing more soon.

First of all, we had a great time with the girls yesterday. Disney on Ice was a big hit and the Suite was great. A big time was had by all!! Dale even loved it. With three little girls, he has learned to love all the "Princess movies."

Randon had another very tough weekend. He once again went into shock from dehydration and is once again swollen with all the fluid leaking out of his vascular space and his body still thinking he is dehydrated. Saturday morning he got to a rate of 14 and was doing really well with the weaning. He is now back on full ventilator settings and really sick. They think it's once again relatd to his inability to tolerate/absorb feedings.

We also had a long and difficult conference with the bone marrow doctor. Basically, when we get over this episode, we will probably preceed on to transplant. He will probably not be off the vent by then, which is one big problem. The biggest problem, however, is his liver. It's not improving and they are afraid it is already too damaged to survive transplant. Going in to transplant with a biliruben as high as his is normally unthinkable. They may attempt a mini transplant which I will try and explain later. So many things are not going to get better without the new marrow, so pushing ahead is all we can do. Praying he gets ove this episode soon and that God could work some big healing in his liver between now and then.

The rollarcoaster continue to take it's toll. My strength comes in waves too. Dale continues to be a rock. The next few weeks are going to be difficult, scary and heart wrenching beyond words. We continue to pray for strength and comfort to handle whatever comes our way. I can't begin to describe the difficult weekend. Not only with our emotions and Randon's worsening state, but other children and families enduring unbearable losses here.

Thank you for your fervent prayers. We continue to pray for Randon's miracle and to remember that we always have hope.

Carol

Thursday, September 14, 2006 3:20 PM CDT

Another day is moving right along and so far, it's been a very stable one here. Randon seems to be having a good day although he seems sleepier than usual. I'm currently waiting on the results of his latest head ultrasound. They want to give him platelets less often, so before they go down on the parameters, they want to make sure there is no bleeding.

Yesterday at this time Randon was on a rate of 30 on the ventilator. Right now it is at 22. So far so good! He needs to be at a rate of 8 to do the CPAP trials and to extubate. Although he still has a way to go, he is moving in the right direction. The goal is for him to be at 18 by morning. After all the discussions the past few days, I realize how important these steps are, especially for getting to transplant.

Emotionally, I have had a fairly good day as well. Each week my homesickness gets much worse by the end of the week. I hope to see Reese tomorrow and the big girls will come down Saturday after Riley's soccer game. Dale and I are in the beginning stages of our discussions about starting to trade off. Although we enjoy our time together here at night, I'm needing more time at home with the girls. I feel much more comfortable leaving if he is here. There is no easy answer, but I hope that if Randon continues to be stable, I can get home more often. We continue to feel that even though our circumstances are difficult at best, our family is suriving and doing as well as possible. My big girls are such troopers and if I learned anything last time, it's how incredibly resiliant they are. Perhaps this has been a greater hardship on me to be separated from them than vice versa. Oh, I miss them so much. I could get extrememly depressed if I let myself dwell on it too much.
Eight weeks ago at Randon's birth I could not phathom how one single good thing could come from us going through this again. As much as I learned from our first experience, I think I had gotten back into the daily rut and forgetting the brevity of life and what things really matter. Nothing will change your perspective faster than life in a pediatric intensive care unit. I'm surrounded by heart ache and hardships. But in the midst of it all, I still cannot deny God's work. While my first reaction is probably the same as many.. questioning where is a loving God in these circumstances?, seeing compassion and love in so many of the little things are often unexplainable. The wonderful people that have crossed our path and the friendships we are making in this journey help me to stay believing and hoping. Someday I'll be able to share more about that.

In the meantime, I have a child who needs me right now. I want to be here beside him as much as I can be, fighting for him and doing everything I can to help him. Ultimately I know his future is not in my hands. That is one of the hardest things to accept. If it were something I could fix, as most mothers, I would climb whatever mountain it took to fix it. I have literally given Randon back to the Lord, realizing I have no idea how long he will be loaned here to me. Our family dynamics have and will continue to change. By God's grace, the prayers and kindness of others, and the sure determination that we all have, I believe our family will be stronger and better because of our circumstances rather than in spite of them.

Thank you for continuing to pray for Randon's miracle and healing. I pray for help in preparing our hearts and giving all of us strength and courage to face each day, or even each hour. I think some interactions and conversations I've had today have put me more in philosophical mood today. Not sure exactly what I've been trying to say, except to even encourage myself to allow our circumstances to make us better and not bitter.

Did I mention that they moved Isaiah right beside us. I guess they were tired of Nicki and I yelling across the way to each other. I have a feeling they will not be in the unit much longer. I'm thrilled for them, but sure gonna miss them. We havent had much more excitement around here lately. How can you top the Rascal Flatts and Belle? We will have to see what next week brings....maybe Tim McGraw/Faith and Barney!! You never know.

love, hope and courage
Carol and family

Wednesday, September 13, 2006 5:05 PM CDT

It just dawned on me that this is our 8th week of incarceration here, I mean hospitalization. I also realized that my updates often do not flow real well and the spelling errors are almost laughable. So I felt the need to explain that while updating I'm often interupted several times with Randon's alarms going off, or doctor coming in here, or a phone call or the nurse needing something and of course Randon needing something. And of course, with the total exhaustion that I have felt for a long time now, my spelling is even more horrendous than usual (it's never good). My train of thought gets sidetracked easily. So if I say something that does not make sense that you are curious about, let me know and I will try to explain better.

Yesterday I even think I put the wrong word for the bronch results. They found some bronchial malasia, which is the weakness. I evidently raised some eyebrows of a few of my more medical friends who are following.

It seems as if at times I in the midst of this battle of optimism vs pessimism. Not just from me, but from the doctors as well. I can't describe how completely drained by all the information that comes and goes in here. I have no doubt that every staff person that comes in this room wants to help Randon and wants him to get better. But he is so complicated and there are so many different thoughts. I have no idea when to really panic and when to really feel good. Yesterday seemed to be going great. The pulmonolgist came back and spent a long time with me. I very much inquired with him about our risk of the pulmonary hypertenions during transplant like Reid's. He too was very interested. He told me he wasn't on service when he did the bronch but just helped a friend out when he joined in, but he now knows that it was no accident. Wow, that was what I was thinking, but for him to say that I knew that it definitly worked out for a purpose. He also said that Randon's lungs would get better as his nutrition gets better, and he was going to follow up with our doctor from CHOP (which he has already done) to gather some information. I was fairly up when he left, then Dr. Smith and Dr. Cofer came in about an hour later. They were concerned that his malasia might make it difficult to get off the vent before transplant and thus they may have to trach him for transplant. I immediately know that that will not fly with our transplant doctor. His two requirements for transplant our nutrition and a good respitory status. A foreign object in place when you have no counts is only setting transplant up for failure. These doctors are suprised with my reaction and admit they need to talk to him, but do not think it effects his ability to be transplanted. To make a long story longer, just more confusion. We will have to all meet once again and make all those decisions. But more good news today. One of the more aggressive ICU doctors comes back on next week and he stopped by to see us. He assured me that we will not say Randon can not be extubabted until the tube is out of his mouth and he sees that it does not work. That is all I can ask.. do not count Randon out and give him a chance. I have seen both him and his brother prove many doctors wrong. Again, I'm thrilled with every single doctor that has been placed in his care and have no doubt his best interest is what they are working for, but I'm sure you can tell by the overload of information here, how confusing it all can be. So not only do I petition God for strength (thank you Holly for the great braclet I received today) and wisdom for me, but for every professional that walks through our door.

Just when I felt somewhat confident that God has given me the strength and assurance to handle whatever may come our way, when they started talking about tracheotomy and home ventilation, the flags went up an and I said, Lord, THIS I can't handle!!

Deep breath, more prayers...and remembering we are not there yet. Randon just looks so good. He's awake more and more everyday and Osama came by (he's on cardiac ICU service now)and was thrilled to see him tracking with his eyes today. Naturally, we've gotten closer to some more than others and I wonder if they are optimistic because they like us and it's what they hope, or if there is objective information to support it, I know it's part of both.

I got very little sleep last night and then I made it worse by getting mad at myself about worrying about what has not happened yet. I only have the strength for one moment at a time. I am learning new ways to deepen my relationship with God by becoming more honest in sharing my sorrow and trusting in His presence. Hope gives meaning to the twist and turns in this journey. My hope lies in the knowledge that I am not alone. Randon continues to need his miracle, and I have hope that he gets one, we've seen it in the making already. Holding on to hope always.

love, hope and courage
Carol

Tuesday, September 12, 2006 11:44 AM CDT

My day did not start quite as well today as it did yesterday, but it seems to be improving already. I am a little later to update than I had intended because I got side tracked by the Rascal Flatts. Child life came by and told me they were going to perform in this really neat theater they have downstairs. Since I knew it would be impossible to transport little Randon down there, I thought I would skip it. Well, Nicki came and said lets go, and so we went. We had almost a little private concert. There were a few children and parents and a lot of media. After fighting 2 hours of traffic to get here this morning(and I'm not exaggerating!!) it was a nice little perk to the morning. There were some Disney characters here too.

I know you are interested in the results of the bronch. Dale is our technical one and could probably explain things better. I understand all the numbers and what the mean and where they should be and what could be effecting them. He gets into the pictures and the anatomy and the details of how everything should work. Therefore, I wont try to really explain just give you the gist of what I heard. It wasn't the best news we could have gotten, but it wasn't the worse.
They found some mild metaplasia(?). We were hoping for a mucous plug they could just get out. What I heard them saying that this is basically floppiness or muscle weakness that he was born with. Normally, it wouldn't be a problem, he would probably outgrow it but it's more of a problem since he's sick and his sickness, weakness and mal nourishment aren't helping it get any better. However, there is no primary lung problem and as he gets better,so should the lungs. The plans are to go ahead and still try to wean him off the vent but this could make it more difficult and take longer. Dr. Taylor was on last night. To me, she is always the most optimistic attending and I just greatly admire her. She seemed to think that this was ok news and doesnt change any of our plans.
The biggest blessing yesterday were the doctors that we met. Dr. Cofer (ENT) and Dr. Paul Moore (pulmonolgy) were great. They spent an incredible amount of time with us after the procedure. Our pastor had been waiting with both us and Isaiah (who was having cleft palate surgery at the same time...and did great) and they can vouch for how long we were gone once they called us back after the procedure. Their compassion was so evident and the pulmonologist just seemed very interested. So we spoke with them some more about Reid's situation and the pulmonary hypertension. He wants to come back, probably today and talk to me some more and follow us closely. They were both just great and incredibly easy to talk to and helpful as well. I feel better knowing they are going to keep following and help along the way as needed.
And, I forgot to mention, Randon tolerated the procedure without any problems. He is so tough to be so sick.

They have started him on pedialyte today and are trying to let the gut heal while also keeping it working. Nutrition is so important, even for his lung improvement. So feeding and ventilating are the two big issues keeping us from transplant. The plan Dr. Smith came up with yesterday continues and I feel so much more confident that things are moving in the right direction.

I also wanted to mention that because I'm checking my email remotely, I don't get them all. Without warning it removes everything from my inbox at various times. I don't know why it does this or how often but it makes it really hard to reply unless I'm able to reply right then and I dont know how many I'm missing. So, if I havent responded, you know why.
Yesterday, Isaiah's friend Jenny brought me a gift from my friend Elaine....a bag of chocolate covered expresso beans! Thanks for that, we had a lot of fun with that. We shared the love with some of the nurses up here and got several of them hooked so they didnt last long.

Oh, Belle just came in here...yes as in Beauty and the Beast and made her picture with Randon. I know some sisters who are gonna be jealous!!!!

So, we are having a big day!! Praying without ceasing continues. Everyday, there are so little things that let me know that we are not forgotten, God is right here with us.

My sweet Reagan has strep throat. I know my girls are reading this, so help Reagan get better so we will all feel good for the Princess show on Sunday!!!! (David and Gabby, Reagan wont be at soccer..I know you understand). Thanks Prissy for the treats you brought them yesterday, I heard how much they enjoyed them.

I appreciate you all so much. Your help, support and kindness to my family helps be see the splashes of joy in the midst of the heartache!!!

Monday, September 11, 2006 11:36 AM CDT

Randon is sound asleep for the moment. He is much more awake now and therefore when he is awake he is often agitated because of this tube down his throat. So, while he was sleeping soundly, I felt the need to update some info. I love keeping you all informed, but I still realize that putting all this in writing helps me tremendously. I love so much the encouragement that you send like that we were prayed for at Dale's reunion (can you believe he is that old?) and at Godstock. You all are the best support group anyone could have. Who needs counseling when I have all of you and support you give.

This morning has been one of those where so much has fallen into place. Being convicted to pray for my relationship with God rather than just seeing him as my "Santa Claus" seems to be doing great things for me. I have to be prepared to handle whatever comes my way. If I'm able to believe that He will get me through no matter what and praying for the desires of my heart to be in line with His, then I can survive. What had made me most afraid in these dark times is not why did God allow all this to happen..again, but my fear that maybe there is no God. I have had to make the effort to find Him and hear Him and that is happening more everyday. I realize I can't find him if I'm obsessed with only one thing- Randon's health. I confess that I've often felt that if I can't have that, then I don't need Him or there must not be a God. I need to be more obsessed with where I am and who I am in Christ. I'm the one that has been so far away.

When I arrived I had prepared myself that we would be having a nurse we've never had before and it might be a long day (Catrina not back until Thursday).
Well, Kelly was here when I got here (she didnt think she would get us today). I'm having as much confidence in her as I do Catrina. That was the first big YEAH!!! Then, my parent's pastor came by with Starbucks..I'm always up for that! I had expressed some concern the last few days that I felt like we are just spinning our wheels with no real plans, everyday just seems like more of the same. Honestly, I was concerned that as the doctors change, just keeping him stable was ok. I was also worried that the doctor that was going to be on this week might be the biggest wheel spinner and just happy to let him hang out 'stable' a little longer. Boy, was I wrong about her. After rounds, the nurse came back in with a big grin on her face and said "I've got news." I was also on the phone having a wonderful and much needed converstion with Heather, Kylie J's mom, which I plan on continuing soon. That conversation was very encouraging. Kelly tells me that Dr. Smith (Heidi) couldnt get Randon off her mind last night and got up and really went to work on what to do. I won't go into detail with everything, but suffice it to say that today, she had a "plan" I love to have a plan rather than wheel spinning. Pulmonolgy evidently are even bigger wheel spinners (have only come in this room once for less than 1 minute total), so she skipped them and went to ENT. And yeah, Dr. Coffer was on and very willing to do a rigid bronch (another blessing). Hopefully, we can find out what is going on with the lung and it should be this afternoon around 4. Dr. Smith also had a plan for getting the fluid out of his belly which is also effecting his respitory status.
So while I didnt walk into my miracle this morning, so many things were in place and I feel like we are all now on the same page as far as lets find out what's going on and get on with it and do everything we can to get him to transplant.

I know I've mentioned several nurses by name, but there are so many others that have been great (Justy, Ginger, Bonnie, Lisa, Deidra, Sarah, Katie...just too many too mention them all and I know I've left someone out....I sound like I'm accepting an academy award) Anyway, they have all been wonderful and I couldn't be happier with how so many have not only shown Randon wonderful care, but all of our family. Vanderbilt even gave us box seats to Disney Princess on Ice next weekend. (that may have been a secret so don't tell, even though I just posted it on the world wide web) I know 3 little girls that will enjoy that.

I will update when I learn something from the bronch. Praying for something that is fixable with that lung and no complications with the procedure.

holding on tighter,
Carol

Friday, September 8, 2006 3:13 PM CDT

WEEKEND UPDATE:
We've just returned to Randon's room after a 24 hour vacation to Bowling Green. Randon has been stable and with no new plans for the weekend, and Hope was here last night and Catrina today, we went home. It was great to be home for awhile and sleep in our own beds. I actually went to the grocery with Riley and then we had our usual but much missed movie night. We had plans to even make it to church, but we slept. I've never been so exhausted and wouldn't you know, Reagan got sick in the middle of the night and is now running a fever. Deep breath, that's really no big deal just paranoid to brind any germs back to the little guy.

So, just wanted to update that they may be doing the bronchial scope tomorrow to find out more about why that lung is still down. Not sure when I will get to update if they do, but somewhat anxious about this procedure. He will have to go down to the OR and have is tube changed out to a larger one which of course will have some risk. Another deep breath, still one moment at a time.
Also, please remember Isaiah (ky/isaiah) as he has his cleft palate surgery tomorrow.

Thanks so much to Heather, Kylie's mom, who added the beautiful lullaby to the guestbook. Somehow in her spare time of caring for her crew of 10, she was able to help me. I will try and share the lyrics on here soon.

I will try and update as soon as we know something tomorrow. Hoping we can start making some big steps of progress and get this baby his beautiful sister's marrow! and get home by Christmas! As hard as it was to leave Randon yesterday, it was even harder to leave the girls with Reese crying "please don't leave mommy" as we left. Again, one moment and breath at a time.

Did I mention one of the nicest things about being home??? My house was so incredibly clean. Wow, I had no idea it could look so good. My mother is probably the best house keeper I know, obviously I did not inherit that gene.

Praying for God's plan first, and our desires second!!!
Carol











Today has been really good for me. I basically made Dale stay in Bowling Green after work yesterday. He needed to go home and see the girls and get some rest. He has driven down here every single night after work and then getting up at 5 and going back every morning. So, he stayed in Bowling Green and I stayed in the ICU room with Randon. Randon had a great night, so I left here at 6:45 this morning and went home to take a shower. Then, by 9 am, miss Reesie cup came down with my mom and she and I had some fun time together. We had a little retail therapy at Opry Mills. It was so good to get away and do something normal. I've really tried to have a new attitude the past couple of days, and I really think the Lord blessed me by allowing me to get away and actually not worry too much and enjoy.

Reese and I then met my mom for lunch before they had to get back so she would be there when the big girls got home. I came back to the hospital around 2. I have just been feeling so...well, yucky I guess is the word. I put make up on every morning but usually cry it off by 9 am and then my hair has been an absolute mess with no time to cover up the gray and I've been about 3 different sizes since giving birth. When I came back through the ICU doors this afternoon, a nurse that we have never even had before said to me when I walked by her, "you always look so cute, I don't know how you do it" I thought I was going to choke. I started to ask her if God told her to say that to me. If I hadn't been the only one there I would have thought there is no way she could be talking to me. I guess it was just what I needed to hear at the moment.

Randon did fine while I was away. We still don't know what caused his blood gas problems yesterday, but they were fine again by last night. He is once again off the blood pressure medicine and all his sats are good. His biliruben actually went down a little today, they don't want me to get excited yet, but hoping it might be a trend. He's still tolerating feeding...2 whopping CC's an hour!!! that is probably less than a teaspoon. However, they are going very slow this time. I'm convinced that the episode that got us here was him going into shock from dehydration as well. So many little things just get out of whack with him so easy. He has had trouble with glucose, sodium, potassium, liver enzymes, biliruben, thyroid, coags, platelets, red cells, .....did I miss anything? Despite all that, he still is so cute and strong in his own incredible way. All these things are doing better and some numbers are even normal now....so getting off the vent continues to be our next hurdle but they wont to go very slow with that as well and let him get stronger. They did do a head ultrasound to check for any bleeding in the brain and his brain looks good!! He is awake more everyday. It's so hard to watch him cry around that tube yet it's hard to watch him so sleepy sometimes. He is on less sedation now.

Praying that the desires of my heart become more in line with God's will, is helping me tremendously I think. I have to work on the relationship first. Honestly, that relationship really hasn't been a close one this past couple of years. It was a relationship I talked of but not one I earnestly did my part to maintain. I'm still incredibly sad and homesick, but I just can't dwell there. We will get through this. One moment at a time, one breath at a time.

I miss you all so much and have enjoyed "meeting" so many I never knew before. I can't express enough how much I appreciate all the fervent prayers on our behalf. Last Friday when I was talking to Osama, he told me that that first day Randon got down here to ICU, with all his issues and the picture he presented, he had less than a 1hance of making it this far. There is a reason he's still here. I'm so glad he is, as just like his brother and sisters, he makes me a better person and I learn something from him everyday. So, we do need the prayers to keep coming.

much love, hope and courage
Carol

Thursday, September 7, 2006 3:04 PM CDT

At the request of one of my dear friends, I'm trying to update earlier so she can have an update before she leaves work everyday.

So, I had hoped to have more information. Today has gone fairly well. He is having some ventillator issues now that are worrisome. Getting him off the vent is so important. He has been having bad blood gasses today (for my medical friends-ph of 2.23 and CO in the 70's). No one can figure out why and yesterday his gases were good and metabolically, everything has been so much better today. They are once again considering a bronch but it would be a risky procedure for him because of his airway being so small, it could still be comprimised even with the smallest scope. His right lung is still down. We've had some confusion on that. One doctor thinks it was something he was born with and will always be down, but that's not what the others are saying. If I learned anything, it's that as wonderful and as knowledgable as they are, they are sometimes guessing. Randon is so complicated. Getting off the vent is probably our biggest hurdle to cross and most immediate concern.

Since my post a couple of days ago about how I hate to hear comments about all this happening to me because God knew I could handle it, I've had no less than about 10 emails from my friends who were afraid they had offended me and apologizing. No one owes me an apology for anything they have said. Please know that it wasn't anything anyone said in particular, just one of those cliches that make me nuts. What I really should have said was that I'm totally uncomfortable being told how strong I am because I know the truth. Therefore, I can assure you that I wasn't "chosen" for my strength. And, in fact I wasnt "chosen" at all. This happened (again) and I have to deal with it the best I can. I'm the mother of this special child. There is no other choice than to fight for him, pray for him and love him. That is all I know to do right now and what most of you have or would do in the same situation.

What I'm focusing on now is trying to stop praying constant prayers of petition to God and try to pray to have a better relationship with Him. I can't find Him now because I think I only want to see him if he's healing my child or when good news comes. Perhaps I need to focus on praying more for my relationship with God and that my will would be more in line with His, rather than vice versa. God doesnt say he wont give you more than you can handle.. I think it says He gives you the strength you need at the times you need it. I'm trying to pray for srength to handle whatever comes our way and for heart that is able to accept as well. Of course, I still petition for our miracle and still believe it can happen, but trying to put that secondary rather than primary. My desire for Randon's miracle is stronger than my desire to know God better, and that's not ok.

So, that is where I am today. The feelings here change minute by minute according to the "numbers" on the screen and in the lab reports. My struggle is to keep my heart and faith constant so my desires will change.

Continuing to appreciate your prayers for all the above. Thanks to so many of you who have no idea of what a blessing you are to us. We love hearing from you and each time you show kindness to my children or my family, it helps us get through this trial a little easier.

love, hope and courage
Carol

Wednesday, September 6, 2006 3:23 PM CDT

We've had a better day today. I feel as though we are back to where we were a few weeks ago, but once again he is making progress. His kidneys are working great, in fact, now they are afraid he is going too much and then his body still thinks he's dehydrated. He is requiring just a little dopamine (5-6) for his blood pressure and all his blood gases have been good today. His potassium is really low, (I never knew what a big deal potassium is) and has to have those "k-runs" often. Everything else has looked good today and he is acting like he feels better. He's actually been awake today where I don't think he hardly opened his eyes yesterday. His abdomen is still so swollen so it will be awhile before we can start feeding once again. We continue just to wait, pray and trust he gains his strength back, gets off the vent and gets to transplant.

I'm doing better today too. I have found another nurse that I feel confident in and Catrina will be back tomorrow.
All the communication has been good today. My heart hasn't ached quite as much. I looked at that time a few minutes ago and realize it was time for the big girls to be coming home. How I miss hearing that door open when they come in off the bus everyday (Riley is fortunate not to be riding the bus this year). I miss going through the backpacks and seeing and hearing about their day. My nurse today asked me what I missed most about being home. I had no idea how to answer that, I just miss being there.
Since he's been sleeping more the past few days, I had some time to read and for the first time was interested in reading. With all that has been going on, I've lost interest in almost everything it seems other than sitting by his side and talking to the girls when I can. Today I actually felt like reading, so I read our Bible some and found a good book on prayer. I continue to remember that its about faith and not feeling. I know that my feelings will change by the second, but my faith remains constant.

Thank you for continuing to support and love us through this. I've tried today to turn the focus today away from me and my feelings and pray for others. I pray for every person I've met on this journey or may come in contact with and always aware that something thats said or happens may have a greater purpose that I might not ever realize.
I know I'm very discouraged and heart broken, but still some amazing things have happened on this journey that I hope to share more about someday.

