History

Wednesday, May 5, 2010 11:17 AM CDT

I’ve had a bad week this week. I’m feeling kind of wrecked.

I think that “Shania Twain week on American Idol” put me over the edge. Those of you who knew Haley, or even knew a lot OF her will understand why. So, I don’t think I’ll even talk about it right now.

Instead I’ll ponder a few questions in life with vastly less importance. Such as…

Why do I cough every time I drink a milkshake?

How do those silly Face book games get SO addictive?

Why do my teenage boys like to physically hurt each other, but are great friends?

What is the difference between blue ray and High def?

Why can’t I work the calendar on my cell phone?

How can men watch the exact same sports centers over and over? Did you know Sports center comes on 50 times a day?

Okay…enough of that, I could really get carried away with the stuff I ponder….

Let’s talk about the foundation!! We have two new children featured for May!
Two sweet girls.

May 2010

Addison

Addison is a brave little fighter! Born with Biliary Atresia, Addi received a liver transplant. She has had some complications including a virus called EBV and is under going treatment and a bone marrow biopsy to help the doctors better understand her symptoms.

Hunter:

Hunter is a spunky little girl who has beaten back Acute Lymphoblastic Leukemia twice! First when she was diagnosed at just 18 months old, and again when she relapsed in 2006. She has been off treatment and cancer free since June 24, 2008. Hunter was always a favorite of Haley’s, and she holds a special place in all of our hearts.

You can see pictures of the girls on our Haley Vincent foundation Face book page. All are invited to join.

In other HVF news, our yard sale fundraiser is set for May14/15 (Fri and Sat). That is really soon! Please try and come out to support us. We have TONS of good stuff. We received great donations this year. Even if you aren’t a yard saler, just stop by and say hello, pick up a brochure, and see the sweet magic of helping children and families. We will also have tables with new items….such as Première jewelry, Tupperware, candles, etc.

Also for the month of May, “We Are one jewelry designs” will be donating 50f all purchases to HVF. You have to choose HVF as the charity you wish to support at the time of ordering. Happy Shopping!

In June, we will be having our annual Pancake Breakfast at Applebee’s. You can get tickets at the yard sale.

Love you all,
Cheryl

Wednesday, April 7, 2010 12:12 AM CDT
Letter to the editor 4/14/10
April is National Organ Donation Awareness month.
My life was changed forever by organ donation. Or more accurately, by the lack of organ donors.

To me, organ donation awareness month means we have to try harder, because despite everything, no organ was available for a beautiful, talented, kind little girl, who should have had many years. Our baby girl. Our lives have been devastated, in a very real way by the lack of donors.

The technology exists; the surgeons are ready and waiting. The survival rates of post transplant patients improve every year. So, why are 106,800 people, many of them children, still on the waiting list? The answer is simple. Because there are not enough organs to go around.

If everyone could spend one day in my shoes, I believe we would have many more organ donors. Maybe even 106, 800 more.

Checking the box on the back of your license is a great first step. But, don’t forget your family has the final say. Make sure they know your wishes. Be very, very clear. It won’t just be one life or lives you will be saving. You’ll be saving whole families.

Cheryl Vincent
Blountville, TN

From my Face book status:

“Organ Donation Awareness Month. What it means to me. We have to try harder, because despite everything, no organ was available for a beautiful, talented, kind little girl, who should have had many years. Our baby girl. Our lives have been devastated, in a very real way by the lack of donors. PLEASE be a donor.”

I know so very many children who have recieved life saving transplants, And I celebrate with them. I am thrilled when they get their “calls”. I am in awe when they approach, and pass another “transplant anniversary. But, not without a twinge.

A twinge of jealousy. The little tiny voice that says, “but, what about us?”

Why couldn’t we have gotten just one more second chance?

The logical answer is simple. Because there are not enough organs to go around.
And, of course, the distribution system is inherently flawed. The scoring system that is used consistently placed my very ill daughter, near the bottom of the list.
Clearly, since she died, she needed that organ as much as anyone else on that list. Funny, how something so impersonal as a list can decide who lives and who dies.

I don’t know why we couldn’t do Living Related donation with Haley either. I just know we asked many, many times. The doctors thought it wasn’t the right way to go, and we trusted them. We still do trust them. But, not without a twinge.

A twinge of “Did you underestimate our daughter? Did you make the right decisions for us?”

The logical answer is simple. They did the best they could. As Dr Romero once said, “We want to add days to her life, not subtract them.”

Good thing I don’t live in the logical world. That would make me crazy. Maybe even bitter and angry. I am so glad I don’t live in that world.

I am so glad I live in God’s world. A world where He is in control, and our ways are not His ways. We don’t have to figure it out. We don’t have to blame. We just have to accept and trust. And wait.

Have you ever heard that song from the movie Fireproof, called “While I’m waiting.”?
If not, you should download it today. It is by John Waller, and it speaks to each of us who are waiting on the Lord to finish whatever it is in our lives, that He has started.

“♫ While I’m waiting..I will serve you while I’m waiting…I will worship, while I’m waiting…♫”

And boy, have I waited! I waited two years for that beeper to go off. I am still waiting for the healing to come. But, I am serving and worshiping while I wait.

I, like so many others, am doing the best I can.

Jeremiah 29:11 says, “For I know the plans I have for you, declares the Lord, Plans to prosper you and not to harm you, plans to give you hope and a future.”

Does that seem like it contradicts what we experienced? Well, yes.
From the world’s point of view, what greater “harm” is there that dying? Where is the hope and future?

Could it be, that like the story in the Bible, Haley was plucked out of her suffering, and chosen to walk the world of eternal life for her own good and benefit?
Could the “harming” have actually been “rescuing”?
Could her “hope and future” been with God, and not her Earthly home.
Could she have fulfilled her purpose here in just 11 years and 11 months?

If you are wondering, my answer to all of those is “yes”.

Do I like God’s plan? “NO”

Do I understand it? “As much as a human can.”

Does this make me miss her less? “NO”

Does this get you off the hook to be an organ donor? “NO!!

That may very well be YOUR purpose in life.!”

Two great men (maybe more), were transported to Heaven to avoid the suffering of this world and death…..

“(Elijah) went up to Heaven in a whirlwind…” 2 Kings 2:11

“By faith, Enoch was taken from this this life, so that he did not experience death; he could not be found because God took him away.” Hebrews 11:5

I know Haley flew to Heaven. I watched her fly.

I miss her.

No parent has ever been prouder of a life lived to the fullest, of a purpose fulfilled.

Waiting,
Cheryl

Thursday, April 1, 2010 9:08 AM CDT
As promised, our April featured children for the Haley Vincent Foundation will be at the end of this update. If I am boring you, scroll
down for their stories!

Food city story….

First a disclaimer….or two….. I always walk into that store unprepared for what awaits me. I ALWAYS think THIS is the trip that will be uneventful. It doesn’t matter how many times weird things happen, I am always caught by surprise.

Sooooo….today, while I was shopping….well, let’s just say nature called. Too much diet coke. So, I go the bathroom, and there is only one stall, I look under for feet….see none…and barge through the door…..only to come face to ….er… not face…umm .well, the image is seared into my head.
I flee the bathroom, having miraculously lost the urge to “go”, and try to shop like normal. I try to pretend my eyes are not bleeding from the image I just left behind.

I get through shopping, completely flustered, forgetting half of what I need, but placing three chocolate bunnies in my cart for the kids.
After I am checked out , waiting to pay, the cashier says, with more than a little contempt in her voice, “Why you gonna spend 3 dollars on a chocolate bunny?”
Hmmm….How does one answer that question?

“Because I’m an idiot.” Or “Because I am independently wealthy and can afford 9 dollars in chocolate for Easter” Or “Doesn’t Jesus’ resurrection make YOU crave chocolate bunnies” Or, simply “It’s none of your business”

I said none of those. I just stared at her. I was drained.

Grocery shopping is exhausting in my world.

I just have a few random thoughts this time….

1. Birthdays
How many birthdays did I spend in the hospital during the years she was sick. Four out of Five. Two in PICU. No wonder I don’t celebrate my birthday.

And yet, I keep getting older. ☺

2. Back to work?
I finally finished the paperwork to re activate my nursing license. And, I have an appt tomorrow with an advisor from ETSU.
Hopefully, I can do a refresher course, and then find some part time work. Between my family and the Foundation, I feel like I work full time already….BUT, I think it would be good for me to get out of the house a little.
I would love to do Parish Nursing again, but we’ll see.

3. CB Book
Apparently Caring Bridge, along with Shared Book, will bind and print out our CB journals. I am going to have mine done. It isn’t cheap, costing a few hundred dollars, but what an amazing keepsake, documenting such a journey.

4. Team Edward or Team Jacob? It’s tearing me up.

5. They just find me.

Whether it is at Food City or my own doorstep, they find me.. My most recent “find”….while delivering our pizza; the delivery boy dropped a bag of weed from his pocket. We both looked at it, and he then covered it with his foot. I pretended not to see, but I am sure he was nervous I was going to report him .
One of these days, I am going to compile all these strange encounters I have with people.

6. Choices

People love to tell me that I have a “choice” in how I feel. “Choose to be happy.” “Choose to move past this.”, they say. Well, I read something another grieving mother wrote on this topic, and a light bulb went off in my head. I HAVE chosen, now everybody else needs to live with it.
These are my choices.

I choose to remember my daughter every minute of every day.

I choose to feel the pain of losing her.

I choose laughter and tears, both.

I choose to be damaged goods. I choose to have my very being altered for having loved and lost Haley.

I choose to be a different person than I was before she died.

I choose to make the best life I can for my three surviving children.

I choose to do the best I can for my husband.

I choose to be sad sometimes.

I choose to be happy sometimes.

Sometimes, I choose to stay in bed and just…be still.

I choose to keep her in my heart, to never let her leave me.

I choose to be the best I can be, while knowing that my best includes a grieving mom’s heart. I am not giving away my grieving heart.

I choose to talk about her, to hang her pictures on my walls.

I choose to journal, throw celebrations, write books, give talks, and dig deep, always talking about her to old friends, and introducing her to new friends.

I choose to NOT let you off the hook. You don’t get to forget about her, if you want to be a part of my life.

This is how I choose to handle my grief.

Foundation News!!

The following are our “featured children” for April. We send out our miracle mailboxes to these children, and any others who need us. It has been our privilege to get to know Lily, Sawyer, Olivia, and Sarah a little better this month. Our prayers are with all these precious children.

Lily (14) was born with a very rare disease called Neonatal Hemochromatosis, she needed a liver transplant to survive. When she was 54 days old she received her gift of life. For many years after Lily's transplant, she struggled with chronic rejection, thankfully today Lily's liver is very happy and she is doing extremely well. She still struggles with food allergies and has to be very careful. Lily also has a growth hormone deficiency and she stopped growing. Thanks to growth hormone therapy, Lily has grown over 7 inches in a year and a half.

LILY and SAWYER with their mom and dad. Brave siblings!

Sawyer (9) was also born with Neonatal Hemochromatosis and received a liver transplant when he was just ten days old. Every day Sawyer faces challenges; he has life-threatening food allergies that severely limit what he can eat. He also has a narrowed portal vein; this has become a very dangerous situation for Sawyer. Because of this, he has portal hypertension, which has led to varices. These varices can rupture at any time, causing a major GI bleed. Sawyer's spleen is also enlarged from this, not allowing him to participate in typical nine-year old boy activities

Olivia-

OLIVIA: Has been dealing with Cystic Fybrosis since she was a baby, and had a liver transplant at age 3. She is struggling with some lung issues at present, and is also being considered for a 2nd liver transplant. Olivia is brave, beautiful and sassy.

Sarah –

SARAH: 14 years old, has been fighting Neuroblastoma since age 7. Currently in remission, Sarah is a shining example of our miracle mail kids. She lives all her days with playfulness, joy, and a quiet wisdom that we ALL should possess.

PLEASE MARK YOUR CALENDARS!!!
MAY 15th YARD SALE
304 CAIN DRIVE

This is an important fundraiser for us, we REALLY need it to be a
success!!

“Grace was given to us in Christ Jesus before the beginning of time.” 2 Timothy1:9

Until next time, my friends,
Cheryl

Sunday, March 21, 2010 1:50 PM CDT

As promised on Facebook, my latest Food City saga…..

I went to my doctor, picked up my prescriptions, and took them to the Food City Pharmacy to be filled, like thousands of other people every day. I get them filled there for convenience; I can shop while they are being filled.
The pharmacy was crowded that day, so to my embarrassment, many people overheard the following conversation.

Me: “I am back to get my prescriptions.” (Big smile)

Her: “Yes, I’d like to talk to you about that.” (Serious look)

Me:” umm…okay.” (uneasy smile)

Her: “You do realize that two of your medications counter each other. One can make you jittery, the other relaxes you.” (Very serious)

Me: “Well, the same doctor prescribes all of them, so I guess he knows… “(Confused look)

Her: “What exactly are you being treated for?”

Me: “Fibromyalgia. And, well, depression…I’ve been a little depressed since my daughter died.” (Want to crawl into a hole now. And getting a little irritated. Are pharmacists allowed to ask you such things? Why am I feeling so defensive!!)

Her: “I just saw a lady EXACTLY like you, and she was healed at a healing ceremony. Her having an unrepentant heart caused all of her symptoms. She had (whispers here) “a Down’s syndrome baby, and she felt like it was her fault. Maybe you should pray about this.”

Me: “That’s interesting. You don’t hear that every day. I think my receipt is ready.”(Thinking I may punch her holier-than-thou headlights out)

Her: “No, it’s still printing. Really, you should think about this.” (Big smile)

Me: “Uh-huh” (gritted teeth)

I left there absolutely furious. Cussing furious. Spitting nails furious.

Here is what I should have said.

Millions of people take these medications, but no one talks about it, because the stigma remains. So, I’ll say it out loud.
I LIKE MY ANTIDEPRESSANTS. THEY, LITERALLY, SAVED MY LIFE!!!!!

And maybe the most insulting part of this is that I AM a Christian! I believe in Healing. I also believe in medicine. I also believe that Christians can be depressed…and sick…that God USES illness and suffering and He doesn’t necessarily want all of us to be healed with the snap of a finger.

Depression is a bio chemical disorder. It is NOT a choice. Fibromyalgia is a pain syndrome. It is NOT an excuse to take pain meds.
If you don’t understand, then educate yourself. Don’t take it out on the person suffering these illnesses.

Okay. My rant is done. I will be praying this week. Praying for a forgiving heart, praying God’s wisdom for ALL of us, praying to get through another day in this crazy, crazy world!

Don’t forget to tune back in for April’s “featured kids”. I will be writing about them both here, and the foundationsite.

Thanks for checking in.

Sunday, March 14, 2010 11:45 AM CDT
I have written this before, but several people have asked me recently “What can I do when my friend has lost their child?” or “What do I say.”
I can only tell you that from my own perspective, from my own feelings, some words definitely helped more than others.
This is not to say I was angry when people said the “wrong” thing…if your heart is in the right place, it is pretty hard to say something “wrong”.
I always knew no matter what people said, they were just trying to help.

What to say:

1. I am so sorry you are going through this.
2. I can not imagine your pain and grief.
3. I am praying for you or How can I pray for you?
4. I love you.
5. (child) was so amazing. I will never forget him/her.