Our friends Tim and Nicki will be moving to a floor with Isaiah. It's been nice having them here, but so glad they are getting out (they will be back in a few days after surgery). We've enjoyed having a familar face close and someone to eat with around here. There is a little food court here (it's like a mall) that has a great coffee place and I try to get away more often. Nicki got me hooked on mocha Joe's. I guess thats better than the chocolate covered coffee beans we had in Philadelphia. Slowly, in baby steps, I try to make myself do something other than just sit at his bedside.

We appreciate your continued fervant prayers for Randon's healing. I wish you all could see him and see the little fight in him. He's so precious.

Time to call and check on my girls.

love, hope and courage
Carol

Tuesday, September 5, 2006 4:01 PM CDT

The past few days have been the type where I'm trying to listen more than speak.

When we left here Friday night, I really had a peace. Dr. Osama once again spent some time with me and Dale (actually just me, Dale didnt get to hear everything). It looked like we were really on the road to getting to transplant. All the "numbers" and things were looking good. Randon was having a great day. However, I had been concerned about some feeding issues and some diareaha he was having, but didn't really realize how much that could impact everything. In ICU, the doctors have to switch out because they are here for so long at a stretch. Unfortunately, by nature, you are going to like some better than others, and have more confidence in some. I had been frustrated, like I mentioned on Friday, that I had not talked to a doctor in several days. Some, like Osama, make a special effort to go over everything with me, explain the numbers, and show me the x-rays, etc. but when he and others hadn't been here, none of the attendings had stepped foot in this room. There were some little things that I'm not sure were getting transferred from doctor to doctor and nurse to nurse. Catrina had been gone as well.

So, when we came back on Saturday morning it was the beginning of just another heartbreaking setback. Still not sure exactly what happened, but the best guess is dehydration. Once they started enriching his formula he had the diareaha, pluse he had been on so much lasix/diarel drip to get the swelling off. Osama even mentioned on
Friday night that maybe he had been diaruresed (no idea of spelling) too much. Normally, a little volume could help out, but it went too far, too fast and before I could realize what was going on, he was so swollen again, back on dopamine for his blood pressure and in renal failure yet again (third spacing back). Heartbreaking and total frustration and panic do not begin to describe the rollarcoaster.

Things seem better today. Kidneys are starting to work again.
They also discovered bacteria in the breathing tube and started antibiotics. He's back on big settings on the vent and low ph. But, Catrina is back and I got a chance to talk with the new doctor on service. Because we've taken care of the only other person that has had Randon's disease (Reid), there are some things we know about it that they really don't and if they would keep us in the loop, it might really help. This new doctor totally agreed and once they sit and talk with us, they usually realize that we know what we are talking about to some degree. Obviously I'm not a doctor and don't pretend to be, but I knew he was not tolerating enriching the breast milk and that some neupagen shots might help his white count (which has been less than 2.0 and worrying about more infection). I asked them on Thursday not to enrich his formula (and hem/onc doctors agreed) which probably caused the dehydration, but the word never got passed down and carried through. His electrolytes got so out of wack and Randon has no reserve which makes everything complicated. It's frustrating because I really think this setback could have been avoided. Having said that, I believe that this is a wonderful staff here and everybody here wants to help Randon. There is no doubt he has had excellent care but there had been some break downs in communication. I can't stand to be one of those constantly complaining mothers, so I've often bit my tongue with things that have bugged me, but I learned my lesson that things I feel strongly about I am going to have to speak up.

Of course, I've been here since July 19th. It's like I told one of our nurses, I'm just frustrated in general and I have little reserve as well. It's nobody' fault, it's just a stressful sitution. I was so excited about seeing the girls more this weekend, and then Randon takes a turn for the worse. It's heartbreaking when your two year old asks, "Is my baby brother all better?" How do I explain it all to her? I miss caring for them on a regular basis so much.

My first response to this setback was to give up on all of it...give up on doctors, give up on prayer, give up on God (but I would never give up on Randon). I want to just fold and say the more I pray the worse things seem to get. However, I'm becoming more convinced that there must be a better purpose for why I'm going through all this. I've accepted that it's ok to lament and let God know exactly how I feel. I don't understand, I don't like it and that I can not bear to lose another baby. And if you want to see steam come out of my ears, then tell me that this would never happen to you because you couldnt handle it. I don't belive for a minute that God chose this path for me because I can 'handle' it and don't be fooled into thinking something tragic wont happen to you because you can't. That is such an unfair assumption and goes along with the rantings of some of Job's friends who thought they were helping. There is a purpose to this experience and I continue to believe that in His timing, I'll figure it out and hope to see the good that will come from it. My biggest hurt/concern has not really been why God, but rather where are you God? It's often hard to hear him and feel that he truly loves me. I realize I've got to look harder, and not give up. I'm learning more about trust, patience, and prayer. I know God is here, I've got to be more willing to look for Him.

Randon needs me now, hope to have more good news in the future. I feel better already just venting the events of the weekend. We continue to need your prayers and sincerely believe they make a difference.

much appreciation
Still holding on
Carol

Friday, September 1, 2006 10:00 AM CDT

Just a quick note to let you know the latest.

Yesterday was an ok day medically, but very difficult for me emotionally. The up's and downs and many many rollercoasters I've been on we're having a toll on me. Bitterness, frustration, doubts, fears and impatience just about took over me. Randon has had some more vomitting and fever and other issues, I hadn't seen a doctor in our room in 2 days and the doctors change so much, I didn't even know who to look for. In addtion, Catrina was gone and it was just a day for almost having another meltdown. I stayed with Randon last night because his O2 stats were dropping and I was worried about the feeding issures. Finally, one of the ICU Fellows came in and spent some time with us. Just as thing goes, he was doing ok again by this morning. It's not anyone's fault, just the nature of extended life in the PCCU becomes frustrating. I just needed to vent for a moment.

I decided I had to get away. At shift change at 7 am, I left there. I worry so much leaving him but I was becoming the type of person that wasn't doing anybody any good. My mom had to come to Nashville today, so I came to spend time with Reese. I desparately needed her and needed to be a normal mom for a moment (if there is such a thing). I'm spending some time with her this morning and will head back up there in a little while. I'm looking forward to the long weekend and hoping Randon will do well and Dale and I will be able to get away more this weekend to be with the girls. It's so hard to balance the time that we have, but I know we've got to pull away a little bit for everybody's sanity.

It continues to be hard to describe all the things going on medically and there are so many issure. Just appreciating the continued prayers for him getting stronger and healthier and if God's plan is for him to have the BMT that it will all fall in place (sooner the better wouldn't be bad either).

Everytime I buzz to come back through the doors, I pray it will be the moment that I find Randon, receiving his miracle. Thank you for praying that with us.

Have a great holiday weekend and be careful (Can you imagine all the accident/injuries we see up here?). Of course, cherish every moment!

Thanks for holding on with us
Carol

Wednesday, August 30, 2006 5:03 PM CDT

Randon has had yet another uneventful day. He's feeling better as he's was crying and awake all morning. I cant stand to see him crying...it's so pitiful, you can't hear him because of the breathing tube, but you can see him just screaming. His temper is definitely back which has to be a good sign.

No new plans today, still just waiting on him to get better everyday. They are weaning him off the vent again. Please pray this goes smoothly (and quickly for me). They are going pretty slow right now, but will pick up if he continues to do good. He had great blood gases today and all his vitals have been good. His biliruben is still not buging, which is more of an issue before transplant. There continues to be fewer white coats in here, which I think is always a good sign. Randon has not been the most critical around here lately, which has been great for us.

Dale still comes down every night. We then go to my parents house and pray the phone doesnt ring. The night before last, it rang around midnight. It was my sweet niece at the ER for appendix attack (my sister said she was just jealous of all the attention we've been getting). Then last night, an email came through Dale's blackberry around 2 (I think) and it sounds like a ring, so again I about jumped out of my skin. It's always hard to leave here.

My friend Isaiah had his surgery this morning and is doing well. It seems they are going to be here awhile as well. I'm not glad about that but glad to have a friend here and someone to help get through these difficult days.
I also told myself that this time I was not going to get to know anybody else up here (it's just too sad) but the cutest little 3 year old moved in next door and I could feel that he had some sweet parents. I met his mom this morning and they could use some lifting up as well. They think he may have a brain tumor and are just waiting for test results. They also lost their first child and have an 11 week old. There must be a reason they were put right next to us.
This is an incredibly sad place and I know I dont' have to keep reminding you to cherish every moment and as one of you shared with me, live in the moment and cherish every day we have. There are so many needs but so many things we can do to help.

Thanks again for checking on us and for the continued prayers. We continue to hold on to hope. One doctor said we are climbing a mountain, but with all the support and prayers, I believe we can get to the top!

love,hope and courage
Carol

Tuesday, August 29, 2006 4:14 PM CDT

Today has been another good, uneventful day. He hasn't done anything 'scary' today. No one knows what caused the fever and problems yesterday but it went away as fast as it came. Dr. Shankar one of the doctors we had before, asked me today, "don't you remember the world of ICU?" Unfortunately, I do remember the rollarcoaster.

The plan is start weaning off the vent again. It kind of depends on which doctor is on as to how fast it will happen (that is my take on it). Randon has been very sleepy today, which hopefully is just him resting from all the vomitting and fever from yesterday.

Catrina has been here the past two days, but leaves for New York for vacation tomorrow. How dare her. We now have a new primary night nurse. Guess what her name is....
Hope. I guess it's fitting that after Catrina there should be hope!

I've had a good day emotionally. One doctor that we haven't even seen very much commented that he always likes it when he sees "Mrs. Miller smiling." I realize how much my face says it all sometimes. So far, I haven't cried today. I could very easily, but I'm doing better with focusing on the positive. God has placed me once again in this God forsaken place and while I don't understand the reason and I thought I had learned everything about appreciating life last time, here I am. There is much sadness all around me and it all seems in the big picuture that it doesnt make sense why we are enduring this again. Yet, someday I'll be able to share conversations I've had, people I've met and things that have happened that I believe have happened not necessarily for a reason, but have a purpose. At least this time, I'm more aware of how little control I have and how I have to completely and constantly be aware that it's in God's hand.

The night Randon was born I tried to tell myself I was not going to get so attached so it wouldnt hurt so bad when I lost him. What a joke. I can blame the fact that I was just coming off all the drugs they gave me. I'm as attached as any mother could be to her child. I love him, I hope for him, I dream for him and I think he's just as perfect as any baby I've ever seen. As I'm incredibly saddened by the fact that I can't be there like I want to be for the girls and this year is not going at all like I had planned, I get to spend this time with my son. Somehow, will get through. Some moments are better than others, praying for more of the better moments. I can't wait to get back home and back to my family. I miss my job, my job of caring for my family. I wasnt ready to give it up, but I know I will get back to it.

Once again thanks for all the support. Thank you for continuing to pray for Randon's miracle. He is so sweet! We've been so encouraged by so many of you and your kindness. I'm way behind on thank yous but please, please know how much we appreciate everything thats been done for us. I continue to emphasize that we do not need anything but your prayers and appreciate them so much.

Still holding on tightly
Carol

Monday, August 28, 2006 8:56 PM CDT

I'm once again very hesitant to put into writing all that has happened today as everything completely changes so fast.

First of all, someone left a note that they prayed the pulmonologist would be wrong. That prayer may have been answered. After a weekend of hearing the ICU docs, radiologist and pulmonary feel certain it was the CLE disease, they seemed to have turn that thought around today. The pulmonologist and radiologist went back and reviewed everything and now feel that that diagnosis is not likey and this may once again be an issue with his lungs that could resolve itself and his chest x-ray looked much better today. That was great news. The other diagnosis left us backed in a corner with not many options. This is definitely our answered prayer and miracle for the day!!! They are still not 100% sure what is going on, but there is not talk of surgery or tracheostomies right now.

Having said that, the rollarcoaster ride continues. Randon spiked a fever last night, started vomitting, blood gases got bad and all his sats dropped. Things got scary again and everything pointed to infection once again. However, tonight, everything is seeming to go back in the good direction with all his vitals now back to where they were and his blood gases improving. Cultures are all negative and no one has a clue as to what caused this episode. It was a very scary and long day, but things once again seem so much better tonight. They had to go back up on his vent settings and the weaning process has almost completely stopped. We are praying for a much improved day tomorrow and perhaps some insight as to what caused this episode.

Thanks once again for all your prayers and support through this last valley. We are just never sure what is a bump in the road and what is a road block. Praying for only bumps!!

It's late and we need to decide if he is stabled out enough for us to go to my parents house to sleep or if we need to stay here. Hopefully, I will be able to update more info tomorrow.

Thank you for continuing to intervene with prayers on our behalf.

love, hope and courage
Carol

Sunday, August 27, 2006 2:17 PM CDT

This is one of those updates where I do not know where to begin or even how to put into words all that is going on.

It's been an extremely emotional and rollercoaster weekend. I havent really even been able to explain to my own family what is happening. On Friday, it seemed everything was so positive. Randon was getting better in every way and we were back on our road to getting him transplanted. One ICU doctor had barely left the room with such promising news, when a pulmonary doctor walked in the door and changed everything. The so called mucous plug and inflation issues according to him, presented as not just a little something that would get better, but as another rare congenital (something your born with) disease called lobar emphysema. We were sent for a CT and while this still is not confirmed, it looked "concerning" for the disease.

So, normally, the treatment would be a surgery that would remove part of the lung causing the problem.
A child in Randon's condintion, recovery from a severe acute illness while having a serious primary disease, probably couldn't survive such a surgery. And, if he did, how could we then get him back strong enough to undergo the bone marrow transplant to fix the original disease. There are talks of trachs and surgeries and all this information being thrown at us. I've had a moment where I thought this is absolutely more than I can handle. In a manner of seconds, my heart went from joy and more hope, to utter devastation. In the meantime, one of our primary doctors came in and reminded us that we do not have all the facts yet. I dont think they were pleased with us getting bits and pieces of info without putting the entire picture and heads together.

I don't think we are out of hope and I know that I'm not ready to give up on this tough boy. Having said that, I feel I'm at the point where you just wonder how much more your heart can take. To watch this baby come so far and look so good right now and then get hit with another rare and difficult diagnosis, well, I don't think I have to explain. I had my moment of complete breakdown and then I realize that my child is completely in God's hands. I've surrendered him and I know I can't fix him. He continues to need the mercy and grace of God's miracle in his life. Tryng to make any of it make sense is an impossible task. Being willing to accept whatever comes ahead is my most difficult task right now.

We left here yesterday and went to Riley's soccer game at Greenwood. It was hard to break away but I needed to get out of this place. It was great to see my soccer mom friends and feel your love and support. It was also great to see my children and my home. A reminder of all the good in my life. While I want to ask God where in the world is He right now and why has He completely removed His face from me, I could see him in the kindness that has been shown to my children and my mom..the help we've needed to keep their lives normal and to get them where they all need to be. Whether it's to school or practices or just keeping our yard mowed (thanks Tim), our friends and community have been my source to keep believing. The only explanation for how I'm still able to stand everyday has to be the prayers that have gone up for our family. Dale has been this incredible rock who has to be there for all of us when I just want to fall apart and I pray that he is really doing as well as he presents that he is doing. So please don't tell me how strong I am. I'm not strong just because difficult circumstances have happened in my life. I'm strong because I have these wonderful 4 children who need me and I don't have a choice, I have to be there. Figuring out how to be there for all of them is the most difficult. I worry that my time with Randon may be limited and I constantly want him to know and feel that his mommy is right there beside him. Yet, I don't want the girls to need a mom whose not there either. I know that we are getting through this and by God's grace, we are actually doing a good job at it. It just doesn't take away my severe heart ache and sadness.

I think that I am saying all this to say how much I appreciate all of your support, prayers and kindness that you've shown us. Whether it's been a sweet note on the guestbook or a precious little picture that you've drawn for us (Thank you Will for our newest one), or giving the girls a ride, it makes a difference and gives me the hope that no matter what happens we will get through this.

We will know more in the next day or two when the weekend is over and all the doctors put their heads together on what options we have. We continue to ask you to pray for a miracle of healing in Randon's life and for wisdom if we once again have to be faced with those how far do we want to go type of decisions. Our pastor prayed last time that the decision would always be clear, and we continue to pray that.

On a good note, Catrina was here today so we actually slept in a little and I think we both feel a little more rested. We even took the time to stop at Starbucks (Gabby, I had a half caff) and just taking a break from all this intensity. I know misery loves company, and ironically our friends from church, the Buchanon's are here right across the hall with their son Isaiah. Please keep them in your prayers as well. I'm not glad they are here but it is a little nice to have a familar face and friend who understands the life we're living right now.

continuing with love, hope and courage,
Carol

Thursday, August 24, 2006 3:29 PM CDT

Randon is continuing his baby steps to progress. We've had another uneventful day which I'm always thankful for. Earlier today, I felt the plan/goals were to slowly wean him off the vent and continue getting the fluid out. He continues to tolerate tube feedings so far and all his "numbers" in terms of blood pressure,oxygen, etc. are good. Howevever, the mucuous plug in his lung is still there and his left lung is overinflated to compensate for the underinflated right lung. This is not causing him any problems, but the doctors seem to have differing opinions in how fast he should come off the vent. The one here this morning feels like we should go VERY slow yet the one that came on later today came in here and acted like he wanted to get him off, very soon. That creates a little more drama for me than I'm comfortable with but hopefully it will all resolve.

Catrina comes back tomorrow and Sunday. If Randon is doing as well as he is, I would love to get away to the girls a little bit. I would feel confident with her here. I would love to go home, to our home, just for a little while. At night, we are staying at my parents in Nashville. It's the next best thing to home.

I could go on and on about all my feelings and what it's like living like we are. But it's so hard to even put into words and to be able to portray an accurate picuture that really fits. I told my good friend this morning that I'm trying really hard not to feel sorry for myself. She assured me that there is enough people doing that for me. Our situation is terrible, but there is always worse. I don't believe God chose us because we are strong and don't feel comfortable when people try to tell me that. Children like Reid and Randon come into your life not because we are strong and can "handle it" but perhaps because we need courage and strength that only they can give. Any good that is in me now, God sent to me through angels like them. I don't regret for a second being the mother of either one of them and wouldn't trade them for anything. I would have much preferred to have had healthy children, but I'm so in love with each of them. I loved/love being their mother. I'm just always so sad I can't "fix" them and I can't take away their pain. I'm blessed that I can be with him during this time. I dont have to worry about losing my job, right now, he is my full time job. I'm fortunate to have family that are able and willing to help. I dont know what I would do if I didnt have that kind of help. And I have a community of faith, like you, that have been there to love and support us through this. That doesn't mean that everything is just great, because I'm still really hurting and really struggling. However, there are always the blessings that you have to continue to be thankful for.

I'm not sure how I feel about God choosing me to be the mother of Reid and Randon. I don't pretend to understand God's ways and how much he "chooses." I do know that this path is not the path I would have chosen but the path I must accept. I have to work harder to smile and my time between crying is gotten longer. I have no idea of the road that is ahead... but none of us do. I continue to pray for strenght, for peace, for God's love to be evident, for hope and most of all for a miracle in Randon's body and in Randon's life.

love,hope and courage

Wednesday, August 23, 2006 3:47 PM CDT

I wanted to try and update a little earlier today. I looked up and saw the clock and became thankful that another day is passing by.

I don't have very much new to report. I'm assuming by the fact that Randon got paired with another patient today (sharing a nurse) that he must be pretty stable. I've hardly seen the nurse much in here today and there have been no "white coats." That has to be a good sign. The only doctor that came in today actually (Dr. Shankar) said he was just on a "social" visit checking on him. His wife is our oncololgist. So, I think we are still fairly stable. Now, since off all the drips, his urine has slowed down too much again. His kidneys are working fine, just not enough to get all the fluid off. His belly is still very, very swollen. So far he is tolerating the tube feedings but on a very small amount.

They are also pressing on with the plans to get him off the ventilator. Of course, I'm extremely nervous about this. They decided not to do the bronch and see if he can get rid of the mucous plug on his own after extubation. I'm very unsure about this, but trusting that they wouldn't try it if they didn't think he was ready. He's been breathing over the vent a lot and they are ready to wean him off.

It's been sort of a long, lonely day. Catrina was off and we've had a new nurse. I'm so biased towards her I'm probably not giving anybody else a chance. I can't describe how great this girl is.
She is constantly watching his every move and takes initiative to do things. Yesterday, she kept watching his blood pressure and when it was doing so well, got him off the dopamine.
Everyday she seems to kind of set a goal for him. She's inspiring just to watch. She will be back on Friday!

I feel like I need to get out of this place for awhile but cant seem to leave him. Dale and I leave here at night around 10:30 or 11. He gets up early and goes to work and I come back here at 8. I hardly know what month it is. The days run together. I do know that one week ago today it seemed like we wouldn't have him much longer. I'm looking to the big picture of all we have to be thankful for. This place is a reminder of how sad life is. You all are a reminder of how wonderful life and people are.

Continue to pray for his complete recovery and for the big miracle of bringing him home safe and healthy. His sisters sure would like to get to know him. Everytime Reese gets on the phone the first thing she says is, Is Randon all better? I long and pray for the day I can tell her yes and bring him home. Last week when I didn't think he would make it, I decided that I wouldn't be nursing him anymore. That was really sad for me but I knew I couldnt have the stress of pumping every 3-4 hours on top of everything else. I know you moms who love to breastfeed understand the process involved in stopping cold turkery like that and how I had to mourn that I never really got the joy of doing that with him. There is enough milk here to last him for awhile. I could mourn a lot things that I'm not able to do with him now...mainly holding him. My arms literally ache to cradle him.
But if I've learned anything, it's to accept the path thats been given us and continue to be thankful. I'm not the perfect mother by any stretch of the imagination and I never want to give the impression that I'm just this pillar of strength that fully relys on God. You know I've had my struggles and I continue to have them. But this time, I feel more peace and confidence that we will get through this. I've learned before that without suffering I wouldn't know compassion and without trials we couldn't possibly begin to understand whats important in life. I'm thankful that no matter what, God gave me just the husband I needed, incredible daughters and two amazing boys that have touched more lives than most of us will ever be able to. I don't always believe that there is a reason for everything, but I believe everything happens for a purpose. I pray God really reveals to me the purpose in all our trials.

Praying for the big miracle and holding on to hope,
Carol

Tuesday, August 22, 2006 5:19 PM CDT

(new picture of Randon on the photo page made right before our trip to ICU. His outfit compliments of his NICU nurse Justy...Misty, we are still waiting)

We've had another fairly uneventful day. It's very hard to know where to begin to describe him medically. Dr. Osama is the one who says he has no explanation as to why he did not go into full acute respitory distress syndrome the past week. He also wants to now wait on the bronch scope. It has some risk and he does not want to do anything that might make him worse. His x-ray has gotten a little better but still affecting their ability to wean him off the ventilator. So, it would be great if the mucuous plug would go away without the bronch. They will have to do it in a few days if not. Since its not causing any respitory problems right now, they arent' going to push it. For all my medical friends, the big news today was that he came off the dopamine which means he is regulating his blood pressure on his own. This time last week he was on the highest dose (18)of that plus one other blood pressure med.
They are all still amazed with his progress. Having said that, then they always remind us of how far we have to go...and thats just to get back where we were. On Monday, I was really feeling sorry for myself thinking things couldn't get worse..well, guess God has taught me to be thankful for what we had. When we get back on the floor, I will have such a better attitude! I need to be thankful for everyday he is still with us and stable.

They also started him back on tube feedings today. Getting his belly size down would really help. His head and extremeties are back to normal, but the stomach is even bigger than it was before. They had to slow him down on the peeing because his base (too alkaline)and potassium were so out of wack. His liver enzymes are even better than they were before he got sick, but the biliruben level is not budging. His liver may even be a tad bigger. So, you can see that we still have a long way to go, but how far he has come in a week. Catrina was back today. She is so incredible. I give her so much credit for how far he has come. I'll have to tell you all more about that someday.

ok, the ICU doc on today just popped her head in and said he gets the award for the best behaved patient in ICU today!!! Finally some good news from their lips (they keep you prepared for the worse) To tell you how critical he was the red pod is for the most critical and in there they put the most severe right across from the work station....that would be right where Randon is. Who knows, they may move him after today.

I continue not to get my hopes up, yet I have to believe in Randon as well as in God's ability to take care of him. It's not that I don't believe God is able, it's just after Reid, I know too well what it's like to go through the ups and downs with a not so happy ending. I've asked God for the whole thing...the Big Miracle... I ask for it all.

We will never know what exactly happened last week that caused this acute episode. However, I know there is a reason that we aren't to know. In the meantime, thanks for continuing to pray for our miracle, for him to be able to get off the ventilator soon and for his liver to reduce in size and do the function of a liver, not the bone marrow.....basically for his whole body just to get better.

I'm honored you would continue to visit us and encourage our family. The greatest part of all of this is seeing all the good in people...even those we've never met. I enjoy your entries on the guestbook and appreciate your willingness to share in this storm with us.

Dale is still coming down every night and gets up early to head back to Bowling Green every morning. It sure is a long day without him, but we our surviving and appreciating each other more every day.

Praying without ceasing
Carol

Monday, August 21, 2006 10:50 AM CDT

I came back to an almost new baby today. When we returned from soccer yesterday, he was over 500 negative (that means 500 ccs out more than in). His head was almost back to its sweet normal size. Today was my first morning to have to come through these ICU doors without Dale, but very thankful the little man was stable enough for his daddy to go back to work today.

I'll try to back up and explain a little more of what all has happened. He had some type of acute episode early Tuesday. It appeared to be a sepsis infection. However,nothing has been grown from his cultures. We found out Saturday, that the original blood cultures taken before antibiotics were started broke in the tube (transport to the lab) and now we will never know exactly what happened (if for sure infection and what type). So the culture they were trying to grow was blood 12 hours after antibiotics.

On Wednesday morning, we knew things were bad but I don't think we fully recognized. Thankfully, our Pastor Steve and our dear friend Dr. Dermody were here to go with us to one of those "how far do you want us to go" type of talks with no less than 14 people in the room. They offered us one type of last hope type of procedure where they would put him on dialysis to do the work for the kidneys so that they could get the fluid off before respitory distress was full blown. We felt clear that we had to try this procedure. They gave us a 50 percent chance of doing the procedure and 50 percent chance it would work even if they could do it.
Several hours later we received the call that they tried for 2 hours but could not get the cathetar in to perform the procedure.
Now I realize that them not being able to get the cath in was Randon's way of telling them that he needed more time (even though the doctor's didn't think we had time). They saw that his kidneys were starting to function somewhat on their own and tried and dieurectic drip (can't remember the name, but very hard to get evidently). After yesterday, he was doing so well they put him on straight lasix. And this morning, the output is so well, that they even stopped that. The fluid is really coming out. It has been so heartbreaking to watch Randon endure this. I can't begin to describe the amount of swelling. Even his ear lobes were almost unrecognizable.
Today, he is so much better. HIs blood gasses, blood pressure and oxygen numbers are all doing well. The plan continues to be to get the fluid off and talk of moving towards getting off the ventilator. We have one issue with this they are going to address today. They have found some type of spot on his right lung in the chest x-ray. They thought/think it might be a mucous plug but have had no luck suctioning it out and have tried several things. Today they are probably going to do a bronchial scope where they go down his breathing tube with a camera and try to see if they can tell more about what it is or if it is a mucous plug, try and get it out. Please pray about this and for him to be able to get off the ventilator soon.

I've learned so much about trust, believing and fear this week. Going through this twice is unbelivable as I'm sure you can imagine. Bearing to lose another child is beyond my comprehension right now. However, I do believe and trust that no matter what, we will have the strength to endure. We know it doesn't come from ourselves but from the prayers. Lately I've asked God to please speak a little louder. Perhaps I'm learning to speak a little softer. Right now I think I'm as broken as I can be, but I definitely feel the love of my husband, my children, my family, my friends, and most of all from my God. There is no other explanation of how all the events of the past week have unfolded and all of us are still here, still standing and still fighting.

Thank you for continuing to believe and support us through. Randon has taught me a few things about giving up on him and hopefully he's taught some of the medical people here the same.

We enjoyed our time at soccer with our family yesterday. I think my body was in shock from all the vitamin D I got being outside. It seemed so strange to be at a soccer game while my baby is in ICU, but I know my other children need me to. I'm thankful for the type of day we had.
It was also hard today to return without Katrina (our nurse from heaven). Katrina may know Randon better than I do and I couldn't begin to describe what it's been like having her for a nurse. She was so in tuned with every little thing about him that with the slightest change she was right on top of it. Please pray God will send others I can have that much confidence in as I know she can't continue working 8 days in a row of 12 hour shifts. Oddly, two of the best people we have found here in ICU have been named Katrina and Osama. Normally I guess those names have been associated with not such good events, but they've been so powerful for us.

We appreciate your continued prayers. Thank you for the support. I pray for my miracle hourly and know you are too.

Believing,
Carol

Sunday, August 20, 2006 12:37 AM CDT

Randon is having such good day that we are sneaking away to go to Reagan's soccer games.

He has improved so much that doctors come in and actually use words like "great" and "wow." In fact, they are taking him off the drip for his kidneys because he is going so much his potassium is staying too low.

He already looks so much better and the fluid is really coming off. They had to give him so much volume the past days to keep him alive and his kidneys weren't working so they knew it would send him into multiorgan failure.
His numbers are so much better (and there are A LOT of numbers they are looking at)

Of course we aren't out of the woods, but we are breathing so much easier. Thank you for your faithful prayers and for continuing them. I can't explain how much we feel them.
I know we don't talk to many of you right now, but we feel you...we feel the love, support and most of all prayers.

I continue to have so much to share, but no time now. We are off to soccer.

So much love and apppreciation,
Carol and family

Friday, August 18, 2006 9:40 PM CDT

I just snuck away from my little pumpkin to update.'

There is so much I could share about what is going on, but not enough time and I'm not sure I could put into words how to describe the adventure we are on right now.

Things change so quickly that by the time I finish this update, everything could be completely changed.

I know you totally understand my total exhaustion. My heart is so touched by the outpouring of love, support and prayers. I really do not know how I'm walking but I know that your prayers and support have helped so much.

Randon is fighting. He is fighting hard. It's the most heart breaking thing to watch and feel so helpless in helping him. His kidney function continues to improve, slowly, but improving. One doctor told me today that has swollen and fluid filled as he his, he can not explain why it is not in his lungs. (we all know why, right) So, please continue to pray that his lungs can hold off all this fluid in his body until his kidneys really pick up to get it out of him. He had another "spell" as I call it tonight that was scary but seems to be stable at the moment.

God has placed the most wonderful nurses and doctors to our care. We have the best day nurse. We have had her everyday and will continue to have her through the weekend (she says they never let her work that many days in a row, but we know why that is too). I feel confident that everyone is doing there best to help sweet Randon. We have most all the same ICU doctors as before and they have been great.

The difficulties continue to mount. But Randon is as stubborn as I am and I know we will all continue to have the strength we need to get through each moment. I can't even begin to know what God's plan is for all of us through this, but I pray it will be fullfilled whatever His will may be.

I wish I could share more but I know I need to spend every moment I can with him. Thank you for your prayers.
Dale went home and to work a little today and is back tonight. If he is stable enough, we leave at night and sleep at my parents.

I know you know this, but be thankful for every uneventful day and pray for all the families here with their precious children.

Holding on to hope and expecting a miracle
Carol

Thursday, August 17, 2006 12:27 AM CDT

I just got a call from Carol with an update. Randon is doing much better today than they had expected. He seems to be fighting off the infection. The kidneys are working some - there is some urine output- not enough but they haven't shut down. Plus he is getting less volume of all the stuff that was keeping him alive so that is great news for the kidneys. His respiratory issues are improved as well. Praise God for this good news!! Please continue to pray for a miracle. They stress he is not out of the woods yet, but there has been some improvement. He is still in ICU and will be for a while. Carol and Dale can not recieve calls or visitors and have few opportunities to get away to make calls. Please be patient and understanding about that and do what you can do for them which is to pray, pray and pray.
She will update us as soon as there is anything new to report.
Carol's sister,
Shannon

Wednesday, August 16, 2006 7:08 AM CDT

we are on our way back to the hospital after staying at my parents last night.

They believe Randon has a sepsis infection that is taking it's toll on his body, especially his liver and kidneys. It came on very fast.

He is in ICU and I know I don't have to describe how dire everything looks right now.
They insisted we get some sleep last night so that we would be in a better frame to make decisions today. It's incredibley heartbreaking. I wont be able to get to a computer today or even a phone, i'm going to spend my time with him
Shannon should update if there is any news.
Thanks to all of you for all of your prayers and support.

Still needing a miracle
Carol

Tuesday, August 15, 2006 8:29 AM CDT

Dear Friends,
After a pretty good day yesterday, Randon has taken a turn for the worse and is really struggling right now. He has been moved into ICU. Carol and Dale are asking for two things: prayer and privacy. They are not up for visits or able to handle phone calls right now. There is nothing they can explain - the doctors are unsure what or why this is happening. It is just wait and see.
Please petition the Lord for a miracle and please pray for strength for Carol and Dale right now. Someone will update the sight as soon as there is any news. Again, thanks to everyone for their continued love and support and prayers!!!
Carol's sister,
Shannon

Monday, August 14, 2006 3:31 PM CDT

We have had a fairly good couple of days. Those of you who followed us last time probably remember our two favorite nurses Mollie and Misty and the dilema of which to name our dog after. Well, we went with Mollie (Misty is a pony's name). Mollie has now married and moved to Alabama, but Misty works 4 shifts a month and we got her yesterday. Because she was here we left Randon and went to see the girls and my parents for awhile. I can't say too much about Misty because she reads the website and if I brag on how great she is she might get the big head. The circumstances are horrible, but I'm glad our paths have crossed again. I know we won't be able to have her too often, but yesterday was nice. She and Dale have the same warped sense of humor so they had lots of laughs.
We've also met Mollie's sister who is now a nurse up here.

My good friends Michelle H and Gabby came down today. I have been feeling very weak and sick lately. It's hard to know what's from stress, depression or just giving birth. Michelle went with me to see the doctor here that I've been seeing. My blood pressure (which had been very high and I've been on lots of medication for) was actually too low. That would explain why I have felt so bad. They were able to cut the blood pressure medication I'm on in half. Hopefully, I will continue to feel better physically. They also took more blood last week and said my iron was starting to come back up. Dale is bringing my tennis shoes and some shorts back here and hoping we can sneak away some to run or walk and I can get some exercise.
It was good to see my friends and have a little conversation for a while.

Randon has had an ok day. He continues to be very stable but his liver functions still need to improve a great deal. His liver and spleen are not getting any bigger but they were hoping they would get smaller. They even mentioned that they may have to remove his spleen. Any type of procedure scares me. The idea of having an operation like that before the transplant is worrisome, but I'm learning to let the fears go and try harder to trust. I prayed for some good news today, and alittle while later I noticed Randon eating his hands. So, I tried a bottle and he sucked down quite a bit without any problems. Getting him to eat by mouth would be such a blessing so it was wonderful to see him do that. I'm still pumping every 3-4 hours which is hard but I know it's the best thing for him right now. I'm so anxious to get the new marrow in him, but know how dangerous it is. Chemo can be toxic on all major organs, so they've got to be in good shape. The doctors have commented that he looks like he's starting to fill out some and he has gained some weight. He still requires platelet transfusions daily and blood every 2-3 days. He seems pretty strong to me and sometimes he seems so good I just want to put him in a car seat and take him home. Praying for that to happen someday.

I've enjoyed all your notes on the guestbook. Can't believe how word travels sometimes. I've heard from old sorority sisters and high school friends..it's just amazing. I love hearing from you and continue to be so incredibly appreciative of all your prayers and concern. I know it's how you get through times like these. Every morning when I wake up, I still can't believe all this is happening....again. God's will for our lives surely doesn't make sense, but we still believe. Thanks for sharing the great lyrics on the guestbook, I dont think I had heard that song but really enjoyed them. I'm working hard on fighting the depresssion and focusing on our blessings. They are often hard to see and feel sometimes, but it's not always about feelings. I try not to let my feelings take control, because I often do not feel too good or happy. I'm still grieving my healthy son I planned on having by now (my due date is almost here) and everything is not ok and I know my freinds don't expect me to feel like it is. I work hard, very hard to smile. But I'm confident that our family will once again survive this. I now know why Dale and I found each other. His calm in the storms and his love when I feel so unlovable are just what I need to help me face each day. I know God's love is the same, I just need to learn to trust it and keep believing.

love,hope and courage
Carol

Saturday, August 12, 2006 4:12 PM CDT

We are having a fairly status quo weekend. Nothing new medically really to report. Our biggest issues seem to be that his biliruben levels are still not coming down but the liver enyme numbers are (that's good) He's back on breast milk and trying to wean back off the TPN. He still won't nurse or take anything by mouth. Other than that,we are still wanting him to grow and improve and pray that lung isssues are not part of his mysery disease. I feel that is sort of the concern/thought hanging out there. All the doctors still come to see us quite often and have many questions about Reid or having recollections that weren't exactly right, I finally asked if they could just send Reids' chart to put up here by Randon's.


Weekends are always so much better. I stayed at home last night and hung out with the girls today. Now Dale and the girls have gone to see Talladega nights. I should have gone with them but just really wasn't up for a movie, even though I'm normally the first one in line for Will Ferrell. I Knew I wouldn't be able to enjoy myself. I enjoyed getting away but felt comfortable with Dale here but he really needs to sleep in a regular bed. He's very stubborn. Have I mentioned lately how wonderful he is? He continues to be the rock while I feel like I'm the wavering wind. I'm trying to find that line between being positive and optimistic or peparing myself for the worse. I know I realize how sick he is and what an uphill battle we have. so I try to focus on enjoying him. He's like a typical newborn in many ways. I need to be thankful for the time I have with him and believe that even though it seems impossible now, I know that we will all survive this somehow.

We contine not to need anything..have I mentioned that? Your cards and notes are always encouragine and remeber that just because you don't hear from me doesnt mean that your kindness has gone unnoticed.

I remember reading these words that were found on the wall of a concentration camp:

I believe in the sun, even though it doesn't shine
I believe in love, even when it isn't shown
I believe in God,even when he doesn't speak.
I pray to have eyes and a heart to see the unseen like the person that etched those words in the midst of such horrendous times.

holding on and believing
Carol

Thursday, August 10, 2006 7:14 PM CDT

I just typed an entire update and somehow it disappeared. i must have put something in there that wasn't meant to be out there. Very frustrating.

We've had an ok day. Like usual it seems like one forward and 2 to 3 steps back. I can't describe how disappointing and just frustrating almost everyday is. As far as the liver, the enzyme functions were down again which is good and the biliruben level that was comng down went way back up. this is not the type of biliruben where you can put him under the lights. Hard to explain. Then they've given him some medication they hoped to help (actagal) and it seems to have causes severe intestinal problems. so, once again they've stopped feeding him (He was losing weight from the diahrea) and he's back on TPN, which can be hard on the liver. it's so frustrating. Everday there is another issue. I'm trying so hard to keep it all in perspective, but it's incredibly hard. i expected this as it's exactly how it was with Reid. But I realize it doesn't make it any easier. I'm working hard everyday to make myself smile but it's so hard. I'm very aware of the depression I'm fighting and I know you understand. Not only just the heartache of how sick he is and what a battle we have ahead, but I'm still depressed with the realization that this must be genetic. Reid and Randon's blood have been sent to Boston children's hospital to see if they can find a genetic marker. If so, they at least will probably be able to discover if the girls are carriers. That is what also I find completely devestating..if I've passed this on to them to face someday.

it's a completely sobering experience. I"m trying to focus on all blessings and good that are in our lives, but it"s difficult to look beyond the dark clouds right now. I know you understand with all I'm dealing with why I haven't been up for much visiting. I just have so much on my plate and right now I dont see anything that will make it better. Learning to continue on in faith and accepting a path that's been chosen for me is all I can do right now. My faith has not been weakened but I won't even pretend to try and wonder all the whys and ifs. Some moments I truly believe I have burden that is too heavy to carry right now, but I'm reminded that that cant be true. Many have carried much worse and I have to believe that somehow I will emerge from this and will be happy again. I'm in the fire, but I won't let it consume me.

I'm married to such a wonderful guy. He still comes down here every night. He knows how much I look forward to seeing him after the long days here, but I know he needs some rest and time with the girls. Nights here are crazy, I'm just not ready to leave him yet at night. Thank you for all the offers, perhaps later I will be ready. Dale's such a support to me and so sweet with all the guilt I"m dealing with.

Enough about me. I really do not want to become one of those people who when asked how your doing, tells you. The girls are great. Riley seems to be loving middle school. She is in the cheetah family and has several friends there to. Soccer has been great for her as well. Reagan has been having homework, so now she is happy. She loves school and is one of those odd ones who enjoys homework. Reese is the hardest for me. We've been together 24/7 since she was born. She rescued me from so much before, but she seems to be doing well as well. I miss our home life so much.

Thanks again for all your continued support. Thanks also for expecting and believing in our miracle as well.

Holding on,
Carol

Wednesday, August 9, 2006 6:38 PM CDT

We have had a decent day today I think I've done much better and almost had a day without crying.

He had his very own personal nurse stay with him today while I went to see Reese. Thanks so much to Glenda Babcock for staying with him today. I enjoyed my time away and was so glad to see her and didn't have to worry too much about Randon. I'm not for sure why I handled everything better today, I'm sure it had something to do with getting away for a little bit. I also was very touched by all the sweet goodies that were brought by the Greenwood girls soccer families (thats when I first cried) and then something from our sunday School class.
It's very hard to once again find ourselves being the recepient of so much kindness. Once in a lifetime was plenty and now it's hard to explain how hard it is for me to be in this position again. All I can say is that feeling so cared for and receiving so much support is truly heart warming and really indescribable. It's a position I hoped to always be on the other end of, but find myself here again. You all have been so understanding and I really appreciate all the kindness, thoughts and prayers.

I continue to assure you that we don't need anything but your continued prayers. Your support is very much felt and I know a bright spot that keeps me going. If we ever do need anything, I promise to let you know. I remind myself of how blessed we are even in the midst of this terrible storm. We have family able and willing to help and great friends, neighbors and concerned communi of help. I will let some of you stay with him while I get away. I'm getting better at that.

Medically, it's just more sort of up and down. Tonight he's settled down with good heart rate and stats, so I'll be happy in the moment. I did get a chance to talk with the cardiolgist today. They are really going to watch him with the pulmonary hypertension issues. If it werent for what happened to Reid, they wouldnt think anything of what they've seen but are planning on staying on top of it. Just hoping the ph is not part of Randon's condition.

They also are just harping on him growing. I try to remind them that he was 5 weeks early and only 3 weeks old now, but they keep talking grow, grow, grow. He continues to be really cute and I'm working hard on enjoying him. I know too well that I just don't know how much time on earth I'll be given with him. So, I want to just love him every second and continue to hope and pray for our miracle.

love,hope and courage
Carol and family

Tuesday, August 8, 2006 3:15 PM CDT

It's been a litte hard for me to find a moment to update and get all the facts together.

I'm not exactly sure of the implications of the results of the echocardiogram. they evidently saw a small amount of pulmonary hpertension. No one seems to be making a big deal of it and just say he needs to stay on the oxygen and it's probably because of the size of his liver pushing on the lungs. No heart doctors have talked to us, so I'm not sure exactly what it means.

It's been a difficult few days it seems. I dont think Randon is thriving like he was. Seems we've gotten worse in terms of his breathing and liver size. He also will no longer take anything by mouth. If there is anything I love, its nursing a baby, so this is just another huge ache to me. They say he just doesn't have room because he is so little and with an enlarged liver and spleen, there is no room to te the volum of food. It also takes all his energy to breath,so he sleeps so much more. On a good note, his liver numbers are still getting better,it's just so slow. We need this trend to continue. Justy our NICU nurse came to visit today and I could tell that she thought he had gone down as well.

Medically, that is about all I know. Looks like we are still months away from transplant. I'm trying so hard to keep my spirits up, but it seems like a most impossible task. I know the girls are doing well and don't really need me, but I need them. Trying to find time to get away is difficult, especilly when 2 hours of my time away will be traveling. Thanks for all your offers to stay with him. I'm slowly taking people up on it. I've got to be with the girls or I think I will have a stroke soon. There is just no easy answer. All I want to do is either be with him, or be at home with the girls. Nothing else seems to matter.

thanks for all of your patience and kindness with me. I read all your cards, notes and emails, but for some reason I just cant seem to hit the reply button. I'm not sure why and I know I'm at a complete loss for words. But I do read everything and reply in my head. I love keepng in touch with everyone through this site and read every word you send, it's just hard to explain how difficult expressing anything is right now. Thanks again for continuing to keep in touch and for the continued prayers. I know I need more tme. The shock, heart ache and disappontment that have come with the last 3 weeks are still heavy on my mind and heart.

I love you all. I don't want to overlook anybody, but thanks to everyone for all you have done for our family.

Still holding to hope and praying to witness a miracle
carol

Sunday, August 6, 2006 3:32 PM CDT

We have had a fairly good weekend. I got away some yesterday and went home for a while to spend time with the girls. Then, my parents brought them back down here to see us today. Only 2 people are allowed back here at a time. However, evveryone was so happy for the girls to come up today, that they made some exceptions (shh) so we could all be together. It was the first time Reese got to see him. We had the opportunity to take some great picutres of everybody and even grandparents with him. Riley and Reagan both held him. When transplant time comes, I know it will be hard to get anybody back here, so glad we got to do that while he is stable.

Like most babies, his days are great and then things get crazy at night. Last night, he started one of his breathing hard episodes, then pulled his feeding tube out -TWICE which meant a chest x-ray each time to make sure it was in right and well, sleep has been little around here.

Right now the plan continues for him to grow and for his liver to improve. Chemo therapy is hard on a baby, every organ has got to be strong to handle it. His liver numbers (biliruben and enzymes)were better today (so they tell me). I'm just trying to be his mother right now and take care of him. It's not that I don't care, but I just can't get into "the numbers" games and worry with every little change. I know he's a sick baby with a lot of hurdles to climb. But, everyday I'm going to continue to wait for our miracle while they continue to wait for him to be able to transplant. Hoping our miracle comes first.

I'm trying to be positive and pray that God fill this room with life. I know when Dale leaves tomorrow, it's easy for the tears to begin and the constant heartache of all we are going through and have yet to face to consume me. I'm trying to let the could of, should of, would of's go and accept my place on this earth right now, for such a time as this.

The girls seem to be doing very well. Thanks to everyone that has helped out with them. Our friends and neighbors have been great. Riley has a ride to and from school everyday and doesn't have to ride the hot bus, Reagan has a way to all her soccer practices and activities and several have given my mom a little break and got Reese to make cookies or whatever. Please know hom much I appreciate all the kindness. We are forever grateful.

Thanks again for all the words of encouragement. Now, I'm focusing on just breathing and your support means so much. Tomorrow they are doing another echo cardiogram. I'm extremely nervous about it.

Holding on to hope,
Carol

Friday, August 4, 2006 1:04 PM CDT

I wanted to send a quick update before the weekend.

Randon had a rough night. Really the first one since he's been born. How I miss the NICU. Like Reid did, he is now having to work so hard to breath due to the size of his liver, spleen and trying to hold the feedings in addition to all the blood and platelets they have to give him. All is energy is needed for that and he has been sleeping all day. Last night his stats dropped every feeding and he couldn't handle them. It was so disappointing because he had been doing so great. They now have him on a continuous feeding pump. Hes got to grow and get good nutrtion before transplant.

Hopefully, this trick will work. I just miss his little eyes being opened today. He has slept all day. It just so identical to some of the days with Reid. I took a big nap today after being up all night and when I woke up it was like a bad dream again. I couldn't believe where I was. I'm trying so hard to quit feeling so sorry for myself and get strong and positive to handle the days ahead. I can't even stand to hear little Reesies voice on the phone. I miss her and I know she has no idea what is going on. I'm going to try and go home tomorrow while Dale stays here. He needs a break too, but always looking out for me. Soon, I may take you all up on some of your offers to stay with him. I just can't leave him after a night like last night. I just pray we have more "normal" nights and less difficult ones. It would be so easy to put my happy face on if I knew we'd ALL be coming home in a few months. But my heart aches and worries and everyday I fall more in love and attached to him. Continue to pray for our miracle and for strength to believe.