What to do:
1. Take food. Meals will probably be taken care of, so cold cuts, milk, juice, cheese, crackers….stuff they don’t have to prepare. Drop it off and LEAVE.
2. Touch base with them frequently, but give them NO pressure to reciprocate. Make it clear on the answering machine or email, that this is an “I love you and am thinking of you message.” Tell them there is no need to respond…you just want them to know.
3. Don’t forget about them.
4. Have no expectations. Some people want to go out soon, others want to hibernate. If you offer an invitation, make sure they feel no pressure to participate until they are ready.

What NOT to say:
1. This is God’s plan. (We know that already, but it feels like a TERRIBLE plan to us.)
2. She/He is in a better place. (To a mom, there is no better place than her arms.)
3. Do not compare the loss of a child to the loss of a grandparent, parent, sibling, or especially, a pet. While these are also losses, and these people all grieve, losing a child is unique.
4. At least he/she isn’t suffering anymore. (We know that, it doesn’t make the pain of our loss less, it just adds guilt.)
5. I couldn’t go through what you are going through. (Yes, you could, it isn’t like we get a choice.)
6. You are so strong. (I don’t feel strong. I feel sad, weak, and alone.)

I am keeping our Haley Vincent Foundation “featured kids” up here for all of March. You can also find them on our Facebook page. Feel free to “friend The HVF, or me personally…you can search me at bandcvincent@aol.com

Our featured kids include

Jaiden – this little 15-month-old girl had a liver transplant for biliary atresia. She is now battling a type of cancer specific to post transplant patients called PTLD.

Sammi- Sweet little girl who has a severe lupus-type illness, along with HLH, a disease of the blood. She recently had a bone marrow transplant, and her blood work is indicating that she may be rejecting the new bone marrow.

Aiden - Lots of you know Aiden. His mom Lisa is one of my very best friends, so I know his story intimately. He is my hero. He had a liver transplant as a baby for biliary atresia, and has since been diagnosed with dysautonomia; a condition that requires frequent hospital stays for circulatory issues.

Please pray for these kids and their families. They are amazing and brave, and no one should have to suffer like they have.

Thanks for visiting. Love and prayers to you all.

Friday, March 5, 2010 4:00 PM CST

Hello my friends,

I know it has been FAR too long since I have written here. It isn’t because I don’t want to; it’s more because it has all been said again and again. I miss her. I miss her. I miss her. But, I cannot express how thankful I am to have been a part of her life, and her a part of mine, even for such a brief time. Through my tears, I feel blessed.

Now, let me catch you up a bit on our family.

Nick is finishing his first year of college and getting ready to move out of our home into an apartment. I am going to miss him, like crazy….but I realize what an exciting time this is in his life.
He has just finished his training to become a “Young Life” leader, and was recently hired to be a camp counselor at Buffalo Mountain, a Christian based summer camp. I am proud of his own decision to stay a Godly young man and make his walk with the Lord a priority in his life.
But, don’t get the idea he is perfect. He is still a pain in my rear end. He recently deleted me as a friend on Face Book because he knew I would go nuts (which I did). I told him he had to add me back before he got another penny for gas money.

(Just a thought here, if you want to be my FB friend, I will add you. I always post on FB when I am updating here. You can look me up under my OLD email address bandcvincent@aol.com)

Logan is a full-blown teenager. His favorite hobby is pushing my buttons. It is especially fun when he can team up with Nick to get me, literally, begging for mercy.
He has joined a speech group at school, and they are about to compete at the state level. He loves to talk….he is his mother’s son. He is also doing well in school, and will get his learner’s permit in May (gasp)

(This is beginning to sound like one of those braggy Christmas letters I just love getting. Oh, come on. I’m joking!...I hear you all running to scratch me off your Christmas card list)

Kendall isn’t a baby any more ☹. She will be 11 in 3 weeks. (I am trying hard not to equate that with Haley being 11 when she died, but I do wish we could have skipped right to 12)
But, anyway back to Kendall. She is a monster. No, seriously, She IS a puberty driven, back talkin’, rule breakin’ , cute as a stinkin’ button little monster.

Case in point. I was scolding her for something she did, she yells at me “I didn’t DO anything!” and then as she is leaving the room she says under her breath “that you can prove.”
Other than that, she is great, a basketball star, finishing 5th grade, and got braces this year.

Onto other things….

Although I will continue to document my journey with grief, and my families every day life here, I also want to make this a communication spot for our Foundation.
If you are new to this site, or have been living under a rock, (lol) you can read about the Foundation here.

I’ll wait right here for you to go read about it.

Great, now that we are all caught up. Let me catch you up on all of our “new” news.

One new thing we are doing is “featuring” some of our miracle mail children. With their permission, of course, we will tell you their stories, and link you to their web sites. I encourage you all to become familiar with their first names, and pray for them. We can move mountains together!! Keep reading…the kids are featured at the bottom.

Another exciting new thing (well, exciting for me), we are working with a graphic designer to create a new logo. It will be on all of our correspondence. We are also printing brand new brochures to be more current with what is happening today.

As with all non-profits, we are always raising money. Much of our business meeting this week was devoted to fundraising ideas. We have lots of great ideas, the most important thing will be spreading the word…so please spread it. Email you friends, facebook it, whatever you can do to get the word out about our events.

For now, please mark your calendars for these two events

YARD SALE May 15th, with a rain date of May 22nd. We are accepting donations now. No clothes please. If you can help work this event please email me at cherylvincent4@aol.com

APPLEBEES PANCAKE BREAKFAST June 26th 8-10 am. If you can work this event, please email me….and just as importantly, if you would like to sell advance tickets, please email me. They are available to sell now.

I am going to try and quickly summarize our programs here. If you know someone who needs (or wants) either a miracle mail or a grief package, do not hesitate to contact me. It’s what we do!!

1. Miracle Mail _ we send boxes (to home or hospital) for children with chronic illness. We personalize the boxes to age, gender, and interests. Typically, each box costs us around $100.00
2. Grief packages- we send books and a remembrance angel to anyone who has lost a child.
3. CHOA – In Atlanta, we celebrate Haley’s birthday by throwing a party each year for the in patient children, everyone leaves with a present. We also partner with pastoral care to give children gifts.
4. RMH Tampa- We do an ornament decorating evening before Christmas each year for moms and dads to make their babies/children ornaments.
Future Programs include:

A college scholarship fund. It will be essay driven, with the topic being “Over coming Adversity.”

The Haley Vincent Music Therapy Program. This is my dream project, and I know it will happen in God’s perfect timing.

Our featured kids include

Jaiden – this little 15-month-old girl had a liver transplant for biliary atresia. She is now battling a type of cancer specific to post transplant patients called PTLD.

Sammi- Sweet little girl who has a severe lupus-type illness, along with HLH, a disease of the blood. She recently had a bone marrow transplant, and her blood work is indicating that she may be rejecting the new bone marrow.

Aiden - Lots of you know Aiden. His mom Lisa is one of my very best friends, so I know his story intimately. He is my hero. He had a liver transplant as a baby for biliary atresia, and has since been diagnosed with dysautonomia; a condition that requires frequent hospital stays for circulatory issues.

Please pray for these kids and their families. They are amazing and brave, and no one should have to suffer like they have.

Until next time, I leave you with this,

“Righteous Judge, you are right. Everything You do is right. Everything you have done in my life is right. I entrust myself to You because I know Your love and justice intermingle for my ultimate good.” Nancy Guthrie

“Should not the Judge of all the Earth do what is right?” Genesis 18:35

In His Love,
Cheryl

Thursday, November 5, 2009 1:04 PM CST

Today would have been Haley’s sixteenth birthday. Sixteen is such a big birthday, and I have really struggled these past few weeks with all the feelings and emotions I am experiencing.

But, before I get into that, it seems that a lot of people I know and love are struggling this week with their own suffering, and I want to acknowledge that.

It seems like when we open our doors and step outside, that our world feels perfect. Especially in Northeast Tennessee, we step out into blue skies, leaves falling, crisp, cool air…..and we forget, at least for a moment, that people are hurting all around us.
So, before I talk about my own – every-single-Fall- struggle, I want to let my friends know I am remembering them today too.

My dear friend Linda, who lost her brother very suddenly on Sunday. My heart is broken for you. You have been like a sister to me, and I wish I could take your pain away. I love you.

Another good friend lost her nephew in a car accident last week. I wish your sister didn’t have to know this grief. I am so sorry….for all of you.

Dan and Robin, facing a difficult diagnosis and treatment regimen. Dan wrote all the music for Haley’s songs, and is, without question, one of the most generous, kind, and gentle people I know. That this is happening to the two of you is beyond unfair. I wish I could change it. I am sorry. I love you.

Lisa, I am so sorry, not only that Aiden was hospitalized again, but that you have to live with that fear every single day. Aiden deserves to just be a little boy. Carefree. You deserve that too. I wish I could give that to you. I love you.

I wish wishes came true.

As you go about your business today, remember that inside some of those perfect houses you pass, are people who are hurting. We all know how much suffering happens in this world, but I think sometimes we forget that these are OUR people, this isn’t just some story on the news that we can disconnect from. We have to plug into each other.
As hard as it is, we have to let ourselves experience and share each other’s pain.

Sometimes I think I am crazy, to run our Foundation, to get attached to so many children who are suffering. To ride the rollercoaster with their families. It can be unbelievably hard. It can also be unbelievably rewarding. As painful as the sorrow can be, that is how sweet the joy is as well. To know we comforted. To know we helped, even for just a minute is a wonderful thing.

But, back to today.

Sixteen.
Would we have bought her a car today? Would we have hidden it with a big bow on it and surprised her? Would she and her best friends have had a big party at our house? Maybe we would have thrown a big surprise party, car and all. After all she had endured, just making it to 16, would have been reason to go all out.

Knowing Haley, she would have wanted a great big, dramatic fuss. Sort of. After the fuss, at the end of the day, she would have wanted it to be just her and a couple of best friends. She would have loved the fan fare, but she knew what was important. She knew what was real.

As I wonder what we would be doing today, I can’t help but reflect on how different our lives would be.

Every single thing would be different.

We would live in a different house. My relationships with my children would be different. Their lives would be so different, having their sister back….NOT having parents crippled with grief. My marriage would be different. My friends would be different. My personality would be different. My purpose in life would be different.

So many things would be different, that I cannot even imagine it.

To think of it that way, shines such a light on how families are truly forever changed, by the death of a child. It is the tragedy that keeps on giving. Nothing is ever the same again.

As sad as I am, I have made my peace with the grief monster. I know it will never go away, and I have accepted that I will just continue to live with it, and in spite of it. Find the joy, laughter, and happiness that are still in this world.
And our children…..what a tough life this has been for them. I hope they will grow up knowing how hard I tried, how very much I loved them. I wish I could give them their childhoods back.

Mostly, I hope that they will realize that knowing Haley, loving her, being loved by her, changed not only our lives, but also who we are.
I hope they realize that even as we were asked to sacrifice so much, God was blessing us all along the way. That even as He took away with one hand, He was giving with the other.

We are better people for it.

We are strong.

We understand that we have absolutely no control.

We are compassionate, in a way we never could have understood.

We understand that every Believer in the world will suffer at some point. There is nothing special about us.

We do not take one minute, one experience, one hug or kiss, for granted.

Our faith has been tested by fire, and it has survived…. it has thrived.

We watched Haley embrace her purpose in life…. she made us want to do better, be better.

We know appearances are not important.

We understand that life is messy.

We know that God keeps His promises.

We know Eternity is everything.

Sixteen years ago today, we had a 5 lb 5 oz little baby girl. We named her Haley. I held her, and nursed her. I looked deep into her deep blue eyes. I held an angel in my arms.

And for the next 11 years and 11 months, I held an angel in my arms.
Thank you God, for that gift, no matter how brief. Our lives were truly touched by an angel.

I love you, my sweet, sweet angel,

I am waiting for the day I see you again…………….

Please click this link to be directed to the beautiful video created for Haley's Celebration of Life.

Thursday, September 24, 2009 8:53 AM CDT

*I have fixed the jewelry link...let me know if there are any more problems!!*

So, the more I have to say…the more silent my voice seems to get.

I am sure a psychologist would have a field day with that. And speaking of psychologists….

Nick: “I’m studying for my psychology test.”

Logan: “OK,,, read my mind.”

Yep, folks. And that’s our GIFTED child.

So, Our “Celebration of Life’ ceremony for Haley is one week from today. It has been so very emotional to plan each step of this, but also very satisfying to know that each and every moment has my input and approval.
The dancers and singers are going to be awesome, and other than choosing music, I am leaving all of those performances in their very capable hands!
We will have several speakers, and I am really looking forward to hearing their unique perspectives on Haley, and how she impacted their lives.

Also, that night, we will be having a special video presentation that will combine, music, pictures, and interviews from many people who knew and loved Haley, including her family, best friends, her doctors, and others we met along our journey.

I mentioned on Face book, but I want to mention here as well, We Are One Designs, a jewelry company, is highlighting The Haley Vincent Foundation this month. A portion of the proceeds for any jewelry bought will go directly to The Haley Vincent Foundation.

If you want to wear something special to the service, many involved will be wearing either the braided bracelet or the cross necklace. Both are “signature items” for Haley.
The pieces come with small tags that can be personalized. You can put Haley’s name or “HVF” for the Foundation, or the name of your own loved one you wish to honor.

For those of you who don’t follow what the foundation is doing….here is a quick review…

We send out “miracle mail” packages to children who are chronically ill.

We send out “grief packages” to those who have lost children.

Once a year, on Haley’s birthday (nov. 5th) we have a “birthday bash” at the Children’s hospital in Atlanta, providing one of Haley’s Cd’s and a toy to each and every child.

Once a year, we have an ornament-painting event for the parents of children staying at The Ronald McDonald House in St Petersburg Florida. They paint Christmas ornaments and take them to their children and babies in the hospital.

AND starting this year, we will be awarding a local scholarship at DB high school. It will be an essay driven scholarship. The topic of the essay, “Overcoming Adversity.”

I hope to see you all at the Celebration Service…Celebration Church 6:30 PM October 1st.

I love you all…

And in honor of Haley…

“Better is one day in His courts, than thousands elsewhere.” Psalms 84:10

Friday, August 21, 2009 3:18 PM CDT

I know…..it has been FOREVER!!!!

I am sorry! Sometimes I don’t wonder though if you aren’t sick of me saying the same things over and over!

Right now, I am focused and working on a “memorial service” for Haley that will be held at Celebration Church here in Kingsport October 1, 2009 at 7:00pm. That is a Thursday night and will be the 4th anniversary of the day Haley left us. I hope to see alot of you there, everyone is invited.

I, along with others, will be speaking, so I have been thinking a lot. Thinking, while necessary, is not always all that much fun.

I get such random memories, and they come at me with such vengence. It is as if I am transported back in time. I can smell the smells, hear the voices, I remember the expression on a doctors face, and exactly how horrible and helpless I felt.
I remember how strong Haley always was, when I was crumbling inside.

Today, I was remembering, or re-living, as it feels to me, the day it was decided for sure they would put her on the waiting list for a liver transplant. We, of course, all knew it was coming, but, somehow that did not make it any easier.

I remember the everybody acting so happy, like this was a GOOD thing, and I was thinking…”What is WRONG with you people?” I wondered if everyone pretends so the parents don’t fall apart. I am not naming names, but some of them were down right chipper.

Only 20% of people with AIH progress to transplant. I was not happy to be in that minority.

Neither was I thrilled when Haley developed an aggressive form of lupus, and her doctor started using the phrase, “one in a million”.

Not happy when later she had a spontaneous brain bleed, and began to have symptoms of hepatopulmonary syndrome. All incredibly rare complications of either lupus or liver disease. She became less than one in a million……more like one in a billion.

In fact, once her doctor told me that after a lot of research, he could only find four cases like hers in the world…..and she was the ONLY child.

On the unhappy side of things, Haley’s life taught me that lightning can, not only strike twice, but over and over and over again.
I learned that God DOES give you more than you can handle. He can give you SO much that you are sobbing your heart out, in a fetal position, in your closet.
He expects SO much from us. Dealing with grief so unbearable, and yet, trusting….praising Him in ALL things.

Haley did that really well. She really and truly believed that God had a special plan for her life…and that no matter what, it was good. That God was in control, and that He was good.

And truthfully, I believe that too. In the deepest part of my heart, where the darkness can never invade, shines the light of Jesus.

I thought about Heaven the other day, and I wondered who I would see first…Jesus or Haley. And I wondered…..can I really admit that I want to see Haley just as bad as the One who saved us all. No, I can’t really admit that.

So, I think they will come to me together….hand in hand….Jesus will, one day, be the one to return my daughter into my arms.

Until then….
Cheryl Vincent

Wednesday, July 8, 2009 7:58 PM CDT

The Top Five Reasons Lisa Had To Leave TN In A Hurry

5. Mulch Madness

I have to give a little back-story with this one.

Two weeks ago, a huge dump truck backed into our driveway and dumped a BOATLOAD of Mulch. The first I knew of this was the “beep beep beep” of the trucks backup lights.
I called Bruce at work.
Me: “Did you order mulch?”

Him: “Yes.”

Me: “ That is a lot of mulch. How much did it cost?”

Him: “ $375.00”

Me: “I have to hang up now, I am having a stroke.”

Him: “It’s really good mulch?”

Me: “Is it made of gold?”

I said something about $375.00 being too much to pay for dirt…………and it turns out I was right, because my husband, the math-lete, ordered three times as much as we needed for the WHOLE yard. The pile of mulch is bigger than my mini van.

And not only did Lisa get to see and smell and fight her way around the mulch, she got to hear me complain about it the whole week. (I am STILL complaining.)

4. Fireworks

Come on! We live in the South, in the country, and I have two teenage boys, and a
husband who acts like a teenager. Of course we lit off dangerous explosives very near little children, one who was begging mommy (Lisa) to take him home.

3. New Words

Aiden yelling, “That sucked!” at above fireworks.

Hmmm. Wonder where he heard that one?

2. Teenagers

If fireworks and new words weren’t enough, living with teenagers reminds you how very, very stupid we all are.

AND THE NUMBER ONE REASON…..

1. Feeding the Needy

I talked Lisa into serving at our soup kitchen. The very first man we served greeted us with this……
“Hey you wh*res from the wh*rehouse.”

Lisa’s comment, “Isn’t he precious?”

Yep, she was RUNNIN’ back to Florida!!!!!

Miss you, Lisa!!

Thanks for checking in!

Cheryl

Thursday, June 25, 2009 3:17 PM CDT

It is time to take that last post off. First and foremost, as always, thank you for your love, concern, support, and friendship. Your responses are why I continue to vent here, and why it has always felt like a "safe" place to do so.

So a recap of the last few weeks. Nicks jeep is officially dead… it died the day before graduation, so we replaced that huge piece of junk with a van.

Now my husband and nick don’t see the point in having a van but ever since we traded in the other van I have missed the huge space (even though Nick can drive and will rarely ride with us) but it will be nice for trips.
For example we just got back from Atlanta to visit Mina (Thanks again, Mina!) and do some Atlanta stuff and we had so much room it was like a hotel room on wheels.

This van has been amazing it is so comfy. To fold the seats down you push a button its like amazing. But we left Nick here to man the fort. And he didn’t blow it up when we got back it was standing in one piece.
And he cleaned! It was so precious. Also Nick just turned the big 18 so Bruce and him decided it would be a good idea to get cigars and smoke them on the back deck which didn’t turn out like they thought it would.
Nick about died he hated it (so we know he isn’t going to be a smoker) and Bruce really didn’t like it they were coughing so hard…. so they learned a lesson the hard way.
So also Nick has stopped twice in the last week to help someone change a flat tire. Both have been little old ladies and he has been a guardian angel.

He’s really been a great kid, just the other day he had to take a test up at northeast which is where he is going to college and got a 99 on it didn’t study just showed up and Aced the thing. Also for those of you that want a relationship update Nick has been dating the SAME person for over 4 MONTHS a record and he really picked a good one ,she is so beautiful. Really a sweet girl.

If you all are wondering why this sounds like a Nick tribute, it is because he “helped” with the update.

Funny how we didn’t mention how he lost his allowance….ask him about that story some time!!!

We all love Nick ☺

Cheryl

Monday, June 15, 2009 5:16 PM CDT

I know I haven’t done this grief thing right.
I know I handled Haley’s death about as badly as anyone could have.
I know I fell apart physically, mentally, emotionally, and spiritually.
I know that everyone around me paid a high price for my grief.

What I DON’T know, is how I could have done anything any better.

I have done the very best I could do.
Has it been good enough? No.
Was I strong? No.

Do I wish I had had the strength to just jump back into life? Yes.

But, that is not how it was. That’s not how it is.

I have been judged pretty harshly. By people who have not been where I have been.

It is easy to say how you would handle things…..but until one of the things you love most in this life is ripped from your arms, FOREVER, you do not have a clue how you would handle things.

I loved that girl. I miss her. And I don’t know how to live “normally” without her.

Lots of people think they have the answers. But, unless you have lost a child….I don’t want to hear it. Because you do not know. You do not know what it is like to live every second of every day with such an enormous loss.

The last time I wrote here, it was a good day. Today has been a bad day. Today I am angry. And sad. Always, always sad.

Sunday, May 24, 2009 3:16 PM CDT

Saturday was a good day.

A really good day.

Not an I’m pretending-it’s-a-good-day day or even an it’s-a-good-day-but-I-am-so-sad-day day.

It was just a really good day.

It has been forever since I felt so physically and emotionally strong.

So, let me tell you about my day.

We spent the morning at Nick’s graduation ceremony. I expected the emotions I would feel about Nick, but what was unexpected is the pride and joy I felt as his classmates names were called, many of whom he has been in school with since kindergarten. As there names were read, I was having flashes of little girls with sticky hands, little boys at our home for cub scout meetings, first dances, slumber parties, trick-or-treating, chaperoning field trips, and a million other things.
They all looked so beautiful and grown up, and I realized all my thoughts were positive. These are good kids, and I am better for having had each and every one of them float in and out of my life.

Right after the ceremony, we were supposed to all meet at home, but I had an overwhelming urge to find…..and hug….my son.

So, after a brief search, I grabbed my little-big boy and hugged him for a very long time. Tears slid down my face, and he tried to let ago at least three times, but I held on for dear life.

So much love for this kid, who had it tougher than most. Through circumstances beyond his control, he started high school with a family in crisis. I look back and remember that his sister died just weeks after his freshman year began. We, as parents, could not be there for him, and he had his own grief to work through as well.

He has done an amazing job. I am so blessed to be his mom.

After I finally let him go, we headed home for the graduation party. Lots of family and friends were there. It was so relaxed and fun. The weather was perfect, the food was great, and so many people we love were there.

I thought about Haley many times. As always, there was an empty seat.

But, Saturday was Nick’s day.
And, it was a good day.

Now, because there is always a story…..my dad and stepmom drove from Denver to Mass to TN to be with us. Around Penn, Vel started feeling bad. They arrived in TN around dinnertime….Bruce went to the hotel to check on her, and he immediately took them to the hospital. Four or five hours later, she was having her appendix taken out.

I was visiting them in the hospital when Nick called. His jeep had broken down, so off I went to find him. The jeep is a gone-er. The engine block is cracked.

By now, it is 8pm and I still haven’t shopped for the party for the next day. But, we got everything done.
And, proving herself tough as nails, Vel went to the graduation ceremony just a day after her appendectomy.

Hoping for more good days,
Cheryl

Monday, May 18, 2009 2:57 PM CDT
I know this is cheating……but I found this so inspiring. This is an article about Jeremy Camp.

It wasn’t long before Camp was leading worship at the school and all over Southern California. One of those gigs would even lead him to his future wife and a relationship that would shape him in ways he couldn’t imagine. He was playing for a small Bible study group in the San Diego area where he was living when he noticed her. “I started to play a worship song and she raised her hands high above her head to praise God,” Jeremy recalls. “I was in awe of this woman who obviously loved Jesus so much.”
They talked afterward and Jeremy and Melissa spent that summer getting to know each other better through church events, prayer meetings and college group activities. So it came as quite a shock when, after four months of dating, Melissa suggested they break up. Camp couldn’t find fault with her reason, though. She said she needed to spend more time with the Lord, that she felt He was preparing her for something.

Jeremy nursed his broken heart on the road, traveling around the country and overseas, introducing his original songs to anyone who would listen. Inspired by artists such as Dave Matthews, Goo Goo Dolls, Matchbox Twenty, Pearl Jam and Creed, his music made a connection with audiences as his lyrics pointed them to the God Jeremy faithfully served.

While his personal life wasn’t going exactly the way he had hoped, his ministry was thriving.

And then Jeremy received a call that would change his life forever. He was summoned to the hospital to see Melissa, then 20, who had just been diagnosed with ovarian cancer.

“I walked into the hospital and she was just beaming,” Jeremy recalls. “You could tell she wasn’t bummed out. She was just trusting the Lord. It was amazing.” During that same visit, Melissa shared a unique perspective with Jeremy. She told him if she ended up dying from her disease that as long as her death led one person to Christ that it would all be worth it.

Despite her upbeat attitude, Jeremy left the hospital confused and upset at seeing someone he cared about in pain. Once in his car he found himself making a strange promise. “I drove away saying, ‘God if You want me to marry Melissa, knowing she could die from this cancer, then I will. If she tells me she loves me, I’ll marry her.’” It seemed like a fairly safe bet. They had never spoken those words to each while they were dating, why would she say them now?

But during his next visit she did just that so Jeremy went away and fasted and prayed. The next time he saw Melissa, she was going through chemotherapy and was days away from losing all her hair. As they talked, Jeremy knew what he wanted to do. “I told her I loved her and said, ‘let’s get a ring tomorrow.’”

Five months later, with Melissa’s hair growing back and her feeling better, the young couple married in front of a thousand well wishers. Unfortunately, their happiness was short lived. During their honeymoon, Melissa started having stomach problems and when they returned the doctor delivered the news they dreaded. She had mere months to live. On Feb. 5, 2001, Melissa went to be with the Lord. As she took her last breath, Jeremy stood with her family and began worshipping God singing the same songs they had played so often for Melissa during her hospital stays. “I didn’t want to do it,” he says, “but I knew I was learning something about obedience.”

Melissa’s life and death changed Jeremy’s perspective on the music he makes. “Watching Melissa go to Heaven made me realize what’s important. Music is not my life. Christ is my life. The only thing that really matters is what we do for Jesus on this Earth, and as a result of what I’ve been through, I express even more the goodness of God and how faithful He is.”

One of those songs that reflects that perspective is “I Still Believe,” the first song Camp wrote after Melissa’s death, a declaration of faith from one who has walked through the fire. Also included on his BEC debut is “Walk by Faith,” a tune he composed on their honeymoon. Looking back now, Camp feels God knew he’d need that musical reminder in the months to follow. “I didn’t know what the song was for at the time, but I look at the words now and I can see God was preparing me for the path I’m now walking.”

Jeremy’s the first to admit it hasn’t been easy road. “It’s not like you just bounce back,” he says. “But God gives me the strength and I want to encourage others who are struggling.” And there’s another motivation. Jeremy knows with each song that he sings, he’s helping that wish Melissa made that day from her hospital bed, for her death to impact others for Christ, to come true.

June 2002

1 2 3 4 5

www.sandrasteeth.com
Ads by Google

Thursday, April 23, 2009 11:22 AM CDT

Yesterday Bruce and I went to pick out a gravesite and headstone for Haley. We have known for some time that we wanted to do this, it is just such an impossibly difficult “errand” that we managed to put it off for several months.
But we want it all in place for Haley’s memorial service on October 1st, and we wanted to custom design the headstone, so we had to get it done.

The cemetery is only a mile or so from our house and it is actually a very pretty and peaceful place. There were a lot of things to consider….all of them painful.
For one thing, part of the cemetery is on a road that we pass every day, Bruce takes it to work, the boys to school, and me, whenever I go anywhere. Bruce didn’t want it to be visible from the road, he says he would feel like he should stop everytime he passed it, like he couldn’t just drive by and NOT stop.

I get that. So, we only looked at the back half of the cemetery.
I can’t even tell you how much I hated this. I was in a super foul mood, I hated the salesman, I hated his car, I even thought he had bad breath…. I hated all the terminology, I hated the inside of the funeral home….I especially hated the casket room, and I was thanking God I never had to pick one of those out. I just wanted to find the perfect spot and GO. But, this is a crowded cemetery, like most I suppose, and I thought we would find an “ acceptable” spot rather than a “perfect” one.

And then the man pointed to one of the “Gardens”. He said that one is the “Garden of the Good Shepherd”, and I instantly loved that name. I said I want to look there.

And we found the perfect place. I felt peace. And a lot of sadness. But, peace. Her place is right next to a walking path with cement benches, and a statue of an open Bible with the 23rd Psalm displayed. It is easy to get to, and easy to find. You can’t see it from the road, but it is at the top of the hill, and the view is really pretty.

So, that part is decided. The whole thing is unbelievably surreal.

Next up, the headstone. We are trying to superimpose a drawing that Haley did of clouds and a rainbow, along with a picture of her and LOTS of writing. So much writing, that it is called a “ledger headstone”. So, we are working on that now.

So, it all really sucks, but it it so important to me to get all of it….right.

For those of you wondering about the logistics…..we had Haley cremated, her ashes are with us, and they will remain with us. Her grave will be empty. I love the symbolism of that. After all, aren’t all of our graves empty?
We are doing this as a memorial, and for a place for us to visit and remember, and for anyone else who wants to visit and remember.

Anyway, all of this has exhausted me.

Exhausted or not though, I have to remind all of you about the Pancake Breakfast at Applebee’s on Sat. Please try and come….our foundation needs you!! It is between 8 and 10…and our whole family and many friends will be there cooking and serving.

Love you all,
Cheryl

Sunday, April 19, 2009 4:27 PM CDT
Those wonderful Church Bulletins! (Courtesy of my dad)

The Fasting & Prayer Conference includes meals.

The sermon this morning: 'Jesus Walks on the Water.' The sermon tonight: 'Searching for Jesus.'

Ladies, don't forget the rummage sale. It's a chance to get rid of those things not worth keeping around the house. Bring your husbands.

Remember in prayer the many who are sick of our community.

Smile at someone who is hard to love. Say 'Hell' to someone who doesn't care much about you.

Don't let worry kill you off - let the Church help.

Miss Charlene Mason sang 'I will not pass this way again,' giving obvious pleasure to the congregation.

For those of you who have children and don't know it, we have a nursery downstairs.

Next Thursday there will be tryouts for the choir. They need all the help they can get.

Irving Benson and Jessie Carter were married on October 24 in the church.
So ends a friendship that began in their school days.

A bean supper will be held on Tuesday evening in the church hall. Music will follow.

At the evening service tonight, the sermon topic will be 'What Is Hell?' Come early and listen to our choir practice.

Eight new choir robes are currently needed due to the addition of several new members and to the deterioration of some older ones.

Scouts are saving aluminum cans, bottles and other items to be recycled. Proceeds will be used to cripple children.