Thanks again for all your sweet notes and for all who have come over from babies Asher and Jacob and other sites. Thank you for helping me to continue to believe in the power of prayer and the importance of friendships. No matter my current circumstances, I know I am blessed. Looking beyond my situation is hard, but I know someday this will all be a memory. In the meantime, God is teaching me about where my hope is. I'm broken, weak and disheartened beyond words, but I'm holding on.

love,
Carol

Thursday, August 3, 2006 2:24 PM CDT

We got kicked out of the NICU right after I updated yesterday. they couldn't understand why I was so resistant to it. Evidently, they had 7 new babies coming in and needed the space ASAP. They went ahead and moved us to the bone marrow transplant room so we are on the myelosuppression floor. That doesnt mean we are really any closer to transplant, but this is where we will stay.

I cant begin to describe what is it like to be back up here and to see all the familiar faces I thought would be just memories. It's so hard but I'm continuing to realize I can not do this on my own. I've never been a suupporter of cloning but if I thought it was possible to clone myself I think I just might get in line. I miss home so much and I can't put into words how much I long to be with the girls.

Today has been wild. There are just so many issues going on. They want him eating by mouth more and that has been a little stressing today. He will start nurse but tuckers out very quickly. In addition, there is some concern about his liver. His enzymes were abnormal today and they are just a little stumped as to what to do. We can't get to transplant until it is as normal as possible in order to avoid the problems from the chemo side effects. they are even talking about Liver biopsy. For us, after our experience with Reid, I don't think we would ever allow him to go throught that. Praying it doesnt get there.

Eveyday I continue to pray for a miracle. That God would breath new life in him and I could scoop him up and take him home. I'm ready. In the meantime, I'm learning to accept this path thats been chosen for me. It's hard not to stay focused on how sad and completely broken I am. I am exhausted. I dwell on all that is on me and our family right now and what this has done to not only us, but my parents and family as well. To tell you just how bad I look, one of the nurses talked to Dale'sister who just turned 30. She was sitting with Randon while I ran some errands and the nurse said, "You must be big sister" She does look young, but not young enough to be my daughter, they made me feel great!

I love you all and appreciate you keeping in touch and for all your encouragement. I admit my weariness and my feelings that I don't know how I can handle another day. YOur support means so much. I had a very encouraging, although too short visit with someone today. A reminder that I am truly not alone.

Holding on to Hope and courage
carol

Wednesday, August 2, 2006 2:18 PM CDT

I had a chance to add a couple of pictures while back in Bowling Green last night. I came home last night and got the girls off to school and then came back here to Vanderbilt. I wanted to stay longer in Bowling Green and spend time with Reese today. She did not have much to do with me last night. Not sure if she's "mad" or just being her 2 year old self. I had to come back here to see the doctor about my blood pressure. It's still now down but I have no idea how to help in that way. I just cried at the doctors office too. I absolutely have no control because I usually very good at controling my emotions when I need to. I'm very out of control right now.

It was very hard to be away from him although I loved being home. The girls were both very excited about school and I've been praying they've had a good day. It breaks my heart not to be there when they get home. My mom is doing a great job but has so much on her plate right now. She too is trying to manage two households and is definitely not use to the lifestyle we go at full speed. She has already been there and done that with me and my siblings.

I got to see a couple of people last night running the girls around to soccer practice, etc. It was good for me to see some people. I've wanted to be a hermit but I know its very good for me to see and talk to some. I'm just not ready for a big crowd and wasnt able to take Reese to her open house for her preschool. My friend Michelle H took her for me. It's still just to hard to see everybody and I'm having enough breakdowns as it is.

When I returned to Randon, nothing had changed really. But I was greeted with the news that they would like to move us to the regular oncology floor. I'm thrilled that he is stable enought to do that and it would be nice to have our own room where we can sleep in their with him and have our stuff. However, it will change things a bit. Now, there is a nurse with him constantly so we are able to leave some. Dale and I were just working out a plan where we would alternate nights. Now, in a regular room, if Dale leaves here at 6 to go to work and I stayed in BG, I couldn't get here until around 9 am. You cant just leave a baby by himself when you are on the floor. I know we can't stay in this NICU forever, but in that since it's been very nice. Even if we just want to leave him to go eat, someone is always with him. It wouldn't be that way on the floor. We will work it out, just not sure what is best. Right now they are giving us a choice, but I know it won't be long until we don't have a choice.

There really isnt anything new to report. We are working out him getting the NG tube out (feeding) and taking everythig by mouth. Progress is slow, but hopefully we will get there soon. He will take one feeding completely by mouth and then nothing the next time.

I'm continuing to struggle with not losing my faith and just allowing myselfto be carried through this. I've never known such depth of heartache and such disappointment. But I still believe and I'm still holding on to Hope.

love, hope and courage,
carol

Monday, July 31, 2006 7:06 PM CDT

Thanks so much to Frieda, John and Gary, I'm now set up on my very own laptop that I can use here in the room. This will be great and I really appreciate this wonderful gesture to get me online.

I continue to be just blessed and overwhelmed with everyone's kindness and love they have shown to our entire family. Thank you for your faithfulness to us. I apologize that I havent been much for being on the phone and visits. It's just too painful and so hard to explain.
All of this is extremely difficult as I know you understand and trying to relive and explain and even just hear the voices of my friends is just hard. I am very thankful I have such great friends.

A few have asked, so I wanted to let you all know that I'm only updating this site, I haven't been sending out any separate emails or other types of updates. Keeping the site updated is the easiest for me and I know I'm leaving out lots of details, so I'll try and do better.

There is really nothing new to report medically for Randon. He looks really good and to me he acts like a normal newborn- he sleeps, eats and poops. He seems very alert when he is awake has the most angelic sleep. I love being able to scoop him up now and I pretty much hold him all the time. I'm trying to not sound like a broken record, but the days here are hard on me emotionally. My heart breaks everyday and there is nothing I wouldn't do to be able to scoop him up and put him in the car and come home. I'm working so hard to have a positive attitude and find renewed strength. Physically, all my wounds are healing. My blood pressure is still pretty high, but I can't imagine why, huh.

He is only on a litle bit of oxygen and the monitors. He is not on any medication. He requires a platelet transfusion 1-2 times per day and blood about every other day. Their theory is to keep him transfused in red cells in order to shut the liver down from tryinig to do the bone marrows job and getting it to return to normal size. My biggest concern is respitory and you know why. He only requires a very small amount of oxygen, but not sure why that is, still hoping for no indications of the horrible pulmonary hypertension. That is the worry in the pit of my stomach that takes the wind out of my sails with all the other good news around him.

I hope to get some new pictures of him. He really does look great.

Other than that, the girls returned to Bowling Green tonight. They won't be there when I go to my parent's house to sleep tonight and I just ache and miss them already. It's just so hard to be separated. They have been my full time job for years and it is a job I love and did not want to leave. My mom is great. This is no easy task for her, but you wont hear her complain or worry for a second.
I give a whole new meaning to post partum depression. I'm trying so hard to be strong and courageous. I continue to pray to witness a miracle. I want to come home with him in towe more than anything I could ever imagine.

Thanks again for praying for us and for your kindness and all the sweet notes. I should be able to update daily.

oh, some were asking..Randon weighed 6 pounds 6 ounces and was 18 1/2 inches long. My calculations were off, and he was born at 35 weeks on the day.

love,hope and courage
Carol

Saturday, July 29, 2006 4:16 PM CDT

There is a picture of Randon on the photo page. We have some really good ones that might be a little better than that one but they are all on my digital camera and not having my computer and the cord here, it's been difficult to try and add. He really does look great. The rash is much better and if it weren't for the oxygen in his nose and all the wires he's hooked up to for the monitors, you would never know anything is wrong with him.

Everything has continued uneventful for him medically, which has been great. The plan has been to get him strong, tolerating feeds, getting his biliruben levels down and the size of his liver down. He has made goog progress in each of these areas and for that we are thrilled. Staying at my moms has been going great and it's much easier to leave him when he's doing so well. Like his big brother, he already has nurses that love him so and are lining up to take him. God has blessed us with a great night nurse named Justy. I had finally been doing better with my crying until I came in Friday morning and she had him fixed in a crib with a mobile and toys and had him a little bouncy chair and some clothes on him. I realized that it was time to celebrate his little "normal" life and all the things he can do.

It's been an amazing 11 days. I told myself I wasnt going to get too personal in the updates this time around but that seems so impossible with something so emotional. The night of his birth is like a night mare that I finally have quit replaying in my head. That night I thought I really wanted to die or if he wasn't going to make it, for
God to take him before I ever saw him. It was hard to see him the first time, I didnt want to get attached. Realizing this must be genetic and passed down from me (the main theory) I felt and feel so much guilt. I would never have wanted to bring him into this world without a fair chance. I've been through a lot there is no denying. I know all the lectures about how I need to take care of myself and let others help. Being needy is not my thing and I'm not real comfortable in the role of not being in control. I'm a very determined person who doesnt rely on anyone, especially when it comes to my kids. And here I am, so completely not in control and at the mercy of so many. Next week when school starts will really be the challenge. My mom leaving her home and her life to assume mine, Dale working and driving back and forth taking on many of my responsibilities as well and me trying to figure out how I can be two places at once. It's a tough time for us. there are no easy answers or solutions and although it's not about me, my heart is breaking no matter where I am. I don't feel comfortable or deserving when everyone tells me how much courage and strength I have, because I don't. I'm doing what I have to do. With my anger issues earlier in the week I thought I would scream at the top of my lungs if one person dare tell me God won't put on you more than you can handle. Thankfully, no one has said that to me. Courage comes from those like you who pray for me and pray for our needs when I don't have the courage to do it myself. Everytime I've started to really pray and cry out to God, I hear myself saying and you've done this before and it didn't work..maybe you were doing it wrong. I admit I don't know "how' to do it, but thanks to many of you who are doing it for me.

We always appreciate your wishes on the guestbook. It's a great way for us to keep up with everybody and to know we are being covered in prayer and love. We do read them although right now I haven't had much time to respond or reply to any emails. Please know we are reading them all.

This weekend we are just hanging out. Can't describe the De Je Vu for Dale and I. At least, we have experience.
Dale bought Randon the cutest CD player today. It's the red car from the movie Cars and the speakers are it's wheels.
so we've got his music going and we are trying to enjoy him and let the worry for the moment go. His room is getting really fixed up and looking like a real nursery. 11 days ago, I didn't think I could do it. But I love him and of course my heart is now attached as if I've had him my whole life.

I will continue to keep you updated. Hopefully, short of getting the miracle I would love to witness, there won't be much to report medically. I would be thrilled if he could just contine on as he is doing now. Please pray for any pulmonary hypertension to stay completely away!

Thanks again to all. Once again I assure you we do not need anything but increased strength and your prayers, support and friendships. Next week will be very difficult for me. I'm going to try and be there for the first day of school if things are good are here. Pray the girls do well. I think they well. Reagan was suppose to have the same wonderful teacher she had last year which I was thrilled about because the less change for her the better. I just found out that has changed and I dont know who she has. I know she's probably my most adjustable, so I'm sure things will work out. Enough worrying and dreading...time to go live in the moment.

holding on to hope
carol


.

Thursday, July 27, 2006 4:14 PM CDT

I just snuck away from baby Randon for a moment to check email and post what info we have for today.

As soon as Dale left for work this morning, the flood waters began. It's amazing that I'm fine while he is here. His crazy since of humor just seems to calm everything. Of course, like last time all the nurses just love him and will do anything for him. It's also funny that many of the residents we met last time are now the attendings. It's amazing how many I still recognize and remember and they all seem to remember us (I guess we were here quite a while with a very "impressive" case..that was always the word they used). Tara, I sure wish you and Andy were attendings here now. I have more confidence this time in the oncologist and they seem more positive and upbeat this time (one of the reasons we went to CHOP last time).

This hospital is great but the sleeping room is not going to work. There is a twin bed and a recliner in all of them. Since I just had the C-section, I got the bed, but 6 foot 3 Dale can not sleep in the recliner. So, by morning we were both in the twin bed. I think we are going to go to my moms. Its hard to leave, but we've both got to get some decent sleep.

We did get some good news today. I'm not letting my heart get excited about anything, just as I will try to not get too upset with the downs. I absolutely know how up and down it is. So, it's just moment by moment I tell myself. However, Riley is a perfect sibling bone marrow match. Now, if he can stay strong and get strong enough for transplant. Our biggest concern is the pulmonary hypertension. This could once again be the big spoiler in it. I haven't asked too much because I don't want to know, but I get the feeling if the PH is part of the disease instead of a side effect, a transplant may not be an option. They have mentioned they found possible ph on his echo but too early to tell. I think that is what is in the back of my mind worrying me the most. I've really tried hard today to stay positive because I can not continue to cry constantly. I know I have to take care of myself physically and this is not the best environment to still recoop from everything but I am trying. I called my mom and had her bring the girls up today and that helped tremendously. I got to spend time with them and Riley was here when we got the news she was a match. She was thrilled.

I've been so numb the past week that prayer has been difficult. Thanks for all the prayers you have said on our behalf. I pray that I will continue to believe and to have hope. "Holding on to Hope" was one of the best books I every read and reread after the loss of Reid. I didn't realize I would someday find myself in a similar situation (a mother losing two children to the same illness). I continue to try and hold on.

much love, hope and courage
Carol

Wednesday, July 26, 2006 8:58 PM CDT

We got moved to the Children's Hospital today. It's very nice over here but we actually had a better set up over there.

We don't really have a "room." We can stay with him in his pod room, but can't sleep in there. For the next few nights we are staying in a sleep room, and then trying to decide what we will do from there. We can't really have a lot of stuff up here, but trying to figure it all out.

Today has been fine. He got a broviac line which will help so we can get a bunch of other lines out of him and hopefully be able to put some clothes on him. My dear friend Michelle came yesterday. It really wasnt like a visitor, she mostly just there for me to cry all day and vent some feelings. She got some great pictures, but I'm not sure how to share them on this computer. He only has a nasal canula and just to look at him, he looks great!

There is a lot of medical 'stuff" kind of going on with him thats just a little too hard to explain. Evidently in the five years since Reid's been born they have seen some similar things and have done some research in adults with similar symptoms. Obviously, this is something genetic although we had no idea- and 5 years ago they didn't either. And really there are still only 2 kids in the entire world that present the same symptons...my two boys. We had always been told we were struck by lightning. I guess we've been hit twice. I may know more tomorrow, not sure that it will be very good news with some of the testing, but again, this time it's just one moment at a time. I think I've prepared my heart for the worse but will continue to fight for him in any way I can.

I had a better emotional day today. Still searching for ways to cope. Dale stayed here due to the surgery and I always do well when he is here. Trying to just breath right now and catch my breath. The shock factor is fading a little everyday and I'm trying once again to accept that while I absolutely do not understand the whys of any of this, you just can't have faith in the good times. I feel hopeless, yet I know that I am not. If I don't stop crying, I may lose my eye sight completely from all the puffiness.

I miss the girls terribly already, but I plan on seeing them soon.

Again, I can't thank everyone enough for all their kindess, support and offers of help. We still are not in need of anything but your prayers and friendships. Dale had his laptop today so we were able to check the messages while Randon was in surgery. It's always encouraging. We actually were able to make light of the situation and Dale commented that little Randon was like Ferris Bueller...remember the "Save Ferris" billboards. We told little Randon he's a very popular guy already. Seriously, we do appreciate all of your well wishes and read them all.

I must get back to the little and big guys in my life.

love, hope and courage
carol

Monday, July 24, 2006 9:29 PM CDT

Randon is still at the NICU at the old hospital as a spot at children's has not become available yet. Everyday they tell us tomorrow, so I guess it will be tomorrow before we can move over there. They found us a little "holding cell" I call it to hang out in the meantime.

Today was just a day of utter reality hitting me. I must first explain, that physically I've been pretty sick tonight. I'm still very sore from the surgery and I'm on so much medication for my blood pressure, iron and pain that it is not agreeing with me. Hopefully, my body will adjust soon. I felt fairly good during the day, but have just been really sick tonight. So, sorry if this hurried update sounds crazy.

I knew my first day without Dale would be tough and it was. The flood of memories that I thought were all in the past are just like De je vu.
I had a long discussion with the 3rd oncologist and I think this one was more certain. At first they wanted to make sure this was the same as Reid's because Randon presents a little different, but as the oncologist said today he's 99.9% sure and going to move forward.

Heres the tough thing to swallow. A bone marrow transplant is our only hope. Good news, they have successfully transplanted a very similar infant a year ago. They have been more reported cases and they've learned a lot.

Of course, I continued the last few days to pray for a miracle, but today I have braced myself for the hard core truth.
I basically (if things go well) will not return home for at least 6 months. It will take at least 3 months to get him ready to transplant...that will mean getting his liver size to normal (which they seem to know more about since last time), getting him tolerating nutrition and overall as healthy and and as strong as possible.

It would be anything less than honest to say I'm not dealing with a lot of anger and utter heartache. All of my children will need me. I can not imagine not being there when the girls come home from school, have dinner together, help with their homework and get them where they need to be. Yet, how can I leave my child here in intensive care.
there is going to have to be a balance. I refuse to uproot the girls lives. This year is too important to Riley.

So many of you have offered to help with them. I know you sincerely mean it and would be there if I needed. However, for my ease of mine, we have to have a big plan where I do not have to worry from day to day where everybody is going to be. I want the girls to feel "at home" as much as possible. The easiest is for my parents to move in to our house. I will probably stay often in their house down here. I know where they will be and will be one less worry. They may need help getting them to practices, birthday parties etc, and may need some of you there. For right now, I think this arrangement will be best. Riley was just so excited to have made the JV soccer team, and I want everything "normal" for her especially at this crucial age.

It breaks my heart. It's not fair for my parents to spend their retirement this way, but I know they wouldnt have it any other way. I plan on spending at least one day a week in BG. I'm praying my Reesie cup does not forget who her mommy is.


There is no good solution, but this is probably going to work best. It's so hard to accept that once again our lives will be completely uprooted and the separation we face. I can't begin to describe my complete heartache.
But of course, we will do whatever we have to to give
Randon every chance.

I need some time to grieve the so many things, I'm grieving the baby I thought I'd bring home, I'm greiving all the plans we had for this year and I'm greiving the pure of hell of the rollercoaster ride that lies ahead. I've realized that I'm not going to wake up and this was all a bad dream.

I continue to assure you all that your kind words, encouragement and prayers mean so much. Visits are hard because I want to spend my time here with Randon and when I can't be back with him, I'm usually needing to pump (every 3 hours) or rest. When we ever get settled and I learn more what the arrangements will be like at the other NICU, it may be easier to visit then. Hopefully, I will get better physically which will also enable me to better handle the emotional. Right now, it's fair to say that I'm a mess. I'm really not trying to pretend otherwise. I know I can do this, and I'm looking to find the strength to do what needs to be done for everybody. I miss you all but I've got to get myself in a better frame both physically and emotionally right now.

I do not have any computer access right now. I will when we get moved over to the other hospital. So, for now, It's difficult to update and email.

Again, thank you all so much. Please know I have read every word of your entries on the guestbook. It's so nice to hear from you all and to hear your encouragement. Thank you for caring for all of us.

much love,hope and courage
Carol and family

Saturday, July 22, 2006 6:58 PM CDT

Thank you all so much for all the sweet encouraging notes and prayers. You'll never know how just how encouraging your words can be and to know we are covered in prayers means so much.

Once again its hard to know where to begin. Each day I think the shock factor is shrinking and I'm getting better abled to face each hour. I'm very aware of the depression, heartache and anxiety I'm feeling. Evidently I loss quite a bit of blood from the c-section and my iron has been very low which has caused a lot of weakness. It allowed me to have a few extra days here and I will be discharged tomorrow and then Randon will probably be moved from the NICU here to the NICU at Childrens.

So tomorrow begins a new journey. Dale will go back to work on Monday and the all too familiar hospital world will once again continue for me. Things are very different this time. Right now, I'm just not into the details. I'm not watching Randon's every move and analyzing every number on a screen. I'm truly placing him in God's hands this time. I'm very guarded and too aware of the rollercoaster ahead, and just taking it a moment at a time.

Dale has been absoulutley wonderful. He has never missed a beat and has been my strength and source of not being admitted to the psychiatric floor here. He amazes me. My parents and family as well have not missed a beat in taking over caring for the girls and assuring we will not completely uproot their lives.

In the big picture, Randon came off the ventilator today and on C-Pap. We tried some oral feeding and he is sucking a pacifier. The big liver and spleen are our main obstacles and source of all the setbacks.


Basically, the plan is to get him strong and to see if all his major organs are working and strong. If and when they believe he is physically strong and as healthy as he can be, a bone marrow transplant will be the only curative measure offered. We will go ahead in the next few weeks and see if there is a sibling match.

It's hard to believe right now that I have the strength for all that is ahead. In fact, I know I don't. But I feel confident that once again I will learn that His strength is perfect, when our strength is gone. Mine is gone at the moment.

Once again, please know how much I appreciate your support, prayers and kindness. We are not in need of anything. I know so many want to do something, but your prayers are very sufficient. I have some wonderful, precious friends that I have not even been able to talk to. I love you all and find myself about to emerge from the fog I'm in. Thank you for your patience. I physically havent been able to even carry on a conversation and you would never be able to understand me through the tears. It's so hard to try and explain the details and retell the story. I know you all understand and stand by me through it all.

I dont know how often I will get to update, especially when I wont have the laptop, but Im sure I'll find away.

much love, hope and courage to all of you
Carol and Dale

Friday, July 21, 2006 12:38 AM CDT

Randon Speakman Miller was born Wed July 19th at 1:20 by emergency C-section.

He's beautiful and I thank God for him.

With much heartahche, shock and disappointment, I must report that we are certain that he has Reid's same bone marrow disease.


It's taken me some time to get my emotions and thoughts together to update. We very much know that so many are praying for us and supporting us through this difficult road ahead.

I don't know many details yet or even a plan. We are waiting to discuss with the hemonc doctors.

I will try to keep you updated as much as possible. I'm on
Dale's lap top and I just have not had the words or courage to know what to say. The c- section, in addition, was difficult for me and I'm trying to
get myself physically better while dealing with the emotional.


We continue to believe that nothing is too big for God and we must trust the plan ahead that he has for us and for Randon's life.
Thank you for all your friendhips, love and support. I know we need them know more than ever. I'm not much for talking on the phone right now but I know that you are there and I feel your prayers. Dale as well as my sister know how to update so between the three of us, I hope to keep in touch. I have a wonderful supportive family who are taking great care of the girls. Please pray for all of us.

love,hope and courage
Carol and Dale

Monday, July 10, 2006 9:52 AM CDT

Update Wednesday... I had a good report today. I do have a lot of fluid but they do not think at all that it is a problem with the baby. In fact, part of the problem is that I have a 6 pound baby already. He was swallowing and his belly was full, so I feel so much better. I'm going to be checked twice a week now and hopefully will make it 3 more weeks!! The extreme uncomfortableness is being caused by having the maximum fluid and a big baby and all the pressure on my normally small-medium size frame.

thanks for all the prayers. I feel so much better, but still need to take it easy for awhile and it even hurts to sit up and get on the computer. I'm at my sisters and she and my mom are big helps...espcially with wild woman Reese.
I will update if any changes. Thank you all so much!!




We had a GREAT weekend. The Lemonade Stands were a huge success and it was just a wonderful time getting to know more of your neighbors and being so touched by how generous everyone is.

Riley and her friends worked so hard. She was out there at 7 am and would not even stop for a lunch break. We made her quit and close our stand down around 2. I think all the kids involved found it a rewarding experiences.

She had a few stands less than last year so we are just a little over 2,000 dollars from raising total what we did last year. Riley really wanted to match it, but she has to be thrilled with how much has been raised. In our neighborhood alone, they raised right at 2500.00 Not bad for free lemonade. The kids worked hard perparing as well as becoming good salesman. They made it so difficult for any care to drive by, thankfully, most didnt but I really couldn't understand how any could. It was such a joy to watch!

For all of you who visited a stand or supported these kids, we could never thank you enough. It meant so much to so many. In addition, on Friday we received an email from the foundation informing us that Vanderbilt had been awarded a research greant totaling 206,000 for the next two years in honor of our family and the community support of Bowling Green. It was such terrific news.

It's not too late to join in the support. If you know anybody that might still want to help, please pass on the website at www.firstgiving.com/Rileyandfriends. We have another stand next week at the KY Trust Bank on Campbell Lane and will make one more big push this week.