Please place your donation in the envelope along with the deceased person you want remembered.

The church will host an evening of fine dining, super entertainment and gracious hostility.

Potluck supper Sunday at 5:00 PM - prayer and medication to follow.

The ladies of the Church have cast off clothing of every kind. They may be seen in the basement on Friday afternoon.

This evening at 7 PM there will be a hymn singing in the park across from the Church.
Bring a blanket and come prepared to sin.

Ladies Bible Study will be held Thursday morning at 10 AM.
All ladies are invited to lunch in the Fellowship Hall after the B. S. is done.

The p astor would appreciate it if the ladies of the Congregation would lend him their electric girdles for the pancake breakfast next Sunday.

Low Self Esteem Support Group will meet Thursday at 7 PM. Please use the back door.

The eighth-graders will be presenting Shakespeare's Hamlet in the Church basement Friday at 7 PM.
The congregation is invited to attend this tragedy.

Weight Watchers will meet at 7 PM at the First Presbyterian Church. Please use large double door at the side entrance.

The Associate Minister unveiled the church's new campaign slogan last Sunday: 'I Upped My Pledge - Up Yours'.

Wednesday, April 8, 2009 8:22 AM CDT

I don't think it should be legal for newspapers to knowingly print things that are untrue.

Even if it is April 1st.

They have a civic responsibility to uphold truth in journalism. They should not stoop to the level of practical jokers.

And this has nothing (NOTHING!) to do with the fact that I was duped into believing that the body of Daniel Boone had been found, complete with coonskin cap and forensic evidence that he had been treed and killed by a bear.

It has nothing to do with the fact that I then relayed this story to Bruce, while he grinned at me (with a really stupid look on his face), and said things like "Really!" and "Tell me more."

I think newspapers, and my husband, shou ld be a little more mature.

In other news...

I got a horrible flat tire the other day. A van driving towards me hit a hunk of metal debris, flipped it into my tire, causing a huge gash. It was quite dramatic. I guess I am lucky it didn't hit my windshield.
I did see someone, just seconds before this happened, running around the road trying to collect junk that fell off his pick up truck.
If you have to haul stuff, buy a tarp people!! That is dangerous! Plus, that stupid tire,which was relatively new, cost me over $200.00 to replace. That is a lot of diet coke I could have bought! :)

Anything else going on around here? Truthfully, not much I want to talk about today.

Life is hard. It doesn't ever get any easier. I don't think it ever will.
It's not a choice for me. I wish it was.

That doesn't mean I never feel happiness or have fun. Of course I do. It just means that in all I do, or have, or feel, or experience, it is always, always tempered with sadness.
With a loss that is profound, with an absence that is palpable. It will always be this way for me.
It is the price I pay for having loved someone so completely.

Until next time,
Cheryl

Saturday, March 14, 2009 8:07 PM CDT

Random Thoughts

1. The meeting with “Mr. Too Tight Pants” was extremely anticlimactic. In fact, I wasn’t even there.
God arranged, I am quite sure, for me to be sick with the flu, and Bruce (coincidentally) to be off work. Bruce never takes a day off work, so it was quite the fluke.
Anyway, Bruce gets there and it turns out the man was “Mr. apologetic for bothering you man”, someone who Bruce knew from work AND happens to go to our church. So, probably it was a good thing that “Miss potty mouth mood swing woman” wasn’t able to make the meeting.
So, all is straightened out and no one has to go to jail!

2. Remember how I said “Grey’s Anatomy” was on my “never, ever going to waste my time watching again” list?
Well, there is now a new show on that list too. “The Bachelor”. Never, ever again.

3. My new doctor is making me go on a new toxin-free diet to see if that helps with
my pain and other symptoms.
This doctor has lost a bit of credibility with me by saying, among other outlandish things, “I can cure cancer”. He also tried to get me to let him run a laser beam light over my joints to remove the toxins. Uhhh… No, thanks…you freak!!!
But, I HAVE to do the diet…because they are black mailing me. No diet, No pain pills. I can see why people turn to the streets…..
So, this diet, that is going to cure me, consists of a fruit smoothie every day. I blend a banana, an apple, carrots, blueberries, and strawberries, with ice. ONLY fresh fruit…and ONLY ice. Do you know how expensive fresh fruit is?
So, after my $20 breakfast, I can have hard boiled eggs, grilled chicken, leafy greens, and two servings of carbohydrates so long as it is not processed, potatoes, rice, corn, or anything else that doesn’t taste like cardboard.
I have to say, this hasn’t improved my grumpiness.

I don’t like people telling me what to eat. That’s why I became a grown-up!!!!!

4. I would kill you for a Ding Dong.

5. I may still need that Lexapro.

6. On a lighter note, we leave for Florida tomorrow. We are spending a week at the beach. Right where my friend Lisa lives!! Yea!! I just hope this visit stays uneventful….boring is good.

See you at the beach,
Cheryl

Thursday, February 19, 2009 11:12 AM CST

Well…the mood swings are still around, although, with much effort, I have been able to keep the swearing to a minimum this week. Only two slip ups, and one came immediately following Kendall punching me (accidentally) in the jaw, and breaking my tooth. I think even God understood that one.

I do have an interesting appointment coming up. It all began with a message on my answering machine.

“To the parents of Logan. Logan has had too many absences this school year. You need to come to “X” address at 3pm on Friday to meet with Mr too-tight pants to discuss this.
Failure to show up at this meeting will result in either a $50.00 fine for each absence or jail time.”

Oh, yes they did.

I really cannot WAIT for this meeting. I get to explain to Mr Too Tight pants MY attendance policy.

I don’t send my kids to school when they are sick. You should be thanking me.
Do you realize that 50 otherwise healthy die every year from the flu? They DIE. As in forever, no second chances. And that is just the flu. Kids die from strep…they die from pneumonia…they die from meningitis.

I guess people don’t believe that actually happens because it hasn’t happened to them yet.
YET.
It could happen to you, believe me, it can.
But, your kid won’t be getting it from MY kid, if I can help it….because I keep my kids home when they are sick.

So, that is MY attendance policy.

Now that I have expressed how idiotic the “send your kids to school at all costs” policy is, let’s talk about Logan specifically.

He is about to graduate middle school. In those three years, he has gotten nearly all “A”’s. The occasional “B” has slipped in.

He has scored perfectly in several areas of the TCap exams, making him eligible to sit for the ACT last year AND to be offered a three week college course at ASU this summer. He is taking a class called “Design Physics” I don’t even know what that means!

He always does his homework, He has made up every single paper or test or assignment he has ever missed.
He has been recommended for AP classes across the board for high school next year.

Yes, Mr Too Tight Pants…CLEARLY we are doing something wrong.
Clearly, this is an at risk child.
Clearly, I should spend some time in jail for not caring about my son’s academic future or success.

Here is the real issue. The schools lose some federal money when students are absent. I am sorry about that. But, I refuse to put the school’s budget problems ahead of the well being of my child.

Don’t you wish you could be a fly on the wall on Friday?
I am going to, seriously, pray about this to keep my cool while getting my point across.

Next subject….next mood swing.

I watched American Idol last night, and when the little girl whose name I can’t remember, made the top twelve, and the showed her daddy crying with such pride.
I just completely lost it.

I thought about how much Haley always wanted to be on American Ido, and how I would never be that parent watching her achieve her dreams. How very sad that made me.

I wanted to live her dreams with her.

And as proud as I am of what she did while she was here, I am so sad when I think how much more she could have done. How much more she would have done.

Today, that just seems extremely unfair.

Last time I mentioned that my ummmm humanness shouldn’t be mistaken for a lack of trying to do better…to be better. The next day, I received this poem, written by Maya Angelou

A woman's heart should be so hidden in Christ
That a man should have to seek Him first to find her.'

When I say... 'I am a Christian' I'm not shouting 'I'm clean living,'
I'm whispering 'I was lost, Now I'm found and forgiven.'

When I say... 'I am a Christian' I don't speak of this with pride.
I'm confessing that I stumble and need Christ to be my guide.

When I say... 'I am a Christian' I'm not trying to be strong.
I'm professing that I'm weak and need His strength to carry on

When I say.. 'I am a Christian' I'm not bragging of success.
I'm admitting I have failed and need God to clean my mess.

When I say... 'I am a Christian' I'm not claiming to be perfect,
My flaws are far too visible, but God believes I am worth it.

When I say... 'I am a Christian' I still feel the sting of pain...
I have my share of heartaches, so I call upon His name.

When I say... 'I am a Christian' I'm not holier than thou,
I'm just a simple sinner Who received God's good grace, somehow!

Humbled by God's Grace,
Cheryl

Monday, February 16, 2009 3:56 PM CST

In addition to whatever anti-depressant effect lexapro has, it also apparently inhibits the part of your brain that swears.
Because since I have been off of it, words have come out of my mouth that I have not said in 20 years.
I expected to be more emotional, more teary (which I have been), but the mood swings…from happy to sad to ANGRY in just seconds. It’s a sight to behold.
I can especially let loose on Nick, who can totally push my buttons.
I have even let my fingers do the cussing recently, if you know what I mean.

This is all pretty out of character for me, and I am hoping my brain settles down soon.

The good news is I feel much better physically. I even feel like going out and doing things…of course, my potty mouth isn’t fit for public, so it’s a bit of a dilemma.

The other night, after screaming at my family for, (ONCE AGAIN AFTER I HAVE ASKED THEM A MILLION TIMES TO TAKE OFF THEIR SHOES), tracking mud in the house, I told Bruce I was going upstairs to take a Xanax, Bruce said, quite calmly, “I think you should take two.”
He wasn’t even kidding.

Last night, Nick locked his keys in his car. We get this phone call at 10PM from Nick.
Our friends were over visiting and were a little taken aback at our whole “Oh, well” attitude.
The real problem was that Nick was SUPPOSED to be at Gooch’s. Instead he was somehow in the driveway of a pretty girls house. Hmmmm.

He said he was dropping a magazine off for her on his way to Gooch’s.

So we said, well too bad for you…figure it out.

And very soon, Nick turned up, at our front door, having been driven home by the fair Kayla, to get his spare keys.

See, he figured it out.

We weren’t being bad parents; we were testing his problem solving skills.

Saturday we went to Kendall’s basketball game and then Saturday night church.
I love Saturday night church.

And apparently, I need a little church these days. ☺

In fact…this last month

I have gossiped more than usual.

I told a lie.

I have sworn at least ten times.

I watched an “R” movie….that should have been rated worse than “R”. They should have an “R-plus” or something.

I feel like I should go to confession, and I am not even Catholic.

And I know what you’re thinking…

“Confess here, Confess here!”

You’d like that, huh? All my dirty little secrets. I bet my readership would go waaaay up!!

But, all of that is between me and God…..and possibly the IRS.

I’m Kidding!!

Don’t listen to anything I say or write. I am un-medicated and a tiny bit crazy right now.

On a different subject, thank you all for signing my guestbook, and for the emails and personal conversations about this web site.
I have felt the love and friendship…and I promise not to guilt you guys about signing anymore ☺

Of course, after this entry, I may lose all of you guys anyway… I am really not myself.
OR possibly too much myself.
Hey! Maybe there is such a thing as too much Cheryl!!!

Okay, I have something serious to talk about with everyone. We are planning a memorial service for Haley. Really, more like a day of remembrance and celebration of her life.
A lot of really cool things are beginning to come together, with the help of our friends at Celebration Church.
As it gets closer, I will share details. The date will be October 1, 2009. The fourth anniversary of Haley’s Journey to Heaven.
One thing we will be doing is having a few, very short (5mins or so) speakers. People who feel led to share a Haley story should contact me. I will also be including a few short emails from people touched by Haley’s life, either before or after, her death.
I may read those, or I may ask our pastor to.

October 1st is a Thursday. The time is to be announced. Friday morning we will have a small, short ceremony at the cemetery to unveil Haley’s headstone.
I hope some of you can make it to one or the other.

I have shared in this entry how completely irreverent I can be sometimes….please don’t interpret that as a lack of love or respect for God.
I love God. I love Jesus. And, I, like everyone, fall short in acting Christ like. Some days, I fall shorter than others.
But, each day I wake up, and vow to do better, to try harder.
That is all any of us can do.

Vowing to do better tomorrow,
Cheryl

Monday, February 9, 2009 12:12 AM CST
Last week, I was SO mad after watching “Grey’s Anatomy”. I chose not to write about it, though, because I recognize that I have a lot of unreasonable emotions…and right now, it seems to be all abut anger. I recognize that I am not able to really be angry about what I am really angry about, so I project it onto other things….and sometimes, other people.

But, after watching THIS week’s episode, well I need to let it rip.

So, to the writers, producers…whoever…involved with this show…please, just tell me this.

WHAT IS SO FREAKIN’ ENTERTAINING ABOUT KIDS DYING!!!???

And yes, yes, I GET that it is a medical TV show…..but for anyone who watches it, we all know…we watch it because of the relationships….the doctors in the linen closets….all of that trash. The medical stuff is secondary.

Why can’t they write about old people?

Seriously…the unrealistic way they portrayed the kid who needed a liver transplant last week was SO stupid. Just stupid.

And then this week, a 9 year old needs a heart transplant, and they show her screaming while undergoing a painful procedure.
I didn’t wait to see if they miraculously pulled this one off too, I just shut off the program.
And I will never turn it on again.

I want escapism from TV, not to see kids suffering and dying. I know what that triggers in me, and I know I am not alone.
How insensitive. How ghoulish.
No more second chances ‘Grey’s Anatomy’…you are off my TiVo list for good.

And I hope to those who find that entertaining that you never have to watch helplessly while your little one suffers. While one of the people you love most in the whole world slips away.

Whoever writes that crap is sick in the head, and I do not know how they sleep at night.

I will stick to watching Jack Bauer torture the bad guys. If he starts torturing children, I may have to throw that TV out for good.

Reading a good book today instead,
Cheryl

Friday, February 6, 2009 4:32 PM CST

Turn on your speakers…good music is playing

They should have detox centers for people coming off anti depressants. The withdrawal symptoms….are TERRIBLE!!!!
I watch “Celebrity Rehab”, and I feel exactly like those people! Minus the complete insanity, of course.

So, to catch you up. The pain management doctor wants to take me off the antidepressant (Lexapro) that I have been on for four years. He thinks side effects from that medicine may be causing some of my symptoms.

I have been weaning off for a few weeks, and have been completely off for about 10 days, but am still experiencing withdrawal symptoms. Nothing like the beginning though, I am through the worst of it.
I just hope he doesn’t want me back on it after all this.

I was supposed to have a lumbar puncture this week, but that has been postponed until after my visit to the Rheumatologist at Vanderbilt.

Anyway....enough of all that.

Although, I don’t update as much as I used to, I read my guestbook nearly everyday, and it was so slow recently.
Days went by with no messages, and I started feeling sorry for myself. I called Lisa, and she was NOT sympathetic.
She said it was because I only update every two months! Well, I went back and looked and I update every month (almost) and the last time was less than three weeks ago.

It makes me wonder, what compels people to leave messages? Certain dates for sure. In fact, I had several birthday messages (Thanks!) Also, the level of friendship. People I have forged relationships with, either in person or online, tend to stay in touch.

But, while I was sorting all of this out in my mind, I asked myself when do I sign guestbooks? Certainly, I do not sign even a fraction of those I read. For me, it is either friendship or relate-ability. I tend to sign the pages of those who have lost children. I try to offer companionship in grief.

And, I will bet it is the same for you. If your child has cancer, you read and sign those pages most often. If your child has liver disease, those are the people you offer the most support to, because you have walked that road.

It makes perfect sense to me, and makes me feel better.
I don’t want anyone to be able to relate to me.
I hope and pray you never, ever can.

But, I confess, the occasional word of encouragement is nice. It keeps me writing. It makes me feel valued.

I had this whole thing in my head about PTSD I was going to write about….I’ll save that for next time.

Instead, I will tell you what is going on here in the Vincent house.

We have had cold, snowy weather. School was closed all week, which is fun for about….oh, about an hour. And then everyone is bored and picking on each other. And nobody has any dry socks, and building a snowman only LOOKS like fun when you watch it on TV.

And, I am making all of it worse because snow days bring out the Martha Stewart in me. I want to build a fire, have cocoa, make homemade soup, play board games, and watch a movie.

My children, on the other hand, want to play outside every 60 minutes for 5-minute increments, putting on clean, dry fresh clothes each time.

They want to track dirt and snow into every room of the house.

They want to drink root beer and watch a TV show that is called, I kid you not, “Holy Sh*t”.
And they, and again…NOT making this up, want me to make the “good” soup, “the kind from the can”.

They want to wrestle in the house.

And then, when they get bored, they beg me to let them drive several miles away to go sledding. Never mind that the schools are closed BECAUSE the roads are bad.

I said “No.” and they made me pay for it.

We did try to have a fire, but we forgot the flue, and had to pour cups of water on it as the smoke filled our house.

Is it any wonder I am in favor of year round school? These children do not need idle time. And I am getting too old.

Speaking of getting old, I turned 46 a few days ago. Yep, and in our house forty is NOT the new thirty…. it is the same old 40. In fact, 40 may be the new 50 in my world.

I am going to leave you with words from a great song by MercyMe. I may even be able to get it on my playlist. If not, go to itunes and download it…it is truly a great song. It’s called “Bring The Rain”

“Bring The Rain”

I can count a million times

People asking me
How I Can praise You

with all that I've gone through

The question just amazes me

Can circumstances possibly

Change who I forever am in You?

Maybe since my life was changed

Long before these rainy days

It's never really ever crossed my mind

To turn my back on you, oh Lord

My only shelter from the storm

But instead I draw closer through these times

So I pray

Bring me joy, bring me peace

Bring the chance to be free

Bring me anything that brings You glory

And I know there'll be days

When this life brings me pain

But if that's what it takes to praise You
Jesus, bring the rain

I am Yours regardless of

The clouds that may loom above

Because You are much greater than my pain

You who made a way for me

By suffering Your destiny

So tell me what's a little rain

So I pray

Bring me joy, bring me peace

Bring the chance to be free

Bring me anything that brings You glory

And I know there'll be days

When this life brings me pain

But if that's what it takes to praise You
Jesus, bring the rain

Cheryl

Friday, January 16, 2009 5:35 PM CST

I don’t usually make New Year’s resolutions…..WAY too much pressure, but this year I have a few.

1. Eat better, exercise, and lose twenty pounds.
2. Stop procrastinating.
3. Buy an answering machine, and actually listen to the voice mails.
4. Stay caught up on emails.
5. Remember to include Logan’s name on our 2009 Christmas card.

How am I doing so far? Last night we ate homemade meatloaf, mashed potatoes, and salad (See? Salad’s good.) For desert, Rocky Road ice cream.
I was so disgusted by that display of gluttony that we repeated it tonight in the form of leftovers.

What’s next? Procrastination…….I started writing this on Jan 3rd…soooooo…

I DID buy an answering machine, and I AM listening to my messages. I haven’t called anyone back yet, but baby steps here! I did make the mistake of letting Nick record our outgoing message…. “ Hi. You have reached the number you have dialed. Leave a message….or don’t. And remember, Jesus loves you.” He added that last part because I told him he was being rude.
I need to take that off my machine, but…..(See#2)

Emails…..I have 299 unread messages….I am determined to not let it get to 300. Clearly it will take a little while to get that under control…..(See # 2)

And finally, Logan. Well, I have until November to remember t put Logan’s name on this year’s Christmas card.
For those of you on our Christmas card list, we did not disown Logan. It was a typographical error (on THEIR part, not mine). Or maybe it’s middle child syndrome. I can’t blame it on bad grades, since he gets all A’s (brag, brag)
Oh well, maybe I’ll put his name on twice next year.

In other news…..my new doctor (who I really like!) has given me the official diagnosis of Fibromyalgia. I really hate that. It is so vague. Like an “invisible illness”. Except it is very real. He also felt I had a developing neurological problem, which he said could either develop into something (like MS) or just burn itself out.
Time will tell, I suppose.

Not much news from around here. I haven’t been doing much work with the Foundation lately. I am just so worn out, and it seems like it is so hard to get things moving…and staying going. We still answer any referrals we get, but things have been slow. I have had such big dreams, but the obstacles are always bigger, somehow.

My grief journey isn’t much different. I could write a book about it, but most of the time it takes all the energy I have just to live it. I miss her. I tried to talk Kendall into doing a girls day…a mani/pedi/lunch/movie day. She would rather go to the basket ball game with her daddy. Don’t get me wrong, I love her exactly how she is, but I am a girly-girl, and I miss having a little girl to do those things with.
Our compromise is a basketball game and a movie. I think we will see “Marley and Me,”

As always, thanks for checking in….and please send your prayers out to Zachary’s family who are spending their first nights without their only child.

This world is a hard place.

Believing in a better place,

Cheryl

Thursday, January 1, 2009 8:59 PM CST
We are in Phoenix, Arizona. It has been an eventful, and exhausting, few days.
We are here to watch Nick’s band compete in The Fiesta Bowl band competition. We decided to make a family vacation out of it. My dad is even drove here from the Denver area to spend some time with us.

Sometimes I think, when we travel, we should have cameras follow us and film a reality TV show. We could call it “Fish out of water”. In this episode, the country bumpkins go West!!!!!

I really hate to travel.
I don’t like flying too much.

I get car sick.

Not a big train fan.

And, I really hate boats. (And with SOME reason, apparently, since TWO people have fallen off cruise ships, just this week.)

But, I like the experience of BEING new places, just not getting there.

I need to be able to teleport. That would be my way of traveling.

We watched the preliminary competeion this morning, and DB, of course, made the finals, which are happening as I type this. Kendall and I stayed back at the hotel. I haven’t been feeling great, but I am with them in spirit. Go DB!!!

We visited their hotel last night, and six boys in a hotel room….I saw things that could blind a lesser person.

Actually, we were there as they got all dolled up for their New Years Eve party, and they all looked SO handsome. They are all great kids….even if they are incredible slobs.

I’ll, ( and when I say “I” I mean ”Lisa” will post pictures of them, and their messy room, when we get back.

Our first day here we visited the mountains….So beautiful…very different from “our” mountains.
In the car, Logan and I had a conversation about stereotyping.

I told him it was wrong to make assumptions about people based on race, or religion, or what region they lived in.

Me: “That is like people thinking we are uneducated and missing teeth because we live in east Tennessee.”

Kendall, piping in “I just saw a man back there who only has one tooth.”

Long pause

Logan: “Maybe he’s from Tennessee.”

Anyway…….

Phoenix is a great city…as far as big cities go. I am not a huge fan of five-lane traffic all the other stuff that comes with city living.

But, all the people here have been so warm and welcoming. We have felt really safe. And we have done some really cool things.

Just the other night we ate at a TGIFriday’s that is built into Chase Stadium, where the Diamondbacks play. We ate over looking the field. It was SO cool, although we, of course, didn’t bring our good camera….but we have a few cell phone shots.

Tomorrow we are visiting Sedona, and specifically, “The Chapel on the Hill”, a catholic church that is among the first built in this country. I hope I remember the camera!!

Thanks for checking in…you all are SO patient with my slow-coming updates!!

Cheryl

Tuesday, December 9, 2008 6:44 AM CST

OK at the request of Cheryl and the demand of Nick I am updating and taking the page hostage. I spoke to Cheryl yesterday and half slurring from the pain of oral surgery, it was the least I could do. Not to mention HER computer is still in Knoxville getting "fixed". Seriously Cheryl, that Mac is forever broken!

I have the priviledge of sharing some stuff that she can either 1) correct me if I am wrong or 2) fill in the blanks later.

Haley's Birthday.

It was over a month ago, but it hasn't been touched on here. I will tell MY version. Haley's Birthday this year was a tad different. Ususaly the family and my family are in Atlanta throwing our annual party for the kids. We do it in rememberance of Haley and how her spirit was so giving. This year, after severe allergic reactions and some confusion in the schedule we decided that we would let one of Haley Vincent Foundation's amazing board members take the lead and run the show. After all it is so hard on Cheryl to be in the hospital and making that drive. It just is, I am sure you can imagine. So Lauren held the party and Cheryl and family actually were able to just "be" whatever it was they would be on the anniversary of the birth of their daughter.

For about a year Kendall had been telling her Mom and Dad that she wanted to be Baptised at their church. Both Bruce and Cheryl wanted to make sure that it was something SHE wanted, that she was making this choice for Jesus not becuase she felt she had to, but because she wanted to. But about two weeks before haley's Birthday Kendall decided she wanted to get baptised ON Haley's Birthday. Of course that just made me smile and cry thinking of it. What a special way to honor Haley. It looked like it wasn't going to happen, but on Saturday Cheryl told me about how not only Kendall, but the ENTIRE family was Baptised on Haley's Birthday. Cheryl described as she was laid into that bath of water how she was emersed in it then pulled out, how it was like a rebirth for her. How she just felt the Holy Spirit say to her, that it was a new Beginning for her and her time on Earth till she saw Haley again. She said she couldn't really decribe it, but she said, it was like so much pain had washed away.

Afterwards they had balloons and food and friends over. Haley's Birthday was a celebration. A day to remember the amazing life of Haley and know that even after she has gone it STILL lives on!

A photo of the balloons

Kendall getting ready to be Baptised

Logan getting Baptised

OK so let me interject... Is this the most beautiful thing you have ever seen? What happened to the statistics of families TORN APART after the loss of a child? Marriages divided? This family has not only survived this loss, the KNOW they will reunite with Haley again. They have clung to one another with love, and friendship. The laughter and bond in that home, you just have to see it to believe it. Only Jesus can do that. Only Jesus.

It seems though that their exciting week didn't end there. Nick (the one who was seemingly grumbling becuase I didn't update the page fast enough) had a band competition in Chattanooga. They all decided to hop in the car and go to watch Nick's Amaxing band take first place again.

This is where I began to shed some serious tears, because well.. you will see.

As they were checking into their hotel room, the man behind the counter at the hotel said, "Ohhhh you got the 'special' room".... Cheryl began to have X rated thoughts thinking WHAT on EARTH did I book us in?? Cheryl said, Bruce gave her a winky winky and they all curiously walked to their room in the hotel.

As the door opened in the room cheryl said they immediatly thought of Aiden. (my son) And hearing this I immediatly knew it was a sign from Heaven that they are up their watching and taking care of Aiden too. As you entered the hotel room, you acutally were boarding a train. The entire room was a train car! A real train car! With the lugage racks and all! Cheryl had NO idea HOW they got this room, but as she told me about it, I just cried knowing HOW they got it.

Bruce and Cheryl (do you see the eyes peeking over the covers) in the room that is actually a train car.

Seriously people, what are the odds? They said that outside their front door of the hotel was THIS view:

I know it is selfish to just sit there and cry hearing this, but if you knew Haley and you knew how close Aiden and Haley are bonded you would understand how much that ment to ME. It was totally in Haley style, to take HER Birthday week and send a message to another sick child to cheer him up. God bless her.

OK back the Cheryl and HER family (enough about me) they spent the rest of the week at the aquarium and Band stuff. The other details I am forgetting she can share.

I will say though, as her friend sometimes I come here and want to just shout to people who just peek into this life and feel pity, "No one would envy a family that would lose a child... but the TRUE JOY and LOVE this family feels, everyone should want to know and have in their own lives"

I wanted to post one last photo from Haley's Birthday. I hope Cheryl doesn't kill me for doing it... but i just loved it.

Sitting on Haley's memorial bench. I can't imagine how it must feel to have your arms empty and only want to just touch your child one more time. Cheryl and family, I just love you so much. Thank you for letting me share this story and tell how it seems from the outside watching.

And to Nick, (who was complaining about my timing on updating...) I only have one thing for you.....

NICE OUTFIT!!! LOL

Love,
Lisa
Aiden's mom (and the one who has all the photos)

Sunday, November 23, 2008 2:07 PM CST

I know!! It has been for.....ev.....er!!!!!

I have too much to tell...I can never get around to saying it all!! Especially now that I am writing my book. All my writing time seems to go there. But, soon...a proper update, I promise.

In the meantime, I'll leave you with something Logan shared with me recently.

"Mom, I want to die like Grandpa......sleeping. Not like the other people screaming in the car."

Cheryl

Monday, October 27, 2008 0:56 AM CDT

Good morning my friends,

Yes, I suppose that 1 AM qualifies for morning.
It is 1 AM and I am sitting here thinking some incredibly profound thoughts.
I am thinking about life and death and….. thinking about God and grief ……I am thinking about family and what that word really means.

This Saturday I was at a wedding.
A wedding I would not have missed for the world.

The bride and her family are special to me and “special” really does not even begin to describe our relationship. I met Marie when she was 15 years old. Her family were members of the Church we first happened upon in our early days in Kingsport.

The Salyer family had three children close in age Matthew, Marie, and Jonathan.
They always sat in the second pew at St. Matthew United Methodist Church, and Bruce and I and our little stair step models of the Salyer family, Nick, Haley and Logan always sat a pew or two behind them.

I watched them for many years growing from young teenagers to young men and women.
I watched them follow each other up to the altar to kneel and leave their burdens with the Lord.

I watched them hug each other up there and pray for each other, I watched the love of brothers and sister for one another.

As I sat with my own little children wiping noses, and breaking up little fights and finally sending them off to children’s church, so I could worship in peace I always imagined that one day they, too, would be like the Salyers.

Linda and David were the parents of the children. And we admired and respected them every bit as much as we did their children.
There was never an event that needed workers at the church that they were not there.
There was never a dessert that needed to be cooked that Linda wasn’t willingly in the kitchen for.
There was never a piece of stage equipment that needed to be built that David wasn’t there with his hammer and nails. His hammer and nails and a lot of quiet love for everyone around him.
As I watched the children grow up I developed a very special attachment to Marie, and she reminded me so very much of my Haley. I used to think, and often said out loud, how proud I would be if Haley grew up just like Marie.

After Haley got sick, Marie would just show up at our house to whisk her away, and any other one of our kids who wanted to go, to the movies or to eat.

She always refused to take any money from us. She said she was having too much fun for us to pay her. I don’t think she ever knew how happy those little outings made Haley during a time when Haley had very little to be happy about.

When we were in Atlanta, Marie was teaching preschool and she had her preschoolers and the other teachers make a video for Haley. It was adorable… sweet, special, and absolutely perfect.

Because Haley loved the little children. She wanted to be a teacher herself. She wanted to teach small children, largely because of what Marie had shown her.

And so on Saturday I was a little bit worried that I would be able to hold myself together for the wedding, but nothing could have kept me from it. And as I knew it would, it blessed me over and over.

With apologies to all of the other weddings I’ve ever been to I have to say, that Marie was the most beautiful bride I have ever seen.

I have to say her parents were the most beautiful and glowing and proud parents I’ve ever seen.