Finding this charity has been so wonderful because I know how important research is. It is vital in finding better treatments and cures. And it's a wonderful thing we can do as a family and with our friends. With all we've been given, it such a wonderful feeling to be able to give back. I wish I had a way to share all the articles in the paper, I'll try to figure that out later. It makes me realize how proud I am to be part of such a wonderful community, and that includes each of you.

As for me, still having difficulty with the swelling and fluid. Trying to get into the doctor before Wed. I will keep you posted.

love, hope and courage
Carol

Thursday, July 6, 2006 10:12 PM CDT

Just a really quick update tonight. I'm desparately searching for my sense of humor and faithful attitude. They see to have gone MIA.

I've had a little bit of a difficult week and I confess that my anxiety level is probably at it's all time high. I find comfort knowing I've got several of you who are so committed to pray for and believe for me.

I've become more 'uncomfortable' each day and felt like something was wrong. I know pregnant woman at the end are uncomfortable but it just seems I've been beyond that.

I went back to my doctor here and it's seems perhaps the amniotic fluid problem has gotten worse. It's not that I'm puffy all over, it's as if it's all in my stomach and there is no more room. I practically have to live on my side to find any relief. It's one of those conditions you should not look up on the internet, and yet I did. Big mistake. Too much fluid is rare. Often times they have no idea what causes it and it goes away. The other percentage of the time it indicated an abnormality with the baby. Now, with as many u/s as I've had, I do feel confident they would have caught something. There is just one thing in the back of my mind that continues tobother me. When it's a problem with the baby, it's usually a swallowing problem with the baby. Of course, I immediately associate Reid's difficulty with eating from day one and start my mind racing that this baby has the same thing. And then I wonder why I'm still having the blood pressure problems.

I will feel better after I go back to Vanderbilt on Wednesday for another u/s and get to talk to them and their thoughts. I know their is nothing I can do but forge ahead and keep the faith. Still trying one day at a time. He does seem to be a big baby, so I'm still rooting for the borderline gestational diabetes theory. Thank you Joan for catching me at Shogun (let's not confuse fat and carbs, I did lay low on the rice) and someone else did catch me at Moes and I didn't lay low on the chips. Surely they were low carb chips.

The big thing is, we've got to get through this weekend. Riley and even Reagan have worked so hard on the Alex's Lemonade Day Saturday. They have walked the neighborhood with flyers until I thought their legs were going to fall off, made posters and phone calls like crazy. Riley has been on the "media circuit." I'm mortified for all of you that might have seen the Midday show on Monday. It was just suppose to be Riley, but they were afraid in case she didn't talk, I needed to be there too. Well, she talked fine, and there was the beach whale next to her... can you imagine if the camera adds 10 pounds what I looked like??? There is a little of my sense of humor coming back. Again, I'm not vain :)! She is talking to the Beaver (Scooter Davis) in the morning and maybe one more interview for the news and paper....and well, I just hope everything goes well and all the kids have fun. They've all worked hard. Don't forget to keep posted of how they are doing and all the plans at www.firstgiving.com/rileyandfriends

Thanks so much to all of you who have been supportive already. If you live in town, please visit a stand. These kids LOVE to have customers. All the lcoations are on the website!!!

I will probably update before my appointment Wednesday with how the fundraiser went. In the meantime, I very much appreciate all you prayers and support and for allowing me to finish this pregnancy in a very whiny and complaining manner. You all are the best.

love, hope and courage
Carol

Thursday, June 29, 2006 6:25 AM CDT

Good morning all. I'm trying to sneak up on the computer this morning before everybody gets up around here.

Of course we've had another busy week. My sister and two of my nieces came and stayed with us this week. We've had a great time. I'm always the one that goes down to Nashville and rarely does anyone come and stay awhile with us. They come visit quite a bit, but never stay very long. So, it was nice to have the company. My girls and her girls love being together so a big time was had by all.
Riley and Caroline my niece went to tennis camp. My niece may be the next Chris Everret so now Riley wants to really get into tennis. Just when I decide she's 100% a soccer girl, she starts getting into something else. I told her that is the joy of being young. Have fun playing different things, and you don't have to be a phenom in them, just have fun. I'm missing tennis so hopefully it will be something we can do together after little man gets here.

Last weekend I just didnt feel right. The whiny woman really came out and I felt the only time I could get comfortable was when I was laying on my side. I got really sick and uncomfortable just sitting in church. Didn't even feel like checking my email lately (you know it's bad)I had my regular appointment on Monday and really felt confident we'd good a perfect report this time since my big contractions had stopped.

Well, everything basically is ok, I just have new little things to worry about. I know as time draws closer, my anxiety is building. I'm at the point where I'm having to make appointments and schedules for August and I have this secret worry in my gut, praying we all 6 are here healthy and I'm not living in Vanderbilt or Philadelphia- but still having a hard time turning my fear and anxiety over to the Lord. Thanks Erika so much for the scripture you shared. It is a true prayer for me.
They hooked me up to the monitors and although my contractions had stopped, he didn't like the movement pattern. They then did a biometric u/s and the baby looked fine on that and moved and practiced breathing all like he was suppose to. However, my doctor then confesses he had concerns about how I looked (translated, how much weight I"m gaining or how big I looked when he walked in the room) and they felt like on the u/s I had too much amniotic fluid. I even measured much bigger in a week's time. I'm not all that puffy but as Dale put it so sweet and nicely this weekend, "Carol, you're getting big as a barn, this baby will be huge") They indeed think he's getting big and my doctor feels like perhaps I do have a touch of gestational diabetes even though I passed the 3 hour test.

There is nothing special they can do for that (they drain it only in extreme cases and I'm not near that bad yet-my doctor even said he's never actually done that, just knws it has been done). They are just watching it and I'm suppose to watch my sugar and carbs. I think that may be some of the reason for my even more "uncomfortableness" than usual. (is that a word)I am taking it easy as much as possible, knowing that everything can get done when I feel better. I just don't want my mother to have any heart problems when she comes up here to visit(if you know what I mean). Just after watching my diet these past 3 days, I think I feel some better already. The nausea has been better too.

My sister got to experience first hand what I have to live with.....I'm talking about Dale. She also tried to help engage in the baby name conversation and his lack of ability to be serious or offer any acceptable choice. I love him, but I may choke him anyday now!!Everytime I think we've got it settled, he declares he never liked that name. So, the countdown continues and I reminded him that I am the one the bring the birth certificate info to...if he doesnt straighten up, it will be all my choice!!

Riley is getting close to the big lemonade day. She is going to be on the WUHU (107.1) today at 12:20 if anyone is driving around. She's really nervous so praying for wisdom and calmness for her. Thanks to all of you who've been so supportive. This is such a big event for her and she has some great friends helping. Please continue to visit firstgiving.com/Rileyandfriends
to see their progress and updates. Thanks so much to Lenora for your help with the PR, I'm starting to live with a little local celebrity right now.

Thanks to all of you for continuing to check on us. I go back to Vanderbilt July 12th, so I think we will know more then. They also want me to visit the NICU that day. I know from thier point of view that seems helpful and informative thing to do, but I'm not sure I'm up for it. Just one day at a time!

Going to take on the day. Appreciating all your friendships,
love, hope and courage
Carol

Thursday, June 22, 2006 6:59 PM CDT

I'm very disappointed not to have any new pictures to share this week. I really need to take some summer photos since it's about half over for us.

I wouldn't know where to describe this week. So, all I can say, in the big picture, we have nothing to complain about. We continue to have so many blessings and joy in all of our lives. The girls are just thriving this summer and becoming even more wonderful little girls.

Having said that, this week has been full of inconvenineces. That is how I describe them and try (very hard) to inject in the girls.

It's just been crazy. It started Sunday on Father's day, having to take Riley to soccer camp at 1:30. Then, she's been gone to camp everyday from 8 am until 10 pm. So, after church, we had no time together and I did not get to see my dad (big frown). Dale felt he got the shaft too. I started having contractions all day Sunday. Nothing regular, but lots of them. Monday, I have to go to the doctor anyway. My blood pressure is a still high (nothing too dangerous yet but had to up the medicine). They also go ahead and hook me up to the monitors. Contractions confimed, but they said they are not suprised with someone who has carried 5 children. So, again nothing dangerous, but will now start going weekly to watch everything. I knew bed rest was going to be impossible so thrilled that has not happened yet. Dale left for San Francisco, so I was left with all the running, Riley to camp at 8 am and up at 10, Reagan to Bible school at 6 and back at 8:30,and with all the heat and me big as a barn...well, big sigh, it was all acomplished. Then Wednesday night I'm picking up Reagan from Bible school, chasing around Reese while it's past her betime, when Riley calls crying from camp. I barely have a signal and all I actually hear is that her tooth has been knocked out. I'm about 20 minutes out, but I get there, Reese in tow, and happily she is ok when I get there. She actually rechipped the tooth that she lost while on the playground four years ago....whild we were separated and I was with Reid. It brought a flood of memories because I remember how I couldn't be there for my then 8 year old and how sad it was. It was a pleasure to be there for her now.

I would like to tell you that they were playing the championship game and she headed in the winning goal while being clobbered by some big girl, and that is how she lost it. Well, truth is, she was just on the sidelines watching when somehow a ball hit her in the head and she somehow bit down on the tooth. But, let's just stick with the first story.

She is very self-conscious about it, especially because she knows that she is singing a little solo in a church program on Sunday and does not want to get up there without a front tooth (even though we do live in Kentucky). This stress added to the already exhaustion of just the last week of camp, well, she was very emotional, but good overall....and it's sore and sensitive.

We made some phone calls this morning. Camp was over this afternoon, and we were able to get it fixed and her self-esteem back in place. Whew,,, just doing all this while carrying an extra 42 pounds (yes, that is right) and keeping a two year old in tow, all the while still dealing with nausea...and whoa... I told Dale I was going to sleep and to wake me up in August when it's time to push!!!

Last night I layed down with Riley and she was still upset about the tooth and I explained to her how this is not a big deal after all we've been through and there are so many who wished they had our problems. And suprisingly, she agreed and said, "mom I guess I should think about Abby who has travel to New York to have surgery for her cancer." Aahhh, I was just about to say the same thing and realized she does get it, but we all need reminders.

Now, yes, I'm still a whiny pregnant woman right now, but I've very aware that this too shall pass. If nothing else it's kept me from worrying about the health of this new life I long to hold and meet. Yes, patience, I'm trying to learn.

With all this, Riley is still planning the Alex Lemonade Days here. The paper ran a great article on Monday and she has had some wonderful resposes, emails and donations from complete strangers and friends who saw the article. Another reminder of the good in people. Thanks to those of you as well for your support. Riley checked the lemonade website at 10:20 last night with her little broken tooth and yelled, "Mom, Jordan's family donated and a bunch of people I don't know" It was such an encouragement to her. She loves to check on all our caring bridge friends with me and would call from camp at times checking on some of them.

So, please check their progress and pray for the success of the labor of these children. Visit the updates at:
firstgiving.com/Rileyandfriends





So, it's back to the zoo here. Both girls are at Bible school tonight, so I should feed Reese some supper before I'm off to get them.

We have really had a great week!! Really! Hope you have to.

until next time
love, hope and courage
Carol

Thursday, June 15, 2006 8:45 AM CDT

A little hardware always makes the trip more worthwhile. Riley’s team made it to the championship and came in second. Riley is second from left on the bottom row.



Of course, Reagan didn’t want to miss out on any of the action!

We had a good little trip. It was amazing that we left 90 degree weather and went up over 200 miles and it was freezing and rainy (high of 59 the first day and did get to 70 on Sunday). Another amazing thing about going north a little, can you believe I could find NO sweet tea in that town. Sweet tea is one of the staples that are so good to me right now. Nowhere!! They would look at me like I was crazy when I'd ask for it. And I'm not convinced that they know how to make tea in general.
But, we had fun. This was a team made up of half Bowling Green/half Owensboro girls that was put together for this tournament. So they were thrilled to do so well only having 2 practices together.

My appointment at Vandy also went well yesterday. He is still very cute and photogenic. He weighs 3.8 pounds and nothing was mentioned about the liver, so I don't think they are worrying about the measurement too much right now. We go back July 12th and we also see a neonatologist who will check the baby out when he is born. We still have to decided for sure if we are going to deliver here or at Vanderbilt. I would love my OB here to deliver, but if anything were to go wrong, I think we would be better served down there. Since school will have started back, it won't be as convenient down there, but we just have to weigh everything and make our decision.

Other than that, everything is just getting crammed in right now. The big girls went camping with their aunt and uncle this week and come back today. Riley has soccer camp next week and Reagan has Bible school. Then hopefully, we will have the Big Alex Lemonade stand day and then things will slow down.

I'm miserable, but trying not to complain (yeah, right) It's really not the heat, but my nausea is still there and I'm not exactly sure how I could get any bigger. I know I will, but Reese pulled up my shirt the other day and said, "you fat mommy. You look like Fat Albert." I keep trying to look forward at the light at the end of the tunnel. Hopefully around 7-9 more weeks before it's over. It should go by fast, just praying I get that burst of energy before it gets here.

We still have so much to be thankful for. Riley is doing her lemonade stand in honor of 10 year old Abby here who has neuroblastoma. Please keep them in your prayers. The newspaper was suppose to come out and get their picture together Friday before she leaves for New York for surgery. However, I'm not sure what happened, but I know they had to take Abby back to Vandy yesterday. As you can imagine, they are going through so much right now. Yet, every time you see Abby she's going strong with that tenacious spirit. Riley still needs more stands around town on July 8th if anyone is still interested. She has an email alexslemonadebg@insightbb.com for this project. And we now have a website to help with donations from those out of town, please check it out! Bowling Green Lemonade

Wishing you all a good week. Happy Fathers Day on Sunday to my dad (owner of the Rolex that will soon belong to my son I see, if we name it just right) and Dale and to all the great dad's out there. Hope everyone has a wonderful time with their families. Riley leaves for camp that day, so trying to figure out how we are going to do it all.

oh, thanks also for the continued name suggestions. We tried to talk about it again last night, but didnt get far!


love, hope and courage to all of you,
Carol and family

Friday, June 9, 2006 6:51 AM CDT

Just a quick update this morning before Riley, Reagan, myself and a friend and her two daughters leave to take Riley and Jamie to their soccer tournament in Indianapolis (4 hours away). Please pray for a safe trip, I always get nervous when we travel and when we are separted.
I know Dale will need your prayers as well. He and Reese will stay here. So to my fellow church members, when you see Reese Sunday and her hair is a mess and she may not match, you'll know her daddy got her ready. I'm trying to lay everything out for him, so hopefully he will just have to worry about the hair. I've assured him he can do this.

Having two pillars of our community killed in a tragic accident on Saturday was yet another reminder of how when we walk out the door every morning, we never know what the day holds or how it could be your last conversation/moment with someone. Very sad and such a loss to the community. I'm trying extra hard to remember to kiss all and tell them I love them before I leave.

Our week has had some excitement, but not too much. No doctor appoinments this week which was nice, but too good to last of course. On Tuesday, the girls and I ran to the mall for a minute and when we got there, I discovered the stroller was in my garage. So, that further insured it would be a quick trip. I'm trying to pay for something and keep Reese out from under the racks. So Riley holds her hand while I try and check out and that stubborn little thing starts jerking away from her and then she jerks so hard and Riley is trying to keep her with her, that she falls. Well, no big deal it seemed and it was about 2 hours past nap time. She's crying that her arm hurts and I still can't get home fast enough to put the little grump to bed. She goes down for a 3 hour nap and when she wakes up, she won't move the arm....at all. She holds it like it's in a sling. We tried suckers, ice cream, nothing..it's obviously hurting. Of course it's after hours at this time and I debate taking her to the ER. I have to admit the little fear inside me after just being there for stitches...I thought they would call social services for sure. I decided to call the doctor on call and describe what all has happened. He says it sounds like "nurse maid elbow" and needs to be popped back in place. He tries to talk me through it on the phone, but I was so scared I was going to really hurt her and she's screaming....so, I don't think I did it right. We decide to give her advil and see how it is in the morning. Well, next am, she still wont move it.....at all, still just holds it by her side like its in a sling and only uses her left hand for everything. We took her in and he popped it back, which is suppose to work instantly....but still wouldn't move it,...at all. We go for some Xrays to make sure..nothing is broken but there is some swelling around the joint. Finally, by last night she was really perking up, playing and laughing again and starting to use it. Hopefully, today will be even better.

That was our excitement this week. I can also handle "nurse maid" elbow (even thouh I never heard of that one). I get nervous of course with any kind of joint pain, but I knew there was an "incident' that I could find a cause for. Riley got upset and cried that is was all her fault. I tried to assure her differently. It was one of those Calgon take me away days. I laughed at some of your book titles from my quote of live your life as if someone were writing a book about you. I just hope that I would avoid the "Mommy Dearest 2" title.

I'm off to get ready for our trip. Reagan tells everyone she is going on vacation, and I realized, she's probably right, this is probably as much as a vacation as we are going to get!!

Many blessings until next week!
love, hope courage
Carol

Hope you all have a wonderful and safe weekend. I go back to Vanderbilt for another ultrasound next Wednesday.

Thursday, June 1, 2006 7:19 AM CDT

Baby Boy Miller 5/26/06
I still cry every time I look at his sweet picture. I pray for his perfect health and wonder how anyone could doubt this is a baby!!!


The girls have been staying with my mom the past few days, so I've been on a mission to see how much I can get done. I haven't made as much progress as I would have liked, but you can now walk through my den and I wont be as mortified if somebody stops by unexpectedly! Summer schedule is here full swing and Dale and I tried to plan a little vacation for all of us and realize there is really not any time!! It seems the big kids have something every week in June between the two of them and I'm afraid in July it will take a bull dozier to get me anywhere!

Last week was a litte frazzled and all the doctor appointments didnt really go as well as I would have liked. We got through the anniversary on Wednesday and the last day of school (yes, I'm still sad about having one going to middle school) On Thursday, I went to my regular delivery doctor here. I failed my glucose screening test and my blood pressure had climbed even higher. I started on some blood pressure med and scheduled the lovely 3 hours glucose test.

Then on Friday, we had our monthy u/s at Vanderbilt. Everything looked pretty good overall. However, now the liver is measuring big (they watch that because Reids got big at 1 week old because it was tring to do the work of the bone marrow). If you remember, the entire time I was pregnant with Reese they also said her's measured big. So I'm trying to take this info lightly but it still weighs heavily on me. I go back on the 14th and they are going to try and look more at the liver volume rather than the actual size.

I have to admit that the closer time gets, the more nervous I become. I'm working extrememly hard on staying busy and taking one day at a time, but there is this constant weight on my shoulders, this constant worry. I continue to fill out my August calender as things come up nad make plans as if things will continue on, but in my heart and mind I fear this possibility that who knows what August could have in store for us. Every expecting mother worries, I think mine is just magnified times 100. As hard as I try, it's there. And they wonder why my blood pressure is so high. Even though my stomach is still not back to normal, I seem to have no problem gaining weight!! I'm not complaining, I'd rather have this problem I think than a baby that is not growing. But momma is definitely growing!! I don't think they make medium materninty clothes as big as they use to!! (ha ha)I'm very close to weighing as much as Dale (I know, that doesnt really take much), so I now just close my eyes when I get on the scale and they are very nice not to voice the weight out loud. To top it off, my high school reunion is coming up in a couple of weeks. I did not fathom I would be 7 months pregnant at this thing!! Trying to decide if it will be worth the trip. Living in Bowling Green for so long and in the same town with most of my dear colleg school friends, I've really lost touch with my high school ones, I have a couple of special ones that I hope to always keep in touch with. So, we will see. Dale was laughing at my invitaion. The location is at a place in Nasvhille called Buffalo Billards. So, Dale says when he's reading it, "Carol, what type of high school has their reunion at a Pool Hall?" We both got a chuckle out of that. Hopefully, it's not really a pool hall, but who knows! I do appreciate Dale's class (Keyna, thank you) for having their reunion in September!!! You know how it is, nobody wants to go to a high school reunion weighing 30 pounds more than normal!! No, I'm not vain I promise.

I only have a few hours of peace before the girls return so I've got to get going. It felt weird to run the vacuum at 6:30 this morning without fearing I would wake some one up. I did pass the 3 hour glucose test yesterday, so no diabetes for me!!

After my appointment last week, I went to visit a couple of friends with children at Vanderbilt. It brought back so many memories. My dad was with me and as we left it hit us how we are going back to our nice comfortable home and our healthy children, only I know what those mothers are going through living in that hospital room with their sick child. Even though I'd been there, it was still easy to jump right back into my comfortable life style. I don't ever want to take it for granted. It broke my heart and was so hard walking back on the pediatric cancer floor. The sights of the bald children smiling, playing and doing their best to make the best of difficult situations. The worry on the mothers faces and the obvious fatigue. Life continues to be sad, there is no dobut about it. I just prayed for God's comfort and for others to reach out to them like we were reached out to.

Thanks once again for all of you prayers and encouraging notes and emails. I'm still having trouble with email, and there is often steam coming out of my ears over my troubles with insight!! I know some of you have experienced the same.

We appreciate the continued prayers for the health of this baby and for comfort and trust in the meantime. On the naming front, I just don't know what to say. I've never known two people like Dale and I that could be more opposite on names this time. I have one that I love but he wont even consider it, yet he offers no alternative. Reese told us she likes "Rap" when shes not still stuck on it's a girl named Reba. She now says baby brother is in mommy's tummy and baby sister is in hers (as she pulls up her shirt to show everybody! I still read all the suggestions. Paula I like Reeve a lot, but think it's too close to Reese. It's always something,huh?

I know this update has rambled on a bit, but thanks so much for listening.
I saw this on a church sign the other day and thought I would share it: Live as if someone were writing a book about your life!"

Have a great week!!
love,hope and courage
Carol

Wednesday, May 24, 2006 11:01 AM CDT

No matter how many times May 24th comes, I always think I'm ready, but it continues to hit me so hard. It's a day I will never forget, a day whose details play over in my head and a day of complete sorrow and utter awareness of the hole left in my heart. It's very agonizing to recall the details of the events that took place that day. I played them over and over in my head last night. At sometime early this morning I think I finally went to sleep. Just in time to hear the alarm going off to get the girls off and ready for school. My eyes still swollen from crying myself to sleep last night, I try to put on the happy face for them. Then it hits me like a ton of bricks, it's one of my other babies last day of elementary school. Oh, how can it be? How can it all be? I thought I was ready for that to, but yet here I am getting her ready for the last day. She tells me how plainly she remembers the first day of school and what she wore and of course, who could forget Reagan getting sick on the bus. How this year has flown, how these past 4 years have flown, yet how time has stood still. How I often feel time is frozen and I'm still in that transplant room in Philadelphia. I watch them get on the bus and I don't think I could put into words the feelings, the heartache, the love.

I decide that the choice is mine on how to spend my thoughts today. I could focus on how he died, or I could remember how he lived. Although I'll never get the details of his final moments, our final moments together,out of my head and memory, I decide to focus on how he lived. He lived innocently. He basically only knew a world of hospitals and of constantly being poked where broviacs and pic lines were "normal." Yet I know he knew his mother. I believe he knew how much I loved him. I know how each morning when I went to scoop him in my arms at the joy of facing another day, his smile is forever imprinted in my heart. He lived a brave life where he really rarelys showed fear. He didnt know any different. He lived an inspiring life where he reminded many to pray daily and often and taught that the simple things in life are the most important.

The song that is playing, Bedtime Prayers, comes from Twila Paris' lullaby album. At three weeks old, when he was in the ICU, it's the music we played to calm him and to mask the horrific sounds of the ventilator. I absolutely love every song on the CD, yet I can barely bring myself to listen to it. It was a simple prayer, but one we prayed daily. God bless him. That was our hope. It's so hard to let go of that hope, let go of part of your future and forever realize you will have a hole in your heart.

I know this is getting a little long, but I have to tell you about my day so far. Afer the girls left and Reese gets up. I'm getting her up and her shoes on and out of the blue she says, "Where's Reid?" I'm blown away. I know she's been totally confused as she often sees pictures of big brother and hears constant talk of baby brother. I tell her Reid is in heaven with Jesus. She says, "I want to go see him." I first think, how sweet, and then I think, no, sweetie not yet, mommy needs you here with her. I say a prayer right then for protection for all of our family and for God's will to be that all my children live long heathy lives.

Reese and I had to go to a meeting and then I decided to run by target to pick up some things. I decide that it might be a good day to honor Reid by getting a little sweet something for this new baby. I won't let myself buy anything, prepare a room or really make any plans for anything beyond his birth. I go look, and I just can't find a thing that I really want to buy him. Just nothing I'm looking for. I don't feel like going anywhere else, just want to get home. So we head home and I get our mail. There in the box I received a perfect and fitting gift from a special friend... it's the sweetest onsie, bib and cloth diaper with one of my favorite verses .. "For I know the plans I have for you.... It was exactly what I was looking for, what I needed at the moment(Susan, thank you so much). Once again, a reminder that when we sometimes wonder where God is, be patient, he will show His love somehow. I'm so fortunate to be able to see God's love through others. It even gets better. I go on in the house and to the front door to let the dog out and there are beautiful planted flowers from 3 dear friends. I don't expect anyone to remember what today is for me, so I'm so touched and blessed when I'm the recepient of so much love. So, thank you my dear friends, that is how I know that there is so much reason to keep looking up, keep giving back, keep living. Life is sad, there is no doubt, but like I've always said, without suffering, we wouldnt know compassion. I've been given so much compassion. I believe that to know compassion is a blessing. I am so thankful I had Reid. He changed me forever. As with my other children, I love him more everyday. I'm so proud of him. It feel so good to say that. I had him, I held him and I was there when he both entered the world and left. It feels good to express how proud of his life I am and how grateful I am for all he did for my life and for that of his dad's and sister's, grandparents, aunts, uncles, cousins and friends. We all still love him and thank God for him. We didn't get the miracle we prayed for but we got the miracle we never expected. He was our miracle.

Thank you for allowing me this space, this time, these ears to try and begin to express my heart today. I'm so grateful to all of you and realize how much I have in my life to be so grateful for.

God bless you all.
continuing on with love, hope and courage
Carol

Thursday, May 18, 2006 12:08 AM CDT

Hello to all!

I'm taking a moment to update while the sun is shining for a second and I have a quick minute or two before I go and pick up Miss Reesie from Mother's Day Out.

Before I forget, I'm having a great deal of difficulty with my email server. As many of you know, insight has been doing all these "upgrades" and sometimes I can't get on my email and now I'm discovering that I may get some but am not getting all of my emails and all of my emails are not getting sent. However, I do not getting anything returned or any type of message. So if you have emailed me and I have not responed, you know that I probably did not get it!

I had a pretty good mother's day. It was the first time ever I think that I did not see my mom. The girls were out of school on Tuesday, my brother in law was having surgery on Monday, so we decided to wait and go down to Nashville on Monday after school rather than make two trips. Although, I very much missed seeing my mom and my sister on her birthday, it was nice to have a simple mother's day here. After church we went to eat and then to visit Reid's and my mother-in-laws graves. I do not do that very often. I know everybody feels differently about it, but it has not been something that has provided much comfort for me, although I do admit it gets easier with time. We did enjoy having that special time together this year.

As the four year anniversary of losing our precious, sweet angel boy approaches, I really have something on my heart that I would appreciate prayers about. I think anytime you lose a loved one, you really want to do something to honor their memory and ensure their deaths were not in vain. I no doubt have wanted to do something, but just had no ideas and there are so many charitable organizations already out there. I'm currently seeking guidance in our next direction. We definitley now have an idea of a charitable organization that we would like to start in Reid's memory. It has been further stimulated by the girl's desires to do this as well. There are so many families in the Bowling Green area that have to travel and recurr a lot of expenses with a child with any type of long term illness. In our situation, I had to quit my job. By God's grace, I was only working part time and quitting did not impact our financial situation that much. Many families are not that fortunate. I remember seeing families who had to leave the children at the hospital to go to work if for the insurance if nothing else. I can not even begin to fathom what that pressure would have been like. I did not like even leaving his side to go get something to eat. We have several ideas but are just searching for where exactly to begin. We are very much ready to do more action now than searching and get it up and running soon, but figuring out where to begin has been a challenge.

Other than that, next Wednesday is the last day of school. I think it always helps when a difficult day such as the 24th has something happy to coincide with it (school getting out). We are looking forward to summer, although it's going to be short this year. The good thing about it going by fast, is that little man R, who is still nameless by the way, should be here by time for school to start back. So, we will see what summer has instore for us.

Wishing all of you a great last few days of school. Thank you for continuing to keep us in your prayers. I will have another u/s at Vanderbilt next Friday. In the meantime we will try to enjoy every blue sky and come up for with a name for this new prince.

love, hope and courage
Carol

Friday, May 12, 2006 1:34 PM CDT

It’s just been sort of a yucky week. In the big picture, it’s really been a great week. We are all healthy, no trips to the ER and nothing really to complain about. The big picture has been hard to keep sight of as I’ve been so bogged down with the little things. I’ve been very busy this week occupying myself with way too trivial of matters. I’ve let certain people consume too much of my thoughts and otherwise good moments. Letting go is not one of my talents. A friend of mine and me were really bothered by the actions of some people this week and we both chuckled that we should have let it go a long time ago as we were both still stewing over it. It’s rained a lot and well, May is just not the merry month for me.

I had several of those driving down the road flashback moments. Of course, the 24th will be Reid’s 4th birthday in heaven. It’s still so sad. Yes, time and life has made it easier to handle but the sadness is the same. One of the flashbacks I had was when we were in Philadelphia and it was late one night and I was asleep by Reid’s side as always. I was awakened by a wailing. A wailing of a mother whose daughter had just died next door to us (it was actually an unexpected turn for this little girl). You don’t forget that wail. I know that along with the heart breaking loss of losing Reid, I’m also flooded as Mother’s Day approaches with all the other mother’s I met who’ve lost children. It hurts so much to go there. Yet, sometimes, it's such a relief to cry and agonize for them. I’m back here in this world of priorities being so out of line, moms who sometimes think their child is the most talented gift on earth (I mean, I know mine are but hey), and bickering and fussing over who ate whose candy!! But I realize it’s so incredibly hard this day and age not to get bogged down by all those things. And why does it seem that when you are having some hard times, even the little things wont give you a break (like a flat tire, huh Shannon?) . As hard as I try, I accept that I’m not always going to be who I want to be and even though I know better, I’m going to still let people get to me with the petty stuff.

Yet, if you look around, there is always a reminder of how far you’ve come and how wonderful people are. I had been running late from a doctors appointment, had to pass the girls off on my dear friends, then go gather them all up and drive like a mad woman to get Riley to soccer practice in the rain. By that time, Reese was a true grump because she had had no nap. Reagan was just in a bad mood because she was so bored in the car waiting for Riley and she and Reese can't agree upon a movie. Then Riley hops back in the van all soaking when it's over and I’ve got to haul all three of them over to get Riley a sports physical. I’m trying to fill out some paper work, keep a hand on wild woman Reese (wild is putting it nicely) who wants to run around like a rat out of a cage, keep Reagan, who only has one volume…loud, quiet and everybody is saying they are starving and just in a mood!!! (And you are thinking about how I’m having another one?)But I ran into someone there. It was someone I knew but didn’t know. I had met her because she taught the OB classes when I was pregnant with Reid and worked there in the OB where he was born. She had followed us through the journey and prayed for our family. She saw I was pregnant again and we talked and she asked how long it had been. She couldn’t believe it had been 4 years. It was a reminder in an otherwise inconvenient moment of how good and faithful people had been to us. I later thought of the song blue skies and how there is so much to see if we keeping looking up.

So, I’ve just been a little worn out this week. Realinzing again all I have to be grateful for, I was really focused on looking for the blue sky moments when I got an email that broke my heart. I won’t go into too much detail, but was shocked to be informed that a certain family and mother that I had spent so much time praying for and emailing and sharing my heart was an absolute phony. Yes, can you imagine someone “faking” a story of losing a child? It was unbelievable to me!!! I’ve vented about it and now I realize, I’m not letting satan take my joy or cause me to be more apprehensive about sharing my heart with others (that was my first thought) but this person was just a joy stealer that I’m just going to let go!! (I can do it)

Happy Mothers Day to every mother out there. I know you will, but see just how many times you can tell your mom you love her, those who are so fortunate to still have your moms. I know how much I love mine (hope you’re reading) And for those of you like Dale and his sister Mindy who had to lose theirs too early I pray for some type of peace and joy to fill your hearts and I pray for someone to be a blessing to you on that day. Happy Birthday to my sister on Sunday!

Thanks for always being a blessing to me.

Love, hope and courage
Carol
Oh, I've got to share my hilarious moment of the week. Lately the big girls have been sleeping in the guest bed (soon to be little r's room) together and Dale often falls asleep lieing down with them at night. Well, one night this week I went to bed about an hour or so after Dale. When I got in the bed he popped up and gave me the sweetest little pat and kiss and said "I love you baby" in the sweetest, kindest voice. I thought to myself it seemed exceptionally sweet of him as usually he's a big grump when I come to bed late. Right as I'm having that thought, he starts to get up. I ask him where he's going and he says "oh, I thought you were Riley and I had fallen asleep in her bed." I knew it was just too sweet to be true!!

Thursday, May 4, 2006 9:15 AM CDT

Sorry I have been so long without an update. Life with a two year old lately has made it more difficult to find a minute that she will allow me to get on the computer. Luckily, for the most part, no news has been good news.

Yesterday we saw the pediatric cardiologist to look at the baby’s heart and then the regular level II u/s at Vanderbilt. As hard as they are looking, they can’t find anything wrong. The cardiologist reported that it was just as “boring” a heart and lungs as she had ever seen- and boring is good!! Again, I don’t really think they expected to find anything and all Reid’s u/s were normal, but they are looking closely at everything possible. Even though they can’t assure us everything is fine, it is comforting to see him thriving so far.

A friend of mine and myself got tickled that one of you suggested Regis for a name, so we’ve been calling him baby Reege. However, after yesterday, I think his new name should be Wee Willie Winkie. They tried forever it seemed to get a picture of his face, but he kept flipping and rolling over and sticking his hind end right at the camera. He would look right at the camera and before she could get the still shot, there his hind end would go again. So, literally, we got several shots of his “winkie.” It was plainly obvious. The doctor and we got so tickled that he just seemed so proud. Is this a typical male??? Or is this just a peak at the personality to come? They finally took a picture of his “winkie” and they put an arrow pointing right at it on the photograph. She thought he would love to have that for his scrapbook someday!

Last week, our excitement was our first experience with stitches. I was out playing bunko with the girls (I do like to get away once a month). Well, Dale and Riley were our in our detached garage where Reese climbed up his weight bench and fell before anybody knew what happened. He thought it was bleeding pretty badly and seemed like a puncture so he took them all to the ER. They tried to call me, but my phone was in my purse and we girls can be fairly loud- I never heard it ring. Back at the ER, do you know how queasy Dale and Riley are at the sight of blood?? It’s really almost comical. Riley went out in the hall, while Dale had to hold Reese down while they put the two little stitches in. Well, just as soon as they finished with her, here came the nurse running with Sprit and Epsom salts as they could see Dale sweating profusely, turning pale and about to pass out. He had quite the adventure. I knew nothing about it until I got home at 10:15 and saw the little “All About X-rays” coloring book with her little hospital bracelet sitting beside it. Stitches I can handle!! Those little inconveniences in life do not scare me at all now. I really thought the good that was to come from this is that Reese might really be more cautious about all the climbing she does. Not a chance!

So, that has been our adventures the past few weeks. School is winding down and activities are winding down and we are just looking forward to summer! Oh, I am feeling better. The headaches are gone and the nausea is much better- I am actually having some moments when I feel like my stomach is almost normal. Thanks so much for all your prayers and support.

We continue to take it all one day at a time. Between visits at Vandy yesterday, we stopped by to visit baby Isaiah in the PICU. It brought back many memories. As I watched Nicki going through so many of the emotions I’ve experienced, I felt so helpless in helping her. It conjured up many emotions. Isaiah looked great by the way and I enjoyed seeing him awake, alert and playing. But, oh, there are just no words to describe life in a pediatric intensive care unit. I can’t believe it’s been four years ago. I saw many familiar faces. The memories are as clear as if it were yesterday. Timmy was commenting about how glad they should be that he’s about to go to a regular room and how lucky they are to still have him, and I remembered when you see all the sights and difficult situations that come in and out of a PICU you truly are grateful for every moment and for all you have-your problems don’t seem so bad even though they are pretty rough compared to most! I continue to believe that the pit of hell could be no worse than having to watch your child fight for their life in an intensive care unit. The emotions and worry of a mother (and a father of course, but I’m a little more in tuned with those of the mother) are just the most gut wrenching, soul breaking feelings you can ever imagine. You know that no one loves them like you do yet you are totally helpless in many ways to put their life literally in the hands of others. Doctors and nurses making so many decisions for you and you pray that ultimately God is in control. I’m glad the memories are still fresh and I hope to never forget and never take one single day for granted! I'm definitely not complaining about stitches!! And I continue to pray that although we don’t deserve it, God’s grace would spare us from that pit again.

Keep praying for the Buchannons. I really think he was doing well- he sure looked it!

Love, hope and courage to all of you.
Carol

Thursday, April 20, 2006 12:03 AM CDT

ok, Easter pictures did not go as hoped for. We were running like crazy to get to church on time, especially after the Easter bunny has come and then who wants to get ready for church? I had a thought that one of the biggest blessings about having a boy this time, is one less head of hair to do on Sunday morning!!! Whew,!!! it always just makes things so pleasant right before we get in the car and put our happy church faces on!!

Then, we left straight from church to Nashville, so I thought I would get some pictures there. Well, then I notice after one shot that my card is full!!! I try to borrow my dad’s or sisters but by the time I’m trying to figure it all out, the girls have already changed clothes and are ready to hunt egss!! So, so much for any great pictures but I’ll share what I did get.

We had some other excitement this week. I received a phone call a few weeks ago from the ALIVE volunteer center here that they wanted to nominate Riley for the first ever Rookie of the Year Volunteer award for all her service, especially with the her work from the Lemonade Stands. Of course we agreed but didn’t really understand exactly what is was for. There was a reception on Tuesday night and it was very nice. There were 16 people nominated for the Rookie of the Year and they read a little about each nominee and their service to the community- very impressive. Riley was the only person under 18 nominated. Well, to our delight and surprise, she won the award. Of course we are gushing with pride, so I do have a picture to share from that event!



The winner of the regular “Volunteer of the Year” was 97 years old!! Yes, 97 and has been volunteering as a foster grandparent every day since she was 74!! So, what is our excuses, huh? Here, I got a picture of the oldest and youngest nominees of the night.



It was such a nice and much needed encouragement in our week. I have still not been feeling very well. On top of the constant nausea which just seems to drive me a little crazy, I”ve been having a lot of headaches. I never get headaches so I’m sure it’s hormonal. I would take anything but nausea right now, but unfortunately I’m having both. I know I seem so whiny but it just seems like the constant not feeling good has taken it’s toll on my patience and kindness. I’m trying so hard to focus on the good that lies ahead and really trying to keep focused on the positive, but I’m not always winning that battle. My plate is full with enough worry right now- or should I say “concern.” I come home from this beautiful reception where you hear about all these people making a difference in our community and then I decided to check my email. What a mistake. Nothing major, just little emails complaining about this and that. Like, needing more commitment at soccer or this activity, etc. I realized we are spending about 4 days a week on the soccer field between the two of them, not to mention every weekend and I feel this little tug inside asking if this is the best use of our time. Soccer and other activities are fun and important, don’t get me wrong, but it easily turns into a mis juggling of priorities and puts us back in the rat race that I so promised myself never to return to. I think just hearing about all these wonderful people making a difference, had me really looking at how we are spending our time and our priorites- you hear about these great people and you can feel like such a loser!! It was a great experience for Riley and she was so encouraged to keep giving back and giving more. The change in the weather has been so welcomed. The girls are having testing this week, so there has been no homework!! It has been wonderful- (take note Kristen and you other teachers, we do love homework free days!!) Last night we actually had time to have a family game of kickball- yes, I was a sight and a easy target!! But for once we had some time to enjoy ourselves as a family and I longed for more nights like that. I think it still has to do from my continuing interest in watching the Waltons every morning at 7!! What a family oriented life style! When I was in the pit of despair living in a pediatric cancer floor separated from most of my family, I realized how unimportant all the running around was and I promised to always remember that, yet, sometimes, I have to take a step back and see how easily life ensnarls you again into the chasing your tail days!

Susan shared a verse on Jordans page that really spoke to me and our situation right now 1 Corth. 2:5 says "My faith does not rest in the wisdom of men but in the power of God." I realize that I need my trust to be in God's power and not the opinion of one genetics doctor! As Reagan so often sings, it's time to call on Jesus!

I ‘m still praying to just to feel better physically which I know will really help with my patience, kindess and overall mental being right now. I do not go back to the doctor until May 3rd. (but thanks anyway Angela for being on top of it). I always appreciate your prayers for us. Thank you for your help, support and encouragement. All of your emails and notes on the guestbook continue to make my days- as well of course as the wonderful name suggestions!! Still reading them all.

Riley is planning on doing the Alex stands again this summer and will be setting up a email for this soon. She is really going to be doing this on her own this year (fat, nauseous mom here will be of very little help to her)with the help of some of her friends. Please let her know if you or your kids, nieces, nephews etc. are interested in joining in the fun! There have been some new diagnosis of pediatric cancer in our community since last year and Riley mentioned really wanting to honor them through this.

Also, please keep Isaiah in your prayers. He had major surgery this week and they’ve been on that lovely post op rollercoaster ride so many of us have experienced! (caringbridge.org/ky/Isaiah)

Always appreciating your friendships!
Love, hope and courage
Carol and family

Thursday, April 13, 2006 1:55 PM CDT

Happy Easter!!

I'm very sad that I don't have any new pictures to share today. However, I can hardly contain my excitement at the possibility of a beautiful Easter Sunday and the hope of getting some pictures of the girls- yes, in their matching outfits. You know I'm a sucker for matching outfits at Easter and this may be my last year. I really can't believer that I found dresses that would be appropriate for both my 12 year old and 2 year old, but I think I actually did it!! Hope you all have a wonderful Good Friday and Easter weekend.

My family in Nashville were all safe from last weeks weather. I have some aunts, uncles, cousins as well who were very lucky. Damage all around them,but they were all spared anythng major. Thanks to everyone who emailed to check on them. Of course, our hearts go out to all those who were not so fortunate and pray for smooth transitions in rebuilding.

Thanks so much as well for all the sweet notes and emails I received. There seems to be so much excitement for this little boy inside me!! It's been a fairly emotional week for me. The possibilty of having a another healthy baby would be a dream come true for me. It's really hard to know how to proceed. No matter what, I've decided to celebrate this new life. I still can not allow myself to buy anything for this baby or even think about doing a baby's room.(even though Reese's room is as pink as it can be with "thank Heaven for little girls" mural as big as you please). I just cant do that. I have decided I am going to buy something at some point - but not exactly sure yet, maybe one sweet little outfit. I have to watch the green eyed monster in me that sees pregnant women so able to buy and plan for a new baby, yet I seem unable to get the 50/50 odds I was given by one out of my head. Sometimes I feel this voice inside me urging me to enjoy, not worry. Then I wonder if that little voice is coming from the Lord or me. One of Reagans favorite songs to sing is "When I call on Jesus"...all things are possible. she was singing it around here just this week and I thought, hey Lord, is that my sign from you that all is going to be fine?? I know that it's true- all things are possible with Him. However, when you've had your baby's life taken from your arms while you pray basically, you know that all things are possible, but doesn't always mean all things are probable. You hear of claiming verses and asking believing- it's just so hard when you've experienced God's answer to prayer that was not your desire, when you've really believed, but the end result was not what you had believed. It's not that I've lost faith, it's that I'm not sure how to proceed with my faith. My faith has to be that God's will is what will prevail and what we must trust to be perfect, no matter how much pain it can cause. I'm not exactly sure what I believe about praying believing- the truth is I dont know. But, everyday I pray for a healthy son to raise and watch to Grow and witness God's grace, mercy and glory through my new son's life. I will continue to pray this and I so appreciate all who pray that for me as welll. In the meantime, it is what it is. I talked to my pediatrician in depth this week, and as she said, we are going to have a plan in case this baby is born with the same, we are going to pray we never have to use it, but we are going to have a plan and the rest is in God's hands. So that is where I stand. I have 3 beautiful, wonderful, sweet girls to keep me plenty busy in these long monts ahead. There is plenty time to worry later!!

We go back to Vanderbilt May 3rd for another u/s as well as an echo cardiogram with the pediatric cardiologist there (since Reid actually died of pulmonary hypertension). I saw my regular doctor today and everything else seems perfect. Yes, even my weight gain is above average. For someone whose been so sick, my body sure doesnt reflect it!! My little bump is no longer little... hey, I'm going to use it's my 5th baby excuse like crazy!!!!!

I love you all so much and appreciate you sharing in this time with us. Your efforts in helping us find a name have been exceptional. Dale Miller is the problem. He will never be serious and keeps just insisting he loves Razor and Raisin! Reese insists that baby brother is in her tummy and his name is Reba!! (And I can't blame my mother for instilling that one in her either). Riley and Reagan have not expressed anything they just love, but do want him to have an R name. Maybe Roscoe P. and Rufus and little Ralphie will grow on me--- you are probably hoping not. I'm reading all the suggestions, writing many of them down, cackling at some. What complicates things more, is like on of my friends on here said, We have a Ry (so there goes Ryland that I like) We have a Rae (so there goes anything with a Ray sound in it) and we have little Ree Ree, Reesie cup, and Reesie pieces as she is known- so there goes the Reeves that I like and anything with a Ree sound.
I know we will figure it out, keep the suggestions coming!

Happy Easter again.
love,hope, courage
Carol and family

Thursday, April 6, 2006 9:30 AM CDT

We are still in Nashville visiting and finally got a chance to get on my parents computer and update quickly.

First of all, thank you so much for all the prayers for us on Tuesday. I do not think things could have gone any better. The doctor that I saw at Vanderbilt with Reese is no longer there (that was really a good thing). We met with the doctor who actually delivered Reese while they were performing the detailed ultrasound. Dr. Bennet was much more positive and compassionate. She did not look at us like we had 2 heads or seem judgemental in the least. Furthermore, she did not pressure nor recommend that we do any riskier procedures such as amnio or cordiocentisis. Everything looked fine on the ultrasound. No evidence of anything obvious with any kind of condition. Of course, there is nothing they can really "look" for on an ultrasound for Reids illness, but at least this time the liver size measured normal (Reese's never did even though it was fine). We left there feeling better than I ever had with any time with Reese before. As a said, the compassion they demonstrated and the time they spent meant so much and made things so much better. I ended up having a great birthday and really appreciate all your thoughts, prayers and well wishes.

Now, as to the sex of this baby. Hmmm.... You know I thrive on keeping you hanging. How else can I assure you'll come back and visit, huh? Dale really didnt want to find out. We do love the excitement at the time of delivery, but in talking with the doctor we thought it might be best to know so that if it were to be a boy we'd be better informed on decisions to make as far as further testing. So, we caved and found out.

Ok, I'm going to tell you. NO, maybe I should wait. I don't know...what do you think??????????? Can you keep a secret?? I'm only going to post it now on the world wide web. There are some people I wanted to tell in person, but being out of town has made it impossible to get in touch with everybody. So, I guess I can tell you here although I would prefer to tell you all in person (those that I get to see). Since that is not possible with my caring bridge friends , here it goes..

oh, i"m having a brain freeze. Ok, Ok,..... was it a girl, was it a boy?? What did they say.... what was it??? oh, I remember... the legs were wide open and there seemed to be nothing there, but they kept looking and then we discovered.....
He's a boy!!

We are excited of course but experiencing many other emotins as well. Concern I guess would be the biggest as I"m trying not to use the word "worry". We still appreciate and need your prayers so much. The next 4 or so months are going to seem like an eternity in some ways and I'm making every effort to turn my fears and concerns to the Lord, and take it all one day at a time.

I will update more later on the specifics of the plan ahead. They had some ideas and we need to sort through everything and make some decisions.

I meed to get back to the fun here. Maybe we are off to Opry Mills for a little shopping therapy with my 3 little shopping helpers!!

love, hope and courage
carol

Wednesday, March 29, 2006 1:43 PM CST

Today I have felt almost, not quite, but almost normal. It has been so long that I honestly forgot what "normal" feels like. The constant nausea has almost taken it's toll, but perhaps the light is coming!!! I've been thanking God and praying all day that it only gets better from here. I'm almost 20 weeks- maybe 20 will be the magic number this time. At first I thought it would be 14, then 16 then 18- now 20!!! Reese and I went to Kindermusik, then some girl shopping then we went to lunch- and I actually enjoyed it!! I feel like someone whose eyes were opened for the first time. Please Lord let it continue!!