And as I watched David walk his daughter down the aisle tears sprang to my eyes.
Tears that were complicated.
Tears that were about the sheer beauty of what I was witnessing about this father loving this daughter so very much….. so very much you could actually feel it
. And he was so proud of her.
I was so proud of her too.
I watched her and I thought it of how lucky and blessed her parents were. They had really done it. They had freely raised a daughter and done it right, Marie is still someone I would be proud for my daughter to be like, so very proud.

The wedding itself was gorgeous. Linda took a warehouse building and with a mothers loving and magical fingers she transformed it into a fairy tale wedding place.
Twinkle lights were everywhere, beautiful table covers and bows around the chairs, candles and beautiful flowing fabrics, it was absolutely perfect. And once again I thought of the love this family has for each other.

I held it all together pretty well at the wedding until the dancing started.
I watched Marie and Danny dancing with such love in their eyes, and it was so beautiful it broke my heart.
I was so happy for them and yet I was very acutely aware that my little girl, my little Haley, never even got to have her first kiss.

And as Marie danced next with her daddy to the song ‘Cinderella’ by Steven Curtis Chapman, I was again overwhelmed with such conflicting emotion. I watched the love David had for Marie. I rejoiced at this special dance between father and daughter, and yet the tears flowed to as I watched my husband watching something he would never have.

Grief is complicated. Somehow it gets all mixed up with love and joy and beauty, People we love… things we love to do, all of that gets mixed up in our grief.
One day I suppose it will all straighten out again. One day it will all make sense again.
One day I will meet Haley’s bridegroom and I will dance at her wedding.

Until that day, well done Marie. I love you.

Cheryl

Thursday, October 16, 2008 7:59 AM CDT
Hello friends,

I know. I know. It has been way too long and as always, I am so sorry for the delay.

It has just been such an emotional couple of weeks, with a bunch of physical things tossed in just to make things interesting. It seems I haven’t talked too much about all of my recent health issues, and they’re really more of a nuisance than anything.

Once my allergies were diagnosed, and I began the injections, I have been able to breathe and swallow again, and that was always my main concern. Breathing and swallowing trumps just about everything else.

But of course I’ve had lots of other symptoms for a couple of years now, some are getting worse and are definitely interfering with my ability to get around.

One of the things my oh so wise doctors decided to try and fix were some hormone abnormalities. They decided I needed monthly injections of testosterone.
Well, that did stop my heat intolerance. But, it also, basically, turned me into a man.

A man, complete with back acne, a weight gain of 17 pounds in two months, and some nice little facial hair. I was not thrilled with these side effects. And after I finished mopping the floor with my doctor, I told him there would be no more man-shots. I also told him he better hope that I could lose all this weight or that I was coming back for him.

During this delightful time, I developed shingles. I’ve never had shingles before, and they were quite painful, especially since it started on my…………

((Right here I need to insert that if you are under 13 or squeamish you may want to skip ahead several sentences.))

Nipple.

Quite painful indeed.

In the meantime, whatever strange thing has been going on with my feet has been getting worse. I can only walk 100 feet or so without us being in excruciating pain.
I had an MRI and it showed no structural problem.
So, the thinking is that there is a nerve problem. So, I am seeing a neurologist next week, and having some nerve conduction testing done. Which I hear is very painful. Nice.

Also, I found out the wisdom tooth that I spent $1000 and a root canal trying to fix is not going to make it. I am set for oral surgery that includes surgical extraction and dental implant on December 3. Yea.

Oh yeah I almost forgot. I also for the first time had an abnormal mammogram. I got the call to come in for what they call a “twist and roll” and I kid you not they really call it a twist and roll diagnostic mammogram.

To prepare for my test, I practiced stretching my breasts out and slamming the refrigerator door on them.

Anyway, I went in for the twist and roll, and they told me something still didn’t look quite right and they wanted me to have an ultrasound done right then.

I never knew the area or even which breast they were concerned with until this follow-up appointment, and when the ultrasound began and I realize that they were examining the very placs where I had had shingles two weeks ago I realized that it was going to be tissue damage from the shingles.

They came in and said nothing looks like cancer, and come back in six months .

I wasn’t really worried about any of that.

Losing a child, affords with it’s a certain degree of fearlessness. After all, nothing in life will ever be as bad as that.

In other news, the football and band competition season is in full swing and Nick is in his element. I can hardly believe this is his senior year. He got his senior pictures back last week, and they are so amazingly good. One of them in particular looks like it could be in a magazine. A very good-looking son I have. If I, (meaning if Lisa) can figure out how to post one of his pictures on this site I well.

Logan is doing great in school as always. He is getting so big, he is taller than I am now. And way stronger. He and his father lift weights together three times a week. They love it.

Let me tell you between my two boys and their dad the testosterone flows around here…. you would think I could just sit and inhale it and bring my level up to normal.

And Kendall, sweet Kendall. She is my little joy. She is still my little one. The one I can still snuggle with. The only one that is still smaller than me. She makes me smile just to watch her. I wish I could keep her young a few more years!

I really have such great kids. I am so very lucky. And as bad as the last couple weeks have been, I do know that for the first time in three years, I am starting to be able to be their real mom again.

Tomorrow is homecoming here. And both my boys will be playing at the football game, so we will be in the stands watching. Saturday is another band competition, and we also are hosting a youth event at our house that night, so it should be a crazy weekend around here.

And, a special friend is coming to visit us this weekend. A young college girl, whose life was changed by Haley’s story, is spending her fall break with us. She and I have e-mailed each other many times; she has been one of my greatest encourager’s in continuing to share my story. I am really looking forward to getting to know her a little better.

For now I will close. Thank you for coming to visit, and share our lives.

Instead of asking for your prayers for us, let me challenge you to find someone to pray for this week. Seek that person and he needs your prayers, and cover them with God’s love and grace.

In His Love,
Cheryl

Monday, October 13, 2008 11:24 AM CDT
Broken Thing

I had to walk quickly pass the water’s edge

I didn’t want to see my own reflection

But I just stepped off the highest ledge

And fell into the sea of imperfection

Just like every other time before

I washed up in pieces on the shore

You found beauty in this broken thing

Made angels dance with wounded wings

I can’t imagine anything more beautiful

You took the damaged part of me

Restored what little dignity was left inside

This broken thing

I was waiting in deep despair

Wandering with no sense of direction

Thinking prayers just vanished in the air

Because I found myself in this situation

And just like every time before

You made the pieces into so much more

You found beauty in this broken thing

Made angels dance was wounded wings

I can’t imagine anything more beautiful

You took the damaged part of me

Restored what little dignity was left inside

This broken thing

Point of Grace from “How You Live

Monday, September 29, 2008 3:37 PM CDT

“In my Father’s house are many rooms…..I am going there to prepare a place for you”(John 14:2)

UNTIL WE SEE YOU AGAIN... WE WILL MISS YOU HALEY

Monday, September 22, 2008 2:10 PM CDT
Okay. I have been told that it’s time for an update.
Be careful what you wish for.
Today has been a bad day.

And actually, if I think about it, this has been coming for a long time. My funk, I mean. I haven’t been myself for awhile now, probably because I have felt so poorly physically. At least that’s what I’ve been telling myself.

Today, I took Kendall to see a new doctor. The doctor who specializes in behavior medicine, such as ADD and anxiety problems. As most of you know, Kendall has struggled with anxiety issues for most of her life.
This poor little nine-year-old has had it rough right from the beginning. So, we are trying to get her some help, possibly some medication or just therapy.
The doctor has recommended that she see a psychologist who will do extensive testing for ADD, learning disabilities, anxiety, a depression, and even an IQ test.
The tests will take about four hours to do, but will give us a lot of information
Anyway, none of that is new news for us, and Kendall is really doing quite well.
She manages to rise above any problems because she is such a people pleaser. She just works really hard and is good at compensating and overcoming, but, if there is something that we can do to help make her life a little easier, then obviously, we want to do that.

But that is not what made today a bad day.

As we waited in the waiting room, I noticed the name of the doctor who shared the office. And while I knew he was a part of this main large group , I did not know that’s he would be where I was this morning.
This is a doctor that I met only one time. On the day that Haley died.
I hoped and prayed as I sat there with Kendall that I would not actually see him. But, because life doesn’t ever work that way, I did see him.

As Kendall and I were checking now, he was speaking to the patients in front of us, his patients. He didn’t look anything like I remember him.
It makes me realize how fragile memories really are.
How eyewitness accounts are never as reliable as we like to think.
He looks different. He looked ordinary.
Not like a monster at all.

Still, it took everything I had not to run up to him and yell, “ Do you remember me?”.

And I could imagine him shaking his head no….. no I don’t remember you.

I wanted to say, “ You should remember me. You were there the night my daughter died. You were the one on duty. You were the one who didn’t save her.”

I wanted to hurt him and wanted to make him responsible.
I wanted to blame him. I was so angry.

I wanted to tell the young parents, with their newborn, to go away to “Run! Run! that this man was not a good doctor.

But of course I didn’t say any of that I didn’t say any of that because it’s simply not true.

Yes, the doctor is guilty of some things. A few bad decisions, a LOT of insensitivity, being in the wrong place at the wrong time.
But I know, those things don’t make him a bad doctor.
Those things, don’t make him a bad person.
Those things, had they been different, would not have saved Haley’s life.

Haley would have died that day no matter who was taking care of her.

And I don’t really want to punish him.

I really don’t want him to go home and remember that night, and hold himself responsible for this little girl who died on his watch.

Because, I don’t know this man.

But I can imagine, being the wife of a doctor, how upsetting and horrific it is to feel responsible for someone getting worse or dying.

I have seen Bruce feeling so guilty for not spotting something so small. You know they say hindsight is 2020, and that is of course, completely true.

And, it didn’t help my state of mind, that we had walked into the same building where Haley had been to the doctor for the very last time.

And it didn’t help, that not only was it the same building, but only days away from being the same date.
This time of year is so very hard. I used to love the fall, and now the season is for ever marred by what it represents for me.
The end of my daughters earthly life.

I dropped Kendall off at school, and came home and just had a really, really good cry. It’s been a long time since I’ve used quite so many Kleenex.

I miss her so much.

Before Haley died, I would’ve said that if she died I would die too. But, I didn’t really get that choice. But I know that a piece of me, a really big piece of me, did die that day.

I always knew if I ever had to walk this walk, how hard it would be for me. I knew that it wouldn’t be a one year or two-year journey. I knew there wouldn’t be any “getting past it” or “putting it behind me”.
I knew it would be a forever journey.

Soon, it will be three years since I lost my girl.
Time passing only makes me miss her more.
So this is my day.

That is the snapshot of my life today.

Today I’m sad, filled with memories and grief, and wishing, wishing so hard, that it had all turned out differently.

Cheryl

Wednesday, September 10, 2008 12:16 AM CDT

I LOVE your title suggestions.....you all are WaaaaaaaYYYYYYYY creative!!

So, I had to come by and tell you that, and also another bit of news.

I can rarely remember a time in my life when I could say a piece of technology, literally, changed my life.

TiVO, of course, changed all of our lives......uhhhh....didn't it?

But now, I have stumbled across a beautiful little invention called.....

"Voice recognition software."

Oh yes, it is EXACTLY what it sounds like.

I talk....and it types. Like magic.

The only problem is that once I have it hooked up to my computer, it apparently sucks all of the thoughts out of my brain, because as soon as the headphone is in place, I become completely mute.
Can't say a word, can't string two thoughts together. I did matter to utter a nervous laugh, and the program typed out "heehee", which I thought was insanely cool.

Anyway, I AM getting used to it, I really do love it, and I think it will make my book a reality that much sooner.

The way I am writing the book is to tell the backstory behind the journal entries, and the n add an entry here and there, so it is a combination of new writing and my journal.
Thanks for all your encouragement.

Finding my voice,
Cheryl

Monday, September 1, 2008 3:23 PM CDT

A little assignment for those who still stop by here.

I am looking for a fabulous title for my book. Any suggestions??

We are all doing okay...I'll write a real update soon.

Love you all,
Cheryl

Tuesday, August 26, 2008 12:38 AM CDT

Wednesday.....

I wanted to let you all know, I have actually started writing my book! I am on page four. :)

Hello friends,

A bit of "Foundation" news first......

HUGE thank you's to all who helped, (or ate) at our Pancake Breakfast. We raised over a thousand dollars, and that is alot of Miracle Mail and grief packages....so thank you, thank you.

And, before you can even say "you're welcome", I have to invite you all to participate in our next fundraiser!!! (This is it for awhile, I promise)

Our 2nd annual Community Yard Sale will be held Sept 13th from 8-2.
Not only are we gladly accepting donations of items to sell, we need help working the event, and passing the word on.
We will not be selling clothes this year.
Please email me if you can help or would like to donate items.

Okay. Last weeks entry was a little intense, so today you get, courtesy of an email forward from my father, a little humor.

Love you all...... Cheryl
xoxoxoxoxoxoxoxoxoxo

A father was approached by his small son who told him proudly, "I know what the Bible means!" His father smiled and replied, "What do you mean, you 'know' what the Bible means?" The son replied, "I do know!" "Okay," said his father. "What does the Bible mean?" "That's easy, Daddy..." the young boy replied excitedly, " It stands for 'Basic Information Before Leaving Earth.' (This one is my favorite)

=======

There was a very gracious lady who was mailing an old family Bible to her brother in another part of the country. "Is there anything breakable in here?" asked the postal clerk. "Only the Ten Commandments." answered the lady.

========

"Somebody has said there are only two kinds of people in the world. There are those who wake up in the morning and say, "Good morning, Lord," and there are those who wake up in the morning and say, "Good Lord, it's morning."

========

A minister parked his car in a no-parking zone in a large city because he was short of time and couldn't find a space with a meter. Then he put a note under the windshield wiper that read: "I have circled the block 10 times. If I don't park here, I'll miss my appointment. Forgive us our trespasses."
When he returned, he found a citation from a police officer along with this note "I've circled this block for 10 years. If I don't give you a ticket I'll lose my job. Lead us not into temptation."

========

There is the story of a pastor who got up one Sunday and announced to his congregation: "I have good news and bad news. The good news is, we have enough money to pay for our new building program. The bad news is, it's still out there in your pockets."

========

While driving in Pennsylvania , a family caught up to an Amish carriage. The owner of the carriage obviously had a sense of humor, because attached to the back of the carriage was a hand printed sign... "Energy efficient vehicle: Runs on oats and grass. Caution: Do not step in exhaust."

========

A Sunday School teacher began her lesson with a question, "Boys and girls, what do we know about God?" A hand shot up in the air. "He is an artist!" said the kindergarten boy. "Really? How do you know?" the teacher asked.
"You know - Our Father, who does art in Heaven... "

========

A minister waited in line to have his car filled with gas just before a long holiday weekend. The attendant worked quickly, but there were many cars ahead of him. Finally, the attendant motioned him toward a vacant pump. "Reverend," said the young man, "I'm so sorry about the delay. It seems as if everyone waits until the last minute to get ready for a long trip." The minister chuckled, "I know what you mean. It's the same in my business."

========

People want the front of the bus, the back of the church, and the center of attention.

========

Sunday after church, a Mom asked her very young daughter what the lesson was about. The daughter answered, "Don't be scared, you'll get your quilt." Needless to say, the Mom was perplexed. Later in the day, the pastor stopped by for tea and the Mom asked him what that morning's Sunday school lesson was about. He said "Be not afraid, thy comforter is coming."