Sorry I dont have any new pictures to share. Things have just been busy around here with the usual stuff, but nothing too exciting. The girls get out on Friday for Spring Break. My ultrasound is scheduled for Tuesday at Vanderbilt and I didn't want to put it off one single day. So, we are just going to hang out and go down to Nashville and visit my family some. Just hoping to enjoy the week off.

Now, on to more pressing matters. Do some of you really thing I should name this baby Rufus or Rupunzel???? Those has been suggested several times and I'm not sure, Paula if you all are serious or not....surely not. I don't think they have made the top 10 list for us yet- but hey, crazier things have happened. No one will be obligated to buy the baby's diapers if we choose your name- so you are off the hook. We have a couple of girls names that we both like, but not one single boys name that we have come close to agreeing on. So, it's probably going to be a boy. Who knows. I think that when I say all I want is a healthy baby, I really mean it. I'm so use to sweet girls that one more one not be the least bit disappointing for us. What I dream of most is holding a beautiful healthy baby in our arms. August 15th can not get here soon enough.

I continue to be very scared. I'm trying to turn my fear over to the Lord. I make a special effort every morning to let go of the things I can do nothing about. I'm learning to trust- trust that all is in God's hands and that he has a perfect plan for us. Even more than worrying about the pain it could bring me, I worry more about the pain of my children. I never want them to go through that heartache, disappointment and separation again. Riley had to register for middle school this week....AAArgg!!!!!! I especially think of her. She will just be starting school when, Lord willing, this baby is born. I pray for it to be a joyous, happy time for all of us and that her life will continue on as normal- as normal as life can be for a 7th grader.

Thank you so much for all your encouraging emails and notes this past week. It means so much to know you are praying for us and believing with us. I've been re-reading some Barbara Johnson books which have been so encouraging for me to keep some joy and laughter in my life. She is the one who had one son killed in a car wreck, one killed in war and the other one was gay which inspired her to start the Spatula Ministry. She writes so much about joy, laughter and happiness. One thing that stuck out is that a sure mark of a Christian is not found in their faith or love, but in their joy. People who are truly joyful, even in the darkest times, must have a real love for the Lord and a love for life. Life is wonderful...do your best not to miss it!!

Thank you in advance for keeping us in your prayers next Tues as we go for the u/s. Incidentally, it's also my birthday so now I have to be even older when I go!!!! Again, other than any typical heart, genetic, etc. type of defects, I'm not sure this will reveal anything about Reid's illness and the chances of this baby having it, but praying we can learn something enocouraging. I appreciate you all so much. Maybe I'll talk Dale into wanting to find out the gender. We shall see.

Wishing you all a great week full of joy. It's always springtime in the heart that loves God.

love, hope and courage,
Carol

Monday, March 20, 2006 11:10 AM CST

“Pain is inevitable; misery is optional”

I read this the other day in a devotional I had and it hit me as so true. Pain will come to everybody. Sometimes I think about all the parents and friends I know who’ve lost children and loved ones and wonder how they keep going. I realized this is the answer- misery is optional. Although I think that at many times misery is the easier choice, it’s not the best choice. I have taken comfort in realizing that it’s possible to learn to celebrate life again. Reese taught me that more than anyone. I also believe that keeping Faith during difficult times will help you grieve, eventually heal, and embrace life again.
So, with that said here is where I struggle. Here is where I once again have to find out if I really believe all the things I say I do and if I have the faith I often project that I do.

It seems from the moment I accepted that I indeed was pregnant again; I’m as excited as if this were my first baby. However, there is this huge dark cloud surrounding my joy and excitement. It is still not known exactly what happened with Reid. There really weren’t many speculations other than being told often we had been struck by lightening. In the end, in hindsight, it appeared that Reid had myleofibrosis and the only baby ever born with this condition. This is a pre-leukemic condition in men that usually occurs in their 60s where the bone marrow feels up with scar tissue and therefore the production of platelets, white blood cells and red cells is eventually impossible. So, how was my baby born with this? No one knows, however one doctor speculates that perhaps it’s an x-linked condition and therefore I alone am the carrier of this never seen before condition and so every male born to me has a 50/50 chance of having this condition (again, if his theory is correct). I also think he was encouraged to think this because I had such healthy girls. I want to immediately tell him that’s crazy, how could I be the carrier for something never existed before, but he seems to think that’s not that uncommon or out of the question. To further make things even more difficult, since that don’t know what gene or chromosome is to blame, if any, there is no way to test for it. So I’m left with the challenge of what to do with my faith. Do I have enough faith that if this baby were to be a boy that I believe with God’s blessing that it will be not be born with this condition. I really want to have faith and believe this, but I know the real challenge is that yes, I’m suppose to have faith, but perhaps not that this will be a healthy baby, but that no matter what, we will get through. I can drive myself crazy wondering how I would ever survive something like that again, knowing I brought this child into this world to suffer, facing all the difficult decisions and heart ache again. I pray with all my heart that this indeed in not God’s plan for our lives. So, I share my deepest fears and difficulties with you. The prospect of this new baby’s life has once again put some things in perspective for me. All those things that seemed so important a few months ago, now appear quite trivial. It’s always a good reminder, but a scary time none the less. So, I again ask for your prayers and understanding when I seem so distracted. Some moments I feel great about everything and confident all will be well, other times I’m already trying to make plans and decisions in my head as to what we will do.

We will have an ultrasound at Vanderbilt in two weeks. Other than the usual problems and issues, I’m not sure what information this will reveal. We did have a negative Alpha feta protein test that screens for down’s and neural tube defects which was great news especially with my age. So, for the next four months we will continue to pray and to remember that misery is optional. Please pray for the communication that we will have with those doctors. I know sometimes they come across very harsh and judgmental, and acting like I should be shot for allowing myself to get pregnant again and take the chance. This is the attitude we got from some of them with Reese. My doctor here has been extremely wonderful, positive and encouraging. We have some decisions to make as to what test we are willing to do and where we will deliver, etc., but plenty of time ahead to make those. Thanks for listening to our worries and concerns right now and for your continued friendships and support.

On to lighter news, the baby naming ideas have been most helpful, however, we still aren’t yet close to any agreeing. You all are so funny with some of your suggestions and questions. Perhaps we should make it a contest- not sure what the prize could be- maybe you could buy the baby’s diapers for this first year!! Hahahaha. Not much of a prize huh?? This update has been a bit too long, but I’ll update our status on the naming more next time.

Hope you all have a great week. I’m going to change the song on here again back to Held. A friend of ours from college lost his baby last week from complications of prematurity and I had this song on my mind. Her name was Eden and she lived here for 16 days. Then, my sister sent me a sweet email after hearing this song, so just felt led to share it again. Also, Please continue to keep the Cummings family in your prayers (caringbridge.org/visit/abbycummings).

Love, hope, courage and faith
Carol

Wednesday, March 8, 2006 9:07 AM CST

That was our excitement from last week. Riley and 4 of her friends danced and sang at their school’s talent show. It was 2 and ½ hours long- but what parent could say they didn’t enjoy it! Well, after about an hour, I was hoping for more kids who were going to whistle the Andy Griffith tune- short and sweet. It really was a hoot, but I know some of you have sat through things like that before and you feel my pain. The girls had fun and it’s always a good experience to get up in front of people. There were 44 acts and Riley and them were 41st to go on- thank goodness I got a babysitter for Reese. As you can tell, they got all fixed up- that is not how Riley looks on an everyday basis- don’t worry mom!

It’s been one of those life seems so cruel kind of weeks. Just had so much on my mind lately. My nausea is about the same- still praying everyday I’ll wake up and it will be gone, but the Lord has not seemed ready for that to happen yet. Have I mentioned how much I hate nausea??
I’ve had a lot of sick kids on my mind and then yesterday when I heard the news about Dana Reeves, I really felt like, ok, enough sadness. I just couldn’t get their son of my mind. Fourteen years old and lost his mom, dad and grandmother within a year it seems. Abby Cummings (caringbridge.org/visit/abbbycummings) starts chemo and double bone marrow biopsies this week-it’s going to be a big one for them. Isaiah has been sick and is now well enough for a big surgery tomorrow (caringbridge.org/ky/Isaiah). We have some other friends with a tiny premie down at Vanderbilt and it seems like every week I'm learning of another friend or acquaintance being diagnosed with breast cancer. Please keep these families in your prayers and know it’s difficult days for them.
I have been so self absorbed since I’m constantly not feeling good, and trying to focus on what other’s have facing them. Mine pales in comparison.

Since the sun has been shining lately, I decided to add Reese’s newest “springy” picture rather than snow picture. I have to tell you one funny Reesie story. I thought she was ready to potty train (well, she probably is ready). She’s used it some and talks about it a lot. Well, you know how on pampers there are different characters on the diapers (big bird, elmo, ernie, etc) Each diaper in the pack is different. So, I caught her in the act of about to go poop. I said “ Reese do you need to poop?” and she said “yes” then I said “well, let’s go get on the potty” She then said “No, I’m going to poop on – and then looked down at her diaper to see who was on it-“ I’m going to poop on Big Bird!!” She is crazy. You had to see her expression and how serious she was about it- very funny!!! Needless to say I did not convince her otherwise and poor Big Bird got it bad. Poor me had to clean it- not good for the nausea.

I’m going to try to add a new song. Doesn't it sometimes seem like there is so much bad news everyday. Wondering why I think is universal in all pain and grief. I continue to hunger to see the bigger picture, to see a purpose-not just for my pain but for the pain of so many. I think I’ve accepted that I probably never will see the true picture- because I'm not seeing through His eyes. I’ve seen a lot of bigger picture moments, but still wonder why my way wouldn’t have been better. I continue to believe that without suffering we wouldn’t understand compassion. Compassion is truly a gift.

Wishing you a great week!

Love, hope and courage
Carol and family

oh, thank you for all the R suggestions- I'm reading them all- yes mom, even yours!!!

Thursday, March 2, 2006 1:48 PM CST

I had to add Riley's snow day picture and will add Reesies' next time I guess. It seems a little odd today since we are having 70 degree weather here.

Things are slowly but surely getting somewhat better for me. The constant nausea is still there but a little easier to deal with-not quite so intense, but just enough to drive me crazy. However, I haven't had anymore trips needing IVs or any vomitting in a record of 5 days.
I have tried it all- ginger, phenegran, reglan, steriods, relief bands and even the ever coveted zofran. Many of you have had exeperience with zofran. It worked wonders for Reid's nausea when he had chemo. Well, it must be made from diamonds or 14k gold at least. For a six day supply, after my insurance which is great, it cost me $100.00. Now, if it worked like magic I would take out a loan if I had to! However, I couldn't tell that it helped the nausea all the much although it did help reduce the vomitting. To illustrate what wonderful friends I have who always come through for me- I have to tell you about a package I got in the mail. One of my friends who happens to be a pediatrician lives away from here. She is also pregnant and was very sick like me for the first 3 months. I've talked to her on and off and she knows how sick I've been. Well, the other day I go to my mailbox and there is a package with almost 100 zofran pills- that was like a $1000 gift for me. I've been keeping it in my system and it has taken the edge off. I'm getting out more and able to lie around without being totally miserable.
Truly a God send.

I'm looking forward for this sickness to go away completely and I can feel normal again. The constant yucky feeling has caused me to be somewhat self-absorbed and irriatable lately. I've been a little depressed thinking I'm missing so much and being a terrible mother. My sickness sure hasnt slow Riley and her ever full social life down any. Our house continues to be quite the hang out-so you can imagine the mess I've got facing me when I get in the mood to clean again. I wish someone would invent a self-cleaning house. It's amazing the damage 3 little girls and their friends can do while mom is stuck on the couch!! It's only stuff, right?
I have been able to get out more. I got to enjoy the weekend with my mom and niece for their birthdays (we like to do birthdays in pairs in our family). It is nice that I can now go in a restaurant. There for awhile I didnt even feel like talking. Every week seems to get better and if any of you have any ideas I haven't tried, feel free to share. I'm always looking for that quick fix!!

I really appreciate all of your sweet and encouraging notes on the guestbook and emails. Thank you so much for sharing in our joy. As nervous and worried as I am, this is a joy.
Since I've been sick, I've watched a LOT of TV. I've gotten hooked in the morning to the Walton reruns. Reagan has been home sick with me this week- she has the flu and it hit her hard. She's been watching with me and thought we were going to be like them soon if I didn't quit having babies. She and I really enjoyed it and there sure is something appealing about living that sweet simple life with your family and community. Riley commented that she thought it would be fun to live like that. I know that is how my parents grew up and sometimes I do long for simpler days when you werent consumed with the rat race!!

I also appreciate some of you name suggestions. We havent thought that far much yet, but we did agree that it will probably have to be an R. I'm afraid this child would have a complex if not, there just arent many left out there. I will be eliciting your help in the months to come there I'm sure.

There really isnt too much other excitement to report. Now that I'm getting off the couch more, perhaps things will pick up.

Please continue to keep Abby Cummings in your prayers. Her page is caringbridge.org/visit/abbycummings They are definitley in dark days right now as they found out yesterday she had the wrong diagnosis and in fact has neuroblastoma. To my St. Jude friends, I think they may be heading your way soon, so please check on them.

Appreciating you all and sending love, hope and courage!
Carol

Tuesday, February 21, 2006 2:24 PM CST

I vey much apologize for taking so long to update. Please bear with me while I try and explain.

Word has spread locally, so it's really no secret except to all my out of town caring bridge friends. As some have guessed, I was just minding my own business on Christmas day, enjoying my family and really being CONTENT with all I have- even though someone is always missing, I was really learning contentment. We went to my parents Christmas night and just as we were sitting down to eat, this wave of unbelievalbe nausea came over me. It has been with me ever since. Yes, I knew that nausea and I knew it was not a stomach virus- I just couldn't believe it was happening to me now!!! After all Dale and I had been through in trying to get the last 3 of our children onto this earth- it had happened on it's own- when I least expected it- when I was content with the size of my family for the first time in my life!!

I admit that I'm now thrilled to be expecting another blessing. However, it has not come without its difficulties. I've been nausious and vomitting everyday- 24 hours a day- since Christmas. The last week or two have been better, but the constant unrelenting sickness has almost made me certifiably crazy and mean. Yet, I feel so guilty for being so depressed about it when I know there are so many women who so much want to be in my shoes. I was instantly reminded of the time I went to the doctor when Reid was very sick at Vandy. There was a woman there that I causally knew and she was in the waiting room bawling (not tears of joy)because she had found out she was pregant again. I remember how that hit me as she has no idea what surrounds her as my son was fighting for his life- how could anyone be so upset about expecting a baby. So, with that memory deeply planted in my mind, I became thrilled with my news. Of course, I'm scared out of my witts and very concerned of whats ahead still not knowing for sure if Reid's condition was genetic as one doctor suggested, but once again just have to believe we will get though whatever. I'm not convinced that I beilieve that everything happens for a reason, but I do believe you can use everything that happens for a purpose. When I get through this nasty all day morning sickness, I know I will be in a much better mind frame. I have been too sick to even update. Once again my dear friends have been great and very helpful.

That is all we know for now. I'm due in August (I'm almost 4 months). I go for a Level 3 ultrasound at Vanderbilt in about 5 weeks. We are not finding out the sex of this baby. There just aren't enough good suprises left these days and I think it will be more fun to wait.

Thank you for being so patient with me. I'm sharing some pictures of our recent snow day. I was too sick to get out with them- but they still managed and Dale got some great shots!!

I also would ask that you add 10 year old Abby to your prayers. I've known her mom for a long time and when I get a chance to talk to her and get her permission, I will pass along her caringbridge page. She's been diagnosed with Ewings sarcoma. She also has an older brother and a twin sister- so I know a little of what there going through with the clinic an hour away and all they are facing right now. I'll update when I know more.

Always appreciating your friendships!!
much love
Carol

Monday, February 6, 2006 7:31 AM CST

Ok, Ok - Christmas trees are gone! I've got some really good excuses for where I've been, but that will have to wait until next week- long update coming, but not time for that today!! Trust me, it's a doozy.

Thanks for continuing to check on us. Last week was the 2 year anniversary of Dale's mother, my mother in law, passing away. It's always a difficult time and it's so sad she never got to meet Reese in person and how it all seemed to happen so fast. I think my sister in law Mindy needs the extra prayers. I think we are always too young to lose our mothers and it's especially a difficult time for her.

The girls are doing GREAT. This has really been the best school year I could have asked for. Sixth grade math is well over my head, but other than that, homework has not been too bad. They are both playing basketball right now and that is almost over. Riley's team is great and Reagan's team- it's just pure entertainment to watch!! It' one of the funniest things I've ever seen. Thank goodness at her age, they do not put a scoreboard up!!

Dale recently returned from China again and will hopefully be home for awhile. Other than that, things around here have been interesting, but smooth overall. We could use a few unspoken prayers right now but I think getting through the next few weeks will be key.

I promise to update more details soon, thanks for missing me and reminding me about the Christmas trees. I havent been much of a multi tasker lately!!

love, hope and courage
Carol

Monday, January 23, 2006 10:03 AM CST

WE GOT THROUGH ALL THE BIRTHDAYS!!

As you can tell from the above picture, Reese did not like the candles!!! It was my sister’s birthday on the 15th, Riley the 17th and Reesie the 18th. Riley did not like any of the pictures of herself and requested I not put any of them on here. She thinks she has all editing privaledges but I will try and sneek one on. They had a great time, even if it’s less fun to have so many birthdays after Christmas.

So here is Reese after cake. I think she decided she liked it this birthday thing after all.



I can’t believe she’s two and I certainly can’t believe Riley is 12!! I just feel so blessed to have these great girls, especially on their birthdays. Don’t worry, somehow Reagan squeezed out a few gifts herself on her sister’s birthdays.

Sorry so long for the update. I have not been feeling the best and then our internet
went down. I called our cable company who kept telling me they were having system
trouble. However, all my friends who have the same internet provider had service. I
even checked to make sure I paid my bill!! Not sure what happened, but it’s working
now. Thanks for your patience and for missing me!!

Hope you are all having a great 2006. The first month is almost over. I came across a verse today I wanted to share here. Romans 12:15 When others are happy, be happy with them. If they are sad share their sorrow.
I have been so lucky to have so many to share my sorrows and joys with. Thanks for being one of them. Every birthday is never taken for granted around here!!

Love, hope and courage
Carol

Thursday, January 5, 2006 11:12 AM CST

HAPPY NEW YEAR!!

We haven't disappeared, just havent found the time, or the trail, I should say, to get on the computer. It's taken forever to put up all the wonderful workings of Clark Griswold around here and try to get back on schedule.

We had a great time over Christmas holidays and always sad to see it over. Monday night I could not get the girls asleep or awake the next morning. They are finally starting to get back on schedule a little. Above, Riley is pictured with her new ipod, Reagan with her new Elizabeth doll, and Reese was just glad to be there. Let's just say, she had an Elmo Christmas. Sunday after the girls saw what Santa brought we had to get ready for church in a hurry. There was no nursery, so we thought we would just keep her busy during the service with some of her new stuff. Couldn't find a single thing that didn't make noise!! A special thank you goes out to my mother for getting her the Twist and Shout Elmo! Do you know how that plays over and over it my head daily. Everyone needs one of those!

I hope you all had a wonderful Christmas as well. I don't have a lot to share right now. I absolutely love the poem that Susan, Jordan's mom, put on the guestbook. I'm going to try and add it on the end here for all to see. Thanks for sharing that Susan.

Again, a new year brings on new hope, new plans and new adventures to awake to everyday. Who knows what's in store for all of us this year. I hope it's a year of miracles and blessing for all of us. In the meantime, remember, how you handle what happens to you is more important than what happens to you. I hope we all look for opportunities to make a difference this year.

I hope to update sooner. Oh, I got a new digital camera (I really do love Santa). So, you can imagine once I finish playing with it, I should have lots of new pictures to share. Hope you're not too sick of seeing the Miller girls!

Much more to share next time.

love, hope and courage
Carol

"Please say His name"

Do you really think that I am OK?
Though my son has gone away?
Do you think because I smile
I have forgotten for a while?

I have to tell you that you are wrong.
He is on my mind all day long.
Though I may not let it show.
He's always on mind you know.

Why do you turn when I speak his name?
Do you not know that it causes more pain?
Can you comprehend how I feel?
My son was here....my son was real!

I miss my child, but I must hide.
The terrible pain I feel inside.
The lump in my throat it hurts so bad.
because I cannot cry although I am sad.

I can barely speak his name
For the fear might cause you the pain.
I miss my Reid....I miss him so.
I just thought that you should know.

Even though I laugh and play,
I didn't forget my son today.
Please say his name now and then..
Please say "Reid" again.

Wednesday, December 21, 2005 11:44 AM CST

Wishing everyone a very Merry Christmas. I guess this could serve as our Christmas 2005 letter- but what more could I say that I haven't said this year???

Dale has just reached the 12 year mark at Fruit of the Loom- which is very long for that place. I'm still enjoying being home full time. Riley is in the 6 grade and will be 12 in January, Reagan is in the 2nd grade and is 8 years old and Reese will be 2 in January, even though she's been going through the terrible twos a little early!!! As you know, they are the highlights of our lives and we cherish everyday with them.

Christmas is a time of joy, happiness and celebration. But for many it's difficult when someone you love isnt sharing it with you or sickness and illness is upon you and you wonder if it will be your last Christmas "together."- and all the other difficulties and hardships that can make this an extremely painful, sad time. However, focusing on celebrating the birth of a baby who saved the world helps keep it in perspective. I'm the last person that could preach on remembering the reason for the season. My only hope is that all of you experience love and compassion this year that keeps the spirit of Christmas alive and well. The best therapy for me this Christmas has been taking the girls shopping for others. Everytime I've found myself really down, we've gone and gotten another Christmas angel to pour our hearts into. Your kindness and friendship has given me the true Christmas spirit. Feeling the love and support that surrounds our family is a source of hope and energy that keeps us loking up and looking ahead.

Someone gave me a great idea for Reids' birthday. They suggested we take the money we would have spent on him and find a good cause or person to spend it on. I thought that was a great idea and we plan on implenting it somehow next year.

So, thus ends our big Christmas letter! Thank you all for keeping up with us all year long. My prayer is for all of us to have a Christmas miracle in some way or another!

love, hope, courage
Carol and family

Wednesday, December 14, 2005 7:19 AM CST

Happy Birthday sweet Reid. I love the above picture because I remember so well the moment it was taken. Reid was doing and feeling great. He was following every move his dad made with that camera!!This is no doubt the hardest day of the year for me. I think it conjures up every emotion inside me. From joy as I think back to the night of his birth to anger as I often feel so cheated, to gratitude for all his short life did for me, to complete sadness, as I miss him so terribly much.

This beautiful, sweet 4 year old boy is with me everyday. I think of him constantly, I feel his spirit. Every single day I wrestle with the pain of his death. I realize that the courage I thought I had or was told I had, was more than the courage to face his death, but to face life after his death.

Over time I’ve realized that if your heart is broken and your spirit struggles with grief and sadness, there is no better way to find some comfort than to reach out to someone else in need. Taking your pain and putting it to work is the only thing that reassures you that there is a purpose in everything. I have suffered and learned many lessons from being Reid’s mother. He taught me that every moment is precious, that life is worth celebrating, and what we do with our lives is the only thing that matters. The pain can be crippling. Some days I don’t want to even raise my head off the pillow, but wallering in my sorrows doesn’t really help me. That doesn’t mean I don’t often waller, but when I focus on others, weather it’s simple volunteering or having shopping therapy for our Christmas angels, the comfort and hope given is always returned. There are so many in this world who are hungry and hopeless, and there are many in my own backyard and family that need unconditional love and perhaps just a smile once a day.

Life after burying a child takes courage I didn’t even know I had. I don’t really think I did have it. While my anger and limited line of vision have often made the road more difficult, I know that the unknown courage I have didn’t come from me, but from God trying somehow to work in me.

Somedays I still feel my little four year old is going to come back to me. There he will be, feeling so sorry for how sad I’ve been. There those beautiful green eyes and huge smile will again melt a room. But more than anything, I have to believe that he would want be to continue on in life that’s not full of pain and suffering. Reid would want to help me find my courage.

Keeping his memory alive, doing things to honor him is truly how to stay on the path of healing. I might not ever have any big memorial in his name, but simple gestures and acts that are inspired by him is the only way I can continue to honor his special little life.

Someone recently asked me if I had a lot of support when Reid was ill. It brought back the memories of the flood of love and help we were given by my parents, my siblings, my in-laws, our friends, our church and complete strangers that Reid brought into our lives. For that, I am forever grateful.

I continue to thank and appreciate all of you.
December 14 is also another big day for someone I love. My niece Sloane has her sweet 16 today!! I can’t believe it. If you are driving in Nashville, please be extra careful. I think she gets her license today!!!! Happy Birthday Sloane. Two wonderful grandchildren were born this day.

May you be someone’s Christmas today and everyday!!
Happy Birthday my precious Angel!

Friday, December 2, 2005 8:29 AM CST

Just a happy Friday here. I know if you all are like me, all the sudden you couldn't be busier. Between all the programs at school and church, the Christmas parties, the shopping, the wrapping, that baking, the basketball games thrown in there, the indoor soccer, the art classes, the field trips, wew!! I get worn out just thinking about it. Seems like I can never get prepared for how busy December is. I feel a little more on top of it this year- so I'm trying to stay ahead of the game.

Thanks so much for all your great wishes for our anniversary. You all are too kind. My sister called me and thought it was so disappointing to hear what we did on the big day. We went to Chik-fil-a-...at the mall...with all three kids. My sister couldn't believe that after all that gushing I did about Dale that is all we did. Honestly, we were lucky to get to do that. Riley got the stomach virus the day before, so we were scared to really leave her. Thankfully she was up to eating by then. I was just waiting for the rest of us to get it. Someone is always sick on Thanksgiving it seems.
However, it was still fun and like I always say, maybe next year we can take that trip to Hawaii. (Incidentally, Dale is a little reluctant. Last time we went to Hawaii for our anniversary-10 year- I came back with Reid if you know what I mean).

So, things are really great here. I'm getting myself in the right frame to get through the next few weeks. We've got our angel tree shopping things to do and the great "Christmas Post" at church this weekend. Just one day at a time.

Hope you've had a great week and a great one to come.
Also, thanks to everyone who particpated in the book order. Last time I talked to Sandy, she thought she would be able to get about 17-18 books for CHOP. So I think that is great.

Nothing new here to really report- thats always great.
Just thinking of all of you fondly!

love,hope and courage,
Carol

Wednesday, November 23, 2005 8:35 AM CST

Warning: This update might be a little corny and sappy, so not sure if you’re up for that!!!

As I write this, Dale and I have been married 14 years (Nov. 23, 1991). I think it was the coldest day of the year- but I don’t think we noticed. I talk about my kids so much on here, that I realize Dale often gets the shaft!! It has been an amazing 14 years to say the least. On our wedding day I remember wondering what our life would be like, how many kids we would have and if we would always be happy. Although much more time is ahead of us I hope, many of those questions have been answered. We would have 4 kids and although there would be many times I’ve wanted to literally pinch his head off, we would be happy. I don’t think we had any idea of the hardships we would endure, but I don’t think we ever prepare for something like that.

I chose this song I’m playing for a reason. I’m going to attempt to write about something that I never can talk about. I’m very open about our entire journey with Reid, but the one thing that is too painful to talk about as well as being absolutely indescribable, is those last moments we shared with Reid. But, I should back up and explain the song. When we were in Philadelphia for the bone marrow transplant, Dale stayed in Kentucky to work and the girls were living with my mom and dad in Nashville. Dale came up every weekend (I believe he made it every weekend). It was difficult, to say the least for all of us to be separated, for me to be in a town where I knew no one and had no one close, for me not to tuck my kids in every night and for Dale to also have the pressure of still having to provide financially as well as emotionally for everybody-and the miles that separated all of us.. When Dale did get to come up, it’s hard to describe what those times were like. There we were, in a probably little bigger than 12 x 12 room, with our son. Reid would sleep a lot and those were so of the most memorable times of our marriage. If you can imagine, we really had no major distractions- no house to clean, no errands to run, no projects to work on, no shopping to do, no real TV to watch, no kids to haul anywhere- but rather the three of us just stayed in the room with an occasional break to go eat or get wired up on chocolate covered coffee beans (if any of you remember that story). It is times spent like that, with each other’s undivided attention, that we truly g0t to know each other and increase our love and appreciation for our life. We talked and prayed and talked some more- and prayed together some more.. For lack of anything else to do, we played the Nintendo and listened to a lot of music. My church family kept us stocked in music and we were blessed to have a variety of music to listen to. This Mark Schultz CD was often playing. When Sunday night would come and I would have to walk Dale over to the train station to get to the airport– well I can’t even mention it now without tears just rolling. I was scared to face the next day without him, I missed our home and I missed our life- and I knew how much I would miss him until the next weekend would come- but praying the weekend would come and we would have more wonderful time with our son and time together.

After he left one weekend, he emailed me the most wonderful email (he’s the true writer in the family) and mentioned that he had to go and buy this CD for him to have their and that this song- this song spoke to him and the words fit perfectly with our story- that although we were in the midst of hell on earth, our time together was the time of his life. So, it’s always been very special and I wanted to add it on our anniversary.

The three of us were there to help Reid cross over to heaven. It was horrible and I don’t know how else to describe watching your child take his last breath and after saying your good bys handing him over for somebody to carry off to a morgue. So much pain and a feeling of complete devastation and brokedness. Then, you have to gather your things and get out of there, knowing you’ll never be the same again. The staff, of course, was wonderful We made Reid’s handprints and incorporated some things to make it as good as possible. When we left there, they told us to hang on to each other, 50 percent of couples who lose a child divorce- we were committed to be part of the surviving 50 percent. In addition to our family going through enough loss, I knew this was the person I wanted to spend the rest of my life with.

So, I am very thankful this Thanksgiving. I’m focusing on my blessings while never forgetting the pain. I’m constantly working on having the time of my life- much of it, is up to me and how I respond to all that happens.
I hope you are having the time of your life as well.

Love, hope courage to all of you!
Carol

Friday, November 18, 2005 7:53 AM CST

added note: Caringbridge is wonderful. They just got back to me that the had to archive the entries and they are all restored!! Don't forget Caringbridge in your list of "charities" this year! I'm so releaved!! I had mentioned how sad I was that all the guestbook entries from 5/17/01 right before Reid died) until July of 2005 were gone. I was trying to stay calm and my mom had some printed,but so sad
if they were gone!



Yes, just a little reminder that there are only about 37 shopping days left until Christmas!! I can't believe where this year has gone. Clark Griswold (Dale) is in full swing over here and all our trees (he's doing 6 in our house) and lights should be done by this weekend. It's nothing compared to my neighbors (Janice- when are you all getting started?) but we may have our own little cul-de- sac version of the Holiday light show. Honestly, my neighbors is worth the drive by if you live close.

I'm having to work a little harder that Dale to get into the spirit, but I think I can't feel official until after Thanksgiving. I've worked for weeks now on the girls Christmas picture- I'm talking weeks now, to find ONE 4x6 picture that I like!!! The guy at the place where I get them developed told me I was being too picky. I told him "Look, this is the Miller girls 2006 Christmas picture- there is a lot of pressure here buddy!! The two year old throws the big kink into it. When I finally get her to smile, you can be sure one of the other two have their eyes closed. I get pretty frustrated and then someone or all end up crying and then they have pretty red noses and splotchy eyes for the picture. It's an inherited thing I get from my dad- I think the same thing use to happen when I was growing up and still when we try to get a "family" picture. My dad yells at all the fake smilers (I love you but you know it's true) then they get mad- and well you know the rest. We'd all end up in the worse mood trying to get a "happy" picture. I bet most of you have been there. Luckily, my good friend tells me she has the capability of swapping "heads" on pictures. How ever did we survive without modern technolgy??? So, you know what we will be doing later.

I wish everyone a great Thanksgiving. I know we all have so much to be thankful for. It only takes a few minutes of visiting a few caring bridge pages to realize that.
At the gym where I go- or should I say at the gym where I pay my dues (not that I go)- it seems like, what few times I'm there, that song "Wake me up when September Ends" is always playing. I was on the treadmill wishing for a moment that I could change the words to "Wake me up when December Ends." December is difficult. Reid's birthday of course and then I think I have to work a little harder enjoying Christmas. Not that I'm not completely, whole- heartedly blessed to share Christmas time with my wonderful friends and family, including the greatest three girls, and not that I forget the real meaning of why we celebrate Christmas, but it's so different now. I know I sound like a broken record, but that one Christmas I spent on a pediatric cancer floor has forever changed the way I look at Christmas. Now I remember that Christmas is really about being together and it's so hard to watch many loved ones have so much emphasis on gifts. I know it's easy to fall in the trap, but in 2001 the greatest gift I could have possibly had was all of us at home and healthy- together. Although we didnt get that, we made the best of our situation and Christmas was about true love, reflecting on how blessed we are and celebrating the birth that saved the World. The thoughts of those who'll be spending Christmas like we did in 2001 consumes me. What helps, is that I know there are wonderful people, like you, that help those in need make that time as bearable as possible. I'm amazed at the people who find the details, who remember the children in the hospital and ensure that Santa finds them and their families. It's such a humbling, overwhelming, touching time to be the receipent of that kind of kindness. I continue to pray that God would place on my heart when there is a need I can hep with. I pray that our family will remember to spend less time on the gift searching and all that work involved there and work harder to help those who really have needs. It's too easy to get back in the same trap and I don't think that some of our dear friends and family REALLY understand what I mean when I talk about all the gift buying being too much.

Hope you have a great week and all your trees are done this time next week!!

Thanks so much to all of you who've participated in the online book party. I know there have been several orders, and it will continue until NOv. 28th. If anyone else still thinks that might need some books for some one on your little list you can look at last journal history for details and visit www.ubah.com/HOS49469 I'm excited about the easy opportunity to help the sweet deserving kids at CHOP.

Dale and I are also coming up on 14 years of marriage this week- I'll have to tell you more about that next time.

love,hope and courage
Carol

Friday, November 11, 2005 10:54 PM CST

It's Friday night, we are all home and feeling pretty well. It's so wonderful to have a nice, calm peaceful night at home. Riley and Reagan and a couple of their friends are having Movie night watching "Because of Winn Dixie." I thought Dale had put Reese to bed, he thought I had, so at 11:00 I go up there and she is piled right in the middle of them!! She's obviously feeling better. She stayed in all week and I think getting better everyday. She has been 'pitiful but sweet' to borrow a saying from a sweet friend. Thanks again for all your kind words and encouragement last week.

I will keep this email short but know many of you have several children on your Christmas list and I have a way to help out. I've told you about Sami before ( site is nj/samigray) that we met at CHOP. Sami is a cancer survivor and a great Kindergartener now. Her mom sells Usborne books and donates her profits and free books to the sick children at The Children's Hospital of Philadelphia where Reid, Sami and Alex Scott were all patiendts!! She also gives some of the profits to
Alex lemonade stands. In looking for ways to start giving this season, I've talked with Sandy Gray and I'm hosting an online book party where all the proceeds and free books earned will be donated to the children at CHOP. I was encouraged even more to do this, when I was even more so reminded during our short stay in the hospital last week, how wonderful something like a nice book to read with Reese would have been. I took off so quickly that all I had in my car when I got to the hospital, thankfully, was Elmo. A nice new book would have been great while we were spending time in that tent together.

The books look really neat (for ALL ages)and if you think you might want to order and help out in this project, please go shopping at
www.ubah.com/HOS49469 Just use this link and shop from there and the credit automatically goes to this party and the books come to you. The party will be over 11/28!!

You can also do a donation only order, just let me know and I'll get the word to Sandy and she'll let us know how to do that.
I would have a great feeling knowing I helped bring some neat books to these kids and I hope some of you might want to do the same. I don't usually like to use this site as any type of 'soliciation' but wanted to share this opportunity in case any are interested.

Hope you are all having a great week. I've caught up from all the craziness of last week. It's hard to believe the holidays are so close. It brings so many mixed emotions as I think about so many families struggling through with someone missing. I hope to stay busy finding ways to put the focus on helping others as much as possible.

It's very late, so I'll have more to share soon!!

love,hope and courage
Carol

Saturday, November 5, 2005 5:14 PM CST

Well good news/bad news. Bad news first I guess, we didnt stay out of the hospital. She gave us a huge scare yesterday morning as she went into respitory distress. As things go for me, Dale was in Canada. My mom who is just an hour away got here quickly to help with the big girls and my sister in law also helped. It seems she didn't have pneumonia- but not sure- and all those breathing treatments she was on was only making things worse.

The good news, we are home and she's much better. She had some different treatments in the hospital and by late last night starting turning her breathing around. I did fine with it all, my only fear was that she would have to go on the ventilator. If I could avoid that, I knew I could handle it!! That did not happen!! Yeah.

She is on steroids. Can you imagine how much fun it was to keep an almost 2 year old wired on steriods in an Oxygen tent????It was an adventure but she did great and is just the sweetest little thing. By the end, she had the routine down and would hold out her bracelet as soon as the nurse walked in and open her mouth for the breathing treatment and then climb back in the tent!! Little trooper. I took her picture in the tent and will share it soon.

I feel better about everything and confident she's going to be ok. I get a little nervous when I hear doctors say they don't know, but they really think it was croup instead on pneumonia. upper respitory problem virsus the lungs.

Thanks for all the prayers and your sweet notes on the guestbook and emails. They are so appreciated. I need to get back to the wild woman-
love,
carol

Thursday, November 3, 2005 7:09 PM CST

Just a very quick update from a mom whose got litte reserve left right now. Reese has pneumonia.
We are treating at home with nebulizer, steroids and antibiotics but if her weezing does not improve by tommorrow she will be in the hospital. Hoping she turns the corner with all the meds in her.

It's been a week. I'll write more later when I can think straight and have had some sleep.

much love,
Carol

Thursday, October 27, 2005 3:06 PM CDT

Reagan had a great birthday. It was like a mini Christmas for her. All my family and all Dale's family got together and the big thing she wanted as noted above was a guitar. Not sure what she will do with it but that is all she asked for. We will see what she does with it.

We've just had a busy little week runnig around doing the birthday thing. Everyone is pretty excited about Halloween. I think we will have a southern belle, a Belle from Beauty and the Beast and either a little butterfly or an Elmo. Reese is absolutely obsessed with Elmo. It is comical. I wanted her to be a butterfly but then we saw this Elmo outfit and she about had a meltdown. They had a little costume parade today at her mother's day out and she would NOT take it off!! She loves him!! It's been awhile since I've been around Elmo and I didnt realize that he is everywhere. I can't take her anywhere with out seeing an Elmo something and then she thinks she just has to have it. She will walk around the house holding an Elmo diaper!! Crazy girl.

So, that is our excitement. I've had a lot of things on my mind lately and seems I've been a little busier with just petty stuff. Even after 3 years I still find I'm often in the "reentry" stage that brings on difficulties. I still find it hard when people I come in contact with ask me how many children I have. It's just a question that never gets easier. There is the guilt and sadness if I don't mention him but the akwardness if I do. I still have close friends who are afraid to mention his name. I understand that more now but I still cope with the loss on a daily -if not hourly basis-. I didn't author the following but I've read it several places and I know there are lots of people who come to Reid's site who've also expeirenced loss. So, I wanted to share some of the wishes of a grieving parent. I think the author is unknown, but I've plugged Reid's name in and I know many feel these are so true:
We wish you would not be afraid to speak our child’s name. Our Reid lived and was very important and we need to hear his name.

We wish you wouldn’t feel awkward if I mention Reid’s name. If I cry or get emotional when I talk about Reid, I wish you knew that it isn’t because you hurt us: the fact that Reid died has caused my tears. You have allowed me to cry and I thank you. Crying and emotional outbursts are healing. I will have emotional highs and lows, ups and downs.

I wish you wouldn’t think that if I have a good day my grief is all over, or if I have a bad day I need psychiatric counseling.

Being a bereaved parent is not contagious, so I wish you wouldn’t shy away from us.

I wish you knew that all the “crazy” grief reactions that I am having are in fact very normal. Depression, anger, frustration, hopelessness, the questioning of values and beliefs are to be expected following the death of a child.

We will never be “cured” or “former bereaved parents,” but will forever be “recovering bereaved parents.”

Reid's birthday, the anniversary of his death, and the holidays are terrible times for me. I wish you would tell me that you are thinking about Reid on those days and if I get quiet and withdrawn, just know that I'm thinking about Reid and missing him terribly.

I know that most of you know these and are so incredibly sensitive and friends who have stuck by me when it's not been easy. Please know how much I appreciate you. I just felt like sharing this partial list of wishes today.

Wishing you a safe and fun Oct. 31!!!!

love,hope courage to all
Carol

Thursday, October 20, 2005 1:37 PM CDT

Well, Riley returned safely and for the moment all are well and back in school (small sigh). We had several little bugs going around here and I think I caught all of them. My immune system seems to be really down this year- I hope we are just getting it over with early.

There is really not much to report these last few weeks. Riley had a great time. We were all a little jealous that she went to Disney, Sea-World and Universal. Reagan and Reese seemed fairly content with their new build-a-bears they got during fall break. That was about the high-light for them. We spent the weekend in Nashville. Let's just say Reese's first hotel experience was not the smoothest. She decide to become wide awake at 4:00 am and have conversations and sing with everybody. It was interesting but fun to just get away a little. I like fall break and I think it's a great time to take a family vacation, we just couldn't get it together this year and had too many other expenses going on.

So, all is well. Riley has commented that now that all the excitement from the Alex lemonade stands have calmed down she would like to think of some project to do for Christmas, which we all know will be here too soon. The girls can remember a lot about CHOP- especially the play room there and some of the kids they met. I have to confess that Reagan was hoping a little that Reese would have to go to CHOP so she could go back to that play room. She would make these comments back when I was pregnant and I just had to learn to laugh it off realizing she had no idea what she was saying- but it was a really nice play room.
Anyway, having spent Christmas in a hospital, I'm hoping we can use that experience to think of something to do this year to help those thay may find themselves there. I remember being amazed at how much was done for us and the generosity of others to think about everybody.

Two more weeks of soccer for Riiley and I'm always hopeful things will slow down but realizing they never really do unless you make the effort to make them slow down. Reagan will turn 8 next week. I can't believe it. The other day I was thinking about how she is the age Riley was when Reid was born. Gosh, I guess because maybe Riley is my first, but Riley seemed so old then and Reagan still seems like a baby- does that make sense. Those two personalities are so different I'm often astonished that they could come from the same gene pool. You just never know what is going to come out of Reagan's mouth. I'm still undecided as to who Reese is going to be like. Perhaps, she will have her own unique personality as I'm sure she will. She is starting to put words to gether now and it's just so funny how they pick up on things. This week, I had a suitcase sitting out and she ran up to it and said "Daddy!!" I realized how aware she is that he travels a lot. Her favorite phrase of the week is "Go away!" In astonishment I just want to know where ever did she learn that- then I found myself saying it to the dog about 10 times a day.
Hope everyone is staying well at your house. I'm not looking forward to the darkness coming earlier so I'm stocking up on sunshine now. Hope you can do the same.
love, hope courage,
Carol

Wednesday, October 5, 2005 7:00 AM CDT

Well, it's a little earlier than usual, but the sickness season has started around here already. Only this time, I got the brunt of it. I'm rarely in the bed sick- but whatever I've had really got me. Of course, Dale has been out of town so it's always fun to try and get the girls dressed, fed, hair done and on a bus by 6:45 when you feel like your head is going to explode. Reese started it with a mild case and then Riley was very sick last week and now me. Waiting on Reagan and Dale. You know I'm sick when I haven't checked my email in 3 days!

Anyway, I think I may be turning the corner but hope this is no indication of how the rest of fall and winter are going to go. I plan on purchasing some lysol today and having a major spray down in the house!!

I hope that most of you are able to hear the music that I add. I'm not very good with things like that, so I'm not sure why some can hear it and others can't. I'm sure the explanation would be over my head but I will keep trying to figure it out.

This new song I had heard years ago but I don't think I had ever really listened to the words. Then I heard in on another website (angel Riley Millers) and thought how fitting it is. One day a few weeks ago, I had been reading at Barnes and Noble- yes, I had a few moments all to myself a very few moments because right when I sat down to read, I got the call that Riley was sick at school- and when I got in my car to leave this song was playing as soon as I started the car. It was right at the "last hearbeat" part. So, it was one of those crying at stoplight moments. If you've ever experienced someones last breaths- I know you'll agree that it's just an experience you can't describe. And for me, it's an experience I can't get over. I wish I could say it was a peaceful moment when my precious baby flew into the arms of Jesus but it was heartwrenching, agonizing, complete heart-breaking moment that I could never forget. But I like this song and I know that he did fly to Jesus. The pain free wonderful time for him was the worse moment of my life. I'm human, I'm selfish- like Sally Fields says in Steel Magnolias I know hes with the angels, but I'd rather have him here with me!" I can hardly watch that scene as I think she portrayed the pure agony of a mother losing a child.
I didn't meant to get into all of that, just wanted to share some background to this song and how it is a gentle reminder that my baby is safe in the arms of Jesus.

Other than the sickness, we've had good days around here. Soccer season will be winding down soon. We are still running around like crazy but always enjoying it. Reese is such a good rider- I'm starting to realize all she absorbs from that back seat. Now, if we pass a McDonalds she yells "Fries!" when we pull into her mother's day out parking lot, she yells "Caroline" (her frineds name) and when we pull in Wal-Mart, well she starts crying (I know how she feels!). The big girls are always fighting over who gets to sit in the middle row captains chair next to Reese. Who ever "calls" it first by yelling "captain" gets the seat (that is how they do it).So now, almost everytime I'm putting Reese in her seat she starts yelling "captain!" It's just so fun to watch how much she picks up from those two- scary, but fun.

Hope you are all having a good week. Dale should return from Canada tonight and we will be off for Fall break next week! Yeah. Please pray for Riley, she will be going to Florida with a friend. I've never done this before, so I'm a little anxious. Pleae pray for her safety and my calmness.

love,hope, courage
Carol

Thursday, September 22, 2005 1:24 PM CDT

We've had a fairly uneventful week which is what I'm always hoping for. Enjoying the first day of fall in the 90 degree weather!! I'm way behind on new pictures, so hope to get some updated soon. Poor Reese has never had hers made by a professional photographer. Hopefully, I will get her 2 year pictures done this year. That is my goal for now. Reagan informed me this morning that it is only a month away until her birthday so I better get to planning her party. She told someone recently that she was going to have a party last year but her mom never got around to it. Sadly, that probably is more true than not. I have promised her some type of party this year, so we will see.

It's hard to believe that I'm at a loss for words today. I'm thankful for a good week. The only excitement we've had was trading in our van. I had no idea it was going to be so traumatic for Reagan. I knew Dale was sentimental, but Reagan has taken it to a new level. Our van was fine, but getting close to 100,000 miles and we had an opportunity to get a good deal on a newer one. You would think she would be thrilled- it's nicer, more room, etc. Well, my parents came and got it to take it back to Kingsport to trade and she cried for an hour after it drove off. Then she tells me I only wanted this new one because it was clean!! (ok, we are hoping the clean thing lasts- you know how that goes) She just boo-hooed and then prayed for someone we know to buy it so she could go and visit. This kid does not like change. As she told one of my friends, she is "a Reagan original!" After all that, she got me a little sad. It is the van that I brought both Reid and Reese home from the hospital in. I mean there a lots of good memories there- but like I told her- just look at it as an opportunity to make more memories!! I could cry now if I dwelled on it too long!!

I found something writtne by an Alice Weisler who writes a column on grief. I found it so true and thought I would share it this week:

-Grief is laughing with your children and wishing for the absent one to make the circle complete.
-Grief is crying in your car at stoplights.
-Some days grief makes you brutally honest; other days,grief muzzles you.
-Grief reconstructs your heart.
-Grief is sadness, hope, smiles and tears - rolled tightly like a snowball.
-Grief makes you search past the stars and the moon for Heaven.
-Grief strips you of everything you were pretending to be.
-Grief gives you new priorities.
-Grief opens hidden treasures from deep within your soul.
-Grief allows you to empathize more deeply with others who ache.
-Grief makes you unapologetically bold.
-Grief is a daily companion, best dealt with by admitting you do walk with it, even after all these years.
-Grief is the price of love; grief is a gift."
~reprinted from "How to Make A Family" The Expanded Sky

I couldn't put grief into words any better. That crying at stoplights- done that many times!!!

Wishing you all a good week. With the worries of Rita headed, I thought I would leave the song this week and praying again for the calm!!

love, hope, courage,
Carol