========

The minister was preoccupied with thoughts of how he was going to ask the congregation to come up with more money than they were expecting for repairs to the church building. Therefore, he was annoyed to find that the regular organist was sick and a substitute had been brought in at the last minute. The substitute wanted to know what to play.
"Here's a copy of the service," he said impatiently. "But, you'll have to think of something to play after I make the announcement about the finances."
During the service, the minister paused and said, "Brothers and Sisters, we are in great difficulty; the roof repairs cost twice as much as we expected and we need $4,000 more. Any of you who can pledge $100 or more, please stand up."
At that moment, the substitute organist played "The Star Spangled Banner." And that is how the substitute became the regular organist!
________

Give me a sense of humor, Lord, give me the grace to see a joke, to get some humor out of life, and pass it on to other folks.

Tuesday, August 19, 2008 12:13 AM CDT

In fairytales, and in the way we all expect life to be, we are born, we live a good, long life, and we die peacefully in our sleep.

Life is no fairytale. Life is hard…..and death can be very hard too.

I have seen really good people turn away from God because a loved one, especially a child, died a less than peaceful death. They think, understandably so, wasn’t the suffering of illness enough? Why wouldn’t God just take our loved ones peacefully….with angels, and no pain?

This has been on my mind a lot lately. I am not sure why, although I think God places subjects on my heart that will help someone else. I am sure many of you reading this will find this uncomfortable….but, I am just as sure that ONE of you reading this….somehow, needs to be reading it.

We are born, not peacefully, but with much pain and labor. Birth is long, hard and …messy. And then we are blessed with a new life.

I think death is often much the same….a long labor….and then a new, and much more perfect, life.

Sometimes, I wonder how I will die. Selfishly, I hope for a quick and painless end.
But, however it comes, I hope I can be as brave as my little girl was.

And I hope I can keep the finish line in sight.
The birth, not the death. The beginning, not the end.

Jesus’ death on the cross was long and grisly…and even HE cried out “Why? Why have You forsaken me?”

So, for US to understand, is a pretty big task. Sometimes it has to be okay to NOT understand.
To just trust. And to believe.

Believing,
Cheryl

PS… Please send out prayers for Aiden (fl/aiden) and his family. We love you guys!!!!

Friday, August 8, 2008 1:13 AM CDT

I betcha thought I was never coming back, huh????

I won’t ever be quite that rude…when I decide to end my journaling; I will let you know in advance, so that the few of you still checking in will not be checking in vain. ☺

It’s 1AM, and I can’t sleep, so it is another “Random Thoughts” entry.

Random Thought 1
Asthma and allergies

Why is it that people with asthma and allergies are portrayed in the media as being very smart, yet socially retarded. They are non-athletes, love Math, and suck on their inhalers wherever they go. They are, invariably, allergic to peanuts and animals. Theses being, for some reason that escapes me, the “funniest” things to be allergic to. It seems to be especially funny when one has an accidental exposure and their face swells horribly, threatening to block the airway. Can someone tell me what is so funny about that?
Would people dying from strokes, heart attacks, or cancer be that funny to people?
Now granted, they usually don’t actually let them die….they bring them to the brink, to the ER, where they get their life saving epi pen. But, in real life hundreds of people, mostly young, die from allergic reactions, especially peanut allergies. Maybe it is just me, but the humor in that situation escapes me.

Random Thought 2

Having Faith in God is not the same as trusting God. You can have faith that He exists, but still not trust Him to know what is best for you, and your family. Faith is fundamental. Without it, Christianity does not exist. But trust is relational. It is a choice you make in your relationship with God, and it is a pretty cut and dried issue. You either trust Him in all things, or you trust Him in nothing.
Think about it. How much do you trust God? How much do you trust Him with the things you treasure the most?
There is only one answer. If you don’t trust completely, you need to spend some serious time in study and conversation with Him. He wants to help you trust Him.
This is not an easy thing to do, but neither is most anything worth having.

Random Thought 3

Does anyone watch the Olympics anymore? Remember when it was a huge deal? Before big cable? I still remember watching Nadia Comaneci spring her way into several perfect 10;s and steal everyone’s hearts. I was 11 years old, and wanted to be just like her.

Random Thought 4
The Haley Vincent Foundation
I am planning to update that site tomorrow, but wanted to write a small personal plea here.
Pancake Breakfast at Texas Roadhouse on Sat August 19th. Tickets are $5.00, pre paid OR at the door. For tickets bandcvincent@aol.com
AND
The annual fundraising Yard Sale will be held Sat, Sept 13 8am to 3pm
We are accepting donations of gently used items. No clothes please. We also need workers for the yard sale.
Please, if you live here locally, think about helping out this year. These are our only two fundraisers left (Our golf tournament had to be cancelled due to a change in volunteer leadership) and we need to raise money to finish out the year. All of the money raised goes directly to our programs, and we ARE a non-profit organization.
ALSO, on that note, we have beautiful 2009 calendars for sale ($7.00), each page has a bible verse with a beautiful photo of nature, we also have CD’s ($10.00), we have a few other items that we will bring to the fundraisers…Christmas is coming…. all of these make great little gifts!

Random Thought 5

I am thinking, seriously, about writing a book. Here is my dilemma. I feel so strongly that I have a book inside of me, but am not an author. I think lots of writers feel they are authors with no story to tell. My problem is the opposite. So, I am working it out, with the help of my biggest cheerleader, Lisa, and now that the kids are back at school….who knows? I can always self publish it.

Random Thoughts 6

I have been eating “organic” for several weeks now, and forcing my family to do so as well. Last Friday night Bruce and Nick came home with some fast food from Pal’s after a band meeting. I was already in bed, but I hear the conversation went something like this.

Logan: ‘Whose food is that?”

Bruce: (Knowing he is soooo busted) “The hamburger is mine, the fries are Nick’s. Sorry Logan, we didn’t think you would still be up.”

Logan: (a tad sarcastically) “That’s ok. You go get my favorite fast food, and I have been stuck in this house all day, eating organic turds.”

Uhhhh, Logan…those were potatoes, not turds…I promise!

Random Thought 7

What would I do without my friends here? I can come here at 2 in the morning, and journal all night, and I know someone out there will be happy for me! That is a great feeling. Thank you, my friends.
Now that school is back in session, I will try to be better about getting here. I know I have some fun stories to share, my brain is just too tired to dredge them up…so, next time, I promise.

Before you shut your eyes on this day, say a prayer, thank God for all the blessings in your life. Thank Him for your hardships too. There is wisdom and beauty in suffering.

Love you guys,
Cheryl

Friday, July 18, 2008 11:23 AM CDT

Hello my patient friends,

Thank you for all your kind words and prayers.

As far as my health issues, I can tell you what I know....which isn't much :)

I have some un-named autoimmune process developing.

It responds to steroids. The goal is to find the smallest dose that controls my symptoms.

I have allergy skin testing scheduled for next week.

I have developed asthma and am using an inhaler twice a day.

I have an autoimmune thyroid condition, and am taking thyroid replacement now.

I had a sleep study done last week...and naturally they want to repeat it again this Sunday. (I still have glue in my hair from last time)

So, enough about me.

Nick, my 17 year old son, has a new girlfriend. She is really sweet, and they have been dating almost a month....a new record for my son, the player.
Hopefully, he won't mess this one up :)

Logan, 13, is ALL boy and ALL teenager. Sleeps till noon....texts all day.

Kendall, 9, is all tomboy, and growing like a weed. She starts 4th grade soon.

We had fun with the Hawk family. Quite a different vacation for them, I am sure. But, I am so glad they were here when I needed them, and it was so great to spend time with all of them.

Thanks for checking in. Love you guys,
Cheryl

Friday, July 4, 2008 6:08 PM CDT
Saturday update:

Hey it's Lisa.. Cheryl is in bed, I am watching Nascar with Joey and Bruce. I just wanted to let ya'll know that Cheryl is feeling better today after 125mgs of solumedrol (steriods) and after some time in the ER last night. They did a CT on her lungs and extensive labs. I don't know when the answers will come for Cheryl, but honestly... Can't it just be enough that they watched their daughter suffer for years and then die? Now she has to deal with this.

Some poeple don't get it.. but most will.. when we say the last place we want to be is in a hospital. We mean it. I just pray for nothing but blue skies, sweet moments and joy for this family. They derserve only that.

Cheryl will update soon. I was happy to see her not be short of breath by just speaking today, that was a relief.

Hugs to you.. cheryl was so thankful for the notes in the guestbook.

~~~~~~~~~~~~~~~~~~~~~~

Cheryl's friend Lisa here. (Aiden's mom) I am visiting with the family and I get to update for her. (yes you are now used to me and my rambling, but you also know when I update ususally it is because Cheryl can't)

Cheryl is currently off to the hospital to get some MORE labs run. You know I had been harping on her to update her site, she had this hilarious story that she wanted to tell but she just has been too sick to do the whole thing. SO as she was leaving for her trip to the hospital, she said, "see THIS is something you can put on the site."

Of course we put it here for prayers. All of you who have prayed for Haley for the years she fought her amazing fight, and then the years after she passed you all have prayed for Cheryl and their family. Who else understands the need for prayer like you all?

Do you remember Cheryl's recent drama of the anaphylaxis/ allergic reaction she had to shrimp in Atlanta? Well, it just seems to have been the tip of he iceburg for Cheryl. SO little of the back story has been shared, but I thought it was time now.

Backing up in the story, for years, before haley ever died, Cheryl was suffering with incrediable joint pain, a rhuematoid factor off the charts, and some autoimmune disease. I remember Cheryl calling and talking about Haley and her pain and fevers, and of course the whole time Cheryl too had pain and fevers. But as a mother.. that wasn't the priority.

From pain, fevers, joint swelling, and of course the unbearable feet pain, it seemed so much like Haley. When she called me from Atlanta telling me she just ate some shrimp and she couldn't breathe, I then felt like I was living all the traumas Aiden has been through. Of course Haley and Aiden are so much alike it gives me chills sometimes.

Cheryl was placed on massive steriods from her allergic reaction, and suddenly all her pain was gone. She had so much energy I could hear it over the phone! But everyone here noticed it the most. Up and down the stairs, shopping, eating, excercising, she was like a new person. The pain was gone. At that point everyone knew it was time to find some answers.

Anyway, I am not trying to be dramatic.. just wanting to ask for some prayers. I can actually HEAR, the wheezing in cheryl as she sat on the couch next to me. I just know she is exhausted and trust me... if you have lived the hell this woman has lived in hospitals.. the LAST place she wants to be is there.

Even if she doesn't update, I will later when we know more. God bless!

Love, Lisa
(Aiden's mom)

Saturday, June 14, 2008 2:54 PM CDT

“Someone once told me that when you give birth to a daughter, you’ve just met the person whose hand you will be holding the day you die.
In the days after Elizabeth was born, I would watch those miniscule fingers, the nail beds like tiny shells, the surprisingly firm grip she had on my index finger, and wonder if, years from now, I’d be the one holding on so tight.”

Jodi Piccoult ‘Change of Heart’

Isn’t it funny how we go from our children gripping us….to us gripping them. And sometimes, no matter how hard we hold on, they leave us anyway.

Sunday, June 1, 2008 5:23 PM CDT

Home again!!

Thank you, Lisa, for posting the beach pictures. You picked two of my favorites! I know keeping up with these pictures is a labor of love for you, but I don’t say “thank you” near enough….so, thank you, my friend!

We had a really nice time at the beach. Four adults, FIVE boys, and one sweet little tomboy…..and the testosterone was flowing!!

Boys, and men, are very different creatures. And they are definitely born that way. You can’t LEARN some of this craziness.

For instance, just because you CAN urinate in oh so many different places….doesn’t mean you SHOULD.

And, what is the deal about GETTING THERE!!!
What happened to, at least some of the fun being in the journey?

Not my boys.

They begin scheming hours before we leave (for anywhere) about how to shave off minutes here and there from the travel time.

And, when we actually start…..they go into this crazy, glassy-eyed ‘Hurry up and get there” altered state.

They would rather urinate into empty bottles than stop.

They would rather NOT drink anything for the whole eight hour drive than stop.

We traveled in two cars, and I had with me, Kendall and Logan. We stopped three times, less than 10 minutes each time.
The older boys (and Logan) nearly had a stroke. Logan actually refused to get out of the car (even though we were stopping anyway) thinking if he stayed in his seat, he could somehow, magically, make up some time.

And, somehow, the craziness is contagious, because I find myself not even THINKING about eating in a place where you cannot drive thru.

One of these days you’ll be reading about how one of us got a blood clot from staying in a cramped car for hours on end…..and you’ll say, “Cheryl SAID that was gonna happen.”

By they way, in case you are wondering, I nixed the urinating in the bottle idea.

You gotta draw a line somewhere. ☺

Can I share with you a few lines you never want to hear when traveling with 6 children?

“ I bet you can’t do this.”

“ Is this thing lit?”

“Did somebody throw up?”

“Where are the matches?’

“I’ve never seen anyone do that before.”

Love you guys!!

Cheryl

Sunday, May 25, 2008 9:36 PM CDT
Here we are again, our annual beach vacation.

Holden Beach.

If you have been following our story for very long, you know how special this place has become to us.
It’s as if God picks our weeks here to remind us of His love, His plan, His grace, and His mercy.

All of our past trips here, I was throeing myself at His feet…”Make me feel better!!....Show me something….Anything!”
And He did.
As if THIS were the place where He revealed Himself most.

But, this year was a bit a different. I came with no requests, or expectations.

After all, what could really top “Haley’s Ice Cream Shoppe.”

Well……I am glad you asked. :)

This may not top it, but it equals it.

First….a bit of background.

When Haley first became ill, and we took that horrible trip to Duke in Jan of 2001, we stayed in Room 515.
Every time I saw that room number, arriving to or leaving the room, it reminded me of the Bible Verse, James 5:15…..”And the prayer offered in faith will save the person who is sick. The Lord will raise him up, and if he has committed any sins, he will be forgiven.”

In fact, we became so attached to that Bible verse, that we had it printed on the back of our “Haley’s Helping Hearts” T-shirts.

And some time later, I bought a print of a man kneeling by the bed of his son, praying, with the words of the next line of scripture, James 5;16, “Therefore, make it your habit to confess your sins to one another and to pray for one another, so that you may be healed. The prayer of a righteous person is powerful and effective.”

That picture hangs in our entrance hall.

So, I have to say I was completely speechless, when our friend’s six year old founda shell on the beach our first day here.
Inside the shell, someone had written the words, “Pray for one another….James 5:16”

I just marvel at how big God is….and yet how He remains in the details.

And for those of you who think Haley WASN’T healed, or our prayers WEREN’T answered…….well, that’s not always as simple as it seems. I know that Haley was always in the center of God’s will. I also know that being there wasn’t an easy place to be.

God’s will is not the same as our will.

We would never suffer a moment if we were the ones who got to decide. We are wimps. We don’t like pain. We want life to be easy and simple.
Believe me, I wanted my life to be easy and simple.
Instead, it has been hard and complicated.

God reminded me today to be praying. That, no matter the outcome, prayer is essential. He calls us to pray for one another.

Praying,
Cheryl

Tuesday, May 13, 2008 3:13 PM CDT

A Random Thought day…..

1. The Haley Vincent Foundation
Our work sort of ebbs and flows with The Foundation…depending on my energy levels ☺
But, I do want to encourage you guys to visit the web site often….I am trying to keep it changed and updated.

And, I want to send a special thanks to Erin’s family for sharing their personal experience with The Foundation. It is our honor to be able to spread a small amount of love and comfort during such hard times.

2. The Internet

Some days I think the internet was invented by Satan himself. When I look at the ease with which we have sin at our fingertips. When I see how cruel people can be, especially when they can hide behind the anonymity of a computer screen name.

And then I see it as an instrument of God, as I see prayer requests passed on and multiplying, when I see the support and companionship it can bring to those who would otherwise never meet. And I see family and friends staying connected in a way I don’t think they would without the ease of email.

I suppose, like all things, the internet works for good for those who know and serve the Lord.
It is about the people behind the keyboards. It is about our choices. The internet is a tool that can be used for good or for evil. I suppose, like many, many things, the choice in how we use this gift belongs to us.

3. Breathing

We don’t appreciate breathing until we can’t do it. An ill-fated piece of Shrimp helped me realize that in an all too real way.
I also realized (again) how much our (and you know who you are) children have suffered with their illnesses.
My heart breaks when I think of how fragile, and yet so incredibly strong, they are.

A young woman whose story I have been following is fighting for every breath she takes, and is so exhausted. Sick and tired of being sick and tired. It seems she has fought off cancer, just to be riddled with GVHD in her lungs. My heart breaks for her.

4. Haley’s Friends
I am still hearing occasionally from Haley’s school friends, and I really love that. I know they come here to visit and remember. And I love them for that. And OF COURSE I remember you guys! I remember each and every one of you who stood by Haley, who tried so hard to always “save a place” for her, how you never treated her like the sick girl. You all are so dear to me.

5. The Mathlete

I defer to my husband in all things mathematical. He was on the math team in high school. Has a degree in Chemistry…and went on to med school. He can look at Nick’s Geometry book and make sense of it. To me it looks like Arabic or something. I really can’t even remember taking Math in school….like I blocked it out or something.
We recently decided to buy a “runner” for our stairs. Just a simple carpet runner.
Being the practical people we are, we decided just to but one from home depot, so Bruce measured the stairs and off we went.
I, because I have some concentration issues, wandered over to look at curtain rods, when Bruce came to find me.

Him: “You can’t believe how expensive this rug is.”

Me: “ Stop bothering me, I’m looking at these riveting curtain rods. You KNOW Home Depot is my favorite place to shop.”

Him: “Seriously….it’s $5200.00.”

Me: “ WHAAATTTTT??? Is it made out of Cocaine!!!! Do they know we are at Home Depot, not some fancy “we-stitch-this-crazy-expensive-rug-by-hand-at-our-sweat-shop-and-then-outrageously-overcharge-for-it??”

Him: “ I KNOW!! I called the guy over, and he said “Yep. That’s how much it is.”

Me: “ Has anyone actually BOUGHT one of these?”

Him: “ I asked him that too!. He said “No.”

So, we weren’t gonna be the first morons to buy a five thousand dollar carpet runner. We left that store with our wallets and our dignity intact.

And then Bruce’s dignity hit a little speed bump.

He measured wrong.

The carpet he was trying to order would have been 10 stories high.

Which is pretty funny, all by itself….but factor in the home depot guy who would have SOLD us a ten story high carpet, and it makes me laugh out loud.

6. Whack Jobs

I hope this doesn’t get us killed in our sleep, But speaking of Bruce, he has got a few seriously crazy patients.

Crazy as in” we have had to get the police involved” crazy.

I just mention this because we have had to get our phone number changed and unlisted.
It always felt a little pretentious to me, to have an unlisted number, but I am tired of people crossing the line, invading our privacy, making me feel unsafe in my own home.

And if you ARE one of these whack jobs….remember we have an alarm system, two dogs who WILL bite you, and a policeman who lives three doors down who KNOWS about you.

Until next time….

Cheryl

Saturday, April 26, 2008 8:05 PM CDT

Hello friends,

As always, thank you for continuing to visit here…your love, support, guestbook entries, and emails keep me sane!!!
Sometimes I put off updating this site because I feel like I have to have this big entry planned and written. And the task seems too big.
But. I realized tonight how crazy that is. Just stopping in to sy “hi” is enough sometimes.

This week has been really crazy for us….

Nick went to the Junior prom. He, and his date were gorgeous (I need to say, they are JUST FRIENDS). Nick does not have a girl friend, and his track record with women is not good. His longest relationship, if you can call it that, lasted three weeks. We think he will need to transfer high schools soon, as he has dated every single girl in the sophmore and junior classes. (Maybe a tiny exaggeration…but still……)

He is adorable in his tuxedo. ☺

Kendall has been sick for a week. I am sure she is fine…she has a cold. But, I can never again think like a “normal” mom. I worry about her….I break out into a cold sweat sometimes just thinking…”Could I have to go through this again?” “Could one of my kids get sick again?” “Could I outlive another one of my children?” “Could lightning strike twice”
Unfortunately, the answer to all of those questions is “Yes”. It could happen again.
I no longer live with the illusion that bad things can’t happen to me.

I worry more……but I also worry less.

Because, I have also lost the illusion that I have any control over the ultimate outcome of life.

Haley was meant to take her first breath on Nov. 5th, 1993 and she was meant to take her last breath on Oct. 1, 2005. Our number of days on this earth is known by God. And only by God.

We cannot change that.
We cannot change our number of days.

What we can change, and impact are what we do with those days.
I certainly have some regrets about what I did with some of Haley’s days.

I wish I had worried less, and danced more.

I wish I had pitched a tent in the moonlight, and talked girl stuff all night with her.

I wish I had done her makeup and hair and gone to a really fancy place for lunch.

I wish I had pretended to be a TV reporter and interviewed her with our video camera.

I wish I had taken more pictures.

I wish I had never slept. Just watched her sleep.

I wish I had her book bound and given it to her as a present.

I wish I had given her a surprise party.

So, do me a favor. Stop what you are doing. And, go dance with your kids.
I’ll be dancing with mine tonight…..and praying that Haley is dancing along…in my heart and in Heaven.

Hugs!!
Cheryl

Tuesday, April 15, 2008 7:16 AM CDT

FRIDAY UPDATE from Cheryl

Hi all,

Just a quick note to say thank you for all your concern!
I definitely had an eventful trip, Bruce has told me that I have lost my traveling alone priveleges for awhile.

I am still very weak and sick. I am still taking steroids and antihistamines. Still haven't been able to eat much......BUT, I am slowly feeling better.

I'll try and write here again soon.

In the meantime.....

Tomorrow (Sat. April 19th) is the HVF Pancake breakfast at Applebee's.
I haven't been able to send out the reminder emails this week...so if you are reading this, we would love to see you all tomorrow.
HVF is a non-profit Foundation, and 100f the money raised will go directly to programs we have created for children and families impacted by chronic illness.

Love you guys!!
Thanks again for all the prayers and love,

Cheryl
WEDNESDAY UPDATE

Cheryl is home finally! She is still very sick though having prolonged reaction to the shrimp. She then had some type of crazy reaction to the steriods which caused her Blood pressure to hit 160/110 and have an extreemly high heartrate. She has on and off moments where her throat tightens, but her breathing remains ok. She is thankful for the prayers but she still sounded pretty yucky today. Keep praying, hopefully soon she will be feeling back to normal.

hugs, lisa

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

UPDATE

Cheryl just called in tears... she was driving home and she began to lose consciousness. She was taken by ambulance to a hospital in South Carolina. They are ruling out cardiac stuff. She has abormal labs, and her EKG was not normal. As an allergy mom, I can tell you she did NOT get the proper care in Atlanta, and I am just horrified this poor woman has gone through so much. Bruce is moments away to meet her in South Carolina. The kids are scared, and that has Cheryl feeling so guilty. PLEASE PRAY for Cheryl. Let her know you are thinking of her. This is so terrifying.

We love you Cheryl

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

This is Lisa (Aiden's mom)... wait don't go.. I heard the collective groan when you all read it wasn't cheryl, but I am hijacking her site for a good cause.

So as you all know (I think) Cheryl went to Atlanta to do a National Television show! She was on the TV talking about Haley, organ donation (and the lack there of), as well as the foundation! Well, if you all know Cheryl, when ever this woman does anything like this she is under serious attack from Satan. Last visit her cell phone totally died.. while on the phone with me, thank you very much! And she had to drive through the desolate mountians only to stop at Bubba's BBQ and beer... (see journal history). Often if I am with her and she is doing foundation work, her car breaks down, we lose it even after searching for 20 minutes in a parking garage beeping the alarming, running from level to level. Basically it is always a mess. But the GOOD word, of God's love and the AMAZING story of a little girl who smiled through suffering, always touches someone.

So that is a big set up for what happened yesterday. I get a phone call from Cheryl yesterday afternoon. She says to me, "Well this beats all." I wasn't prepared for what followed. It seems after a lovely lunch with one of Cheryl's friends, specifically shrimp, Cheryl was feeling like she had something caught in her throat. She knew right away that she was having an allergic reaction to shellfish. Does Cheryl HAVE food allergies? No.. well not until now!

She then immediatly can feel her throat is swelling, and calls Bruce. He recommends she goes to the drug store and get some benedryl in her system ASAP. By the time she got there she couldnt even get the pill down, she had to make it a poweder. She rushes her SELF (gasp) to EMORY Hospital ER. Once she walks in she says those magic words ,

"Umm I am having a reaction to shell fish" and everyone begins to rush around and take care of her. After some steriods, solumedrol, benedryl etc.. she is sent on her way.

She then goes back to the hotel ALONE and calls me. On the phone I heard her cough twice and her nose sounded congested. Only the mom of a child who has life threatening allergies would notice this. But I demand she take more benedryl and I tell her that I would be calling her every four hours so she would take it around the clock.

At one point during our call I was singing to her INXS's "Our worlds collided"... I felt like I was in a bad dream listening to this woman who I love like a sister tell me about something we talk about all the time regarding MY child.

Well I hang up, shaken but she claims she is ok. One hour later, my cell rings and it is Bruce calling from Nick's phone. Cheryl had to call 911 because she was getting worse again.

Ummmmmmmmm is anyone ELSE reading this in shock shaking their head?

After being evaluated time number TWO they collectivly decide it is best for her to stay with someone. She stays with Lauren. Now I don't know what transpired, because I was in Florida... so I decide to text message her joking that she needed to stop scaring me... and then to my shock I get another text back saying yet again.. she was BACK in the hospital!

From our late night texting (to which I am a total ametuer) I gathered this much

1) she was worse again
2) she was in her Pajamas
3) They gave her more steriods
4) and she called me twisted.. so her sense of humor was still intact.

So after this she goes to Lauren's home, exhausted, sick feeling, and off to Bed. I just can't believe what she went through. Just can't believe it.

I just sat on my couch and imagined how much torture it was for her. She made a huge effort to avoid the hospital since it is such a difficult place to be. But instead, she not only doesn't avoid the hospital she gets sick herself. I can't imagine the fear and sadness she felt as she sat in an ER, getting the very same medication Haley used to get. This is a woman with severe autoimmune issues (don't let her fool you, Cheryl has an Rhematoid factor 22x normal) and recently told me she would never take prednisone. And now they are pumping her up with it. My heart broke just thinking how tragic it is to go through something so scary already, but then on top of it have so many more terrifying memories to add to it.

I don't know what she said on the TV show. But I am certian that it was amazing. I am certian that Cheryl shined a light for Christ. PLEASE pray for our friend. We need to cover her in prayer as she makes her way to her home today.

``````````

As I was proof reading the above (since I am terrible at spelling) I noticed this sentence:

"the AMAZING story of a little girl who smiled through suffering,"

It just struck me... isn't that our Cheryl? Haley was so special, and so wise beyond her years. But what type of suffering is greater than the loss of a child? I can think of none. And yet, just like Haley, Cheryl has kept that smile, and kept us smiling with her. This is an amazing family. I am blessed to be called their friend ( stalker).

prayerfully,
Lisa
www.caringbridge.org/fl/aiden

Saturday, April 5, 2008 2:50 PM CDT

Here I am!!

I have been working hard with The Haley Vincent Foundation.

We (mostly the amazing Bonnie) have been trying to create a more user friendly site that I can journal on. It needs to be ever-changing so we get repeat visitors.
I will slowly start transitioning over to the Foundation page completely.

For now, I plan to keep journaling both places. Although the Foundation will focus on our work, I will add personal updates and stories to each entry.

So, you will have to go over there to read for yourselves. A hint…this week are a few of my favorite “Haley stories”.

The way you all can help me is to email me any “Haley stories” of your own. Happy, funny, serious, spiritual…whatever…..family and friends, and those who only know her through the web site, I want to publish those stories, a couple at a time, each time I update our site.

I also have the ability to add page links for prayer requests, or even just emotional support. If you would like your caringbridge site, or personal web site linked to the Foundation, email me the link.

If you are running , or affiliated with a non-profit, and want your link included, we are creating a page just for those types of links. Email me if you want to be included.

One last thing…if you have ever received a miracle mail or grief package and want to write a short testimony, we have a page for that as well. Once again…..email me.

Oh yeah, just one more thing, if you would like your child to receive a miracle mail package or know someone who needs one (or a grief package)…..uh, email me!

My email address is at the bottom of this page.

Ok, I promise this is really the last thing….. I have a ton of stuff going on with the Foundation right now….so, go on over to the site to read.

Okay.

On to the juicy stuff.

I think it is time to update on my family.

Bruce, bless his heart (you all know what THAT means, right?) is turning into an exercise fanatic. He gets up at 5 am, and works out until about 7:30. He walks the dogs, then he runs, then he rides his bike, then he lifts weight.
After work, he throws the football or plays basket ball with the kids until dark.

I don’t really mind (he’s lookin pretty hot), BUT he wants ME to jump on the exercise wagon with him. I hate to exercise. And I definitely don’t want to exercise with an exercise psycho.

Kendall is turning into a bit of a sassy pants. Part of the problem is Bruce lets her get away with anything.

Last night.

Me: “Kendall, go get ready for bed.”

Kendall: “No.”

Me: (with that cold mommy stare and stern voice,) “Kendall! That is rude! It is NOT okay to talk to me like that. .”

Kendall: “Okay. No, thank you.”

Well, she was more polite, but she sassed herself into a 15 min earlier bedtime.

Before that, I had let her get away with this next one.

We were playing Cadoo. And I am not that great at the charades part….umm or the drawing part….ummm or the sculpting with clay part…BUT I ROCK the multiple choice part!!

So, I am trying to act out the word “skiing”.

I did my best, and huge surprise, no one guessed it.

Kendall: (incredulously) “THAT was skiing.”

Me: (defensively) “ Well, yeah…how would you have done skiing?”

Kendall: “Uh, better than that.”

Oh well, I guess I should just be glad she wasn’t one of those 3rd graders on the news this week plotting to kill their teacher.

Did you hear about that??

Those children had a plan (and as my best friend, who happens to be a 3rd grade teacher says, “Who says chickens can’t organize.”) (Remember the movie “Chicken Run?)…they had a paperweight to bust her head, handcuffs to keep her still, and steak knives to finish her off. Holy cow!

Those kids are 3rd grade psychopaths. And if you are one of their parents reading this, I am sorry if that offends you…but….your kid is a psycho!

But, I am digressing from my own perfectly behaved children. (Gag)

Next up….Nick, who is in full fledged “teenager-dom”

He will often listen to what we say, very attentively, and then turn around and do exactly what he wants to do.
I will say one thing for him…there is never a dull moment.
And, he is a blast to be around….one-on-one. I love to hang out with him. He’s funny and smart, and completely charming (when he wants to be).

Logan is doing great. He will be getting straight A’s (again!) this semester, and has been identified for the “Duke University talent identification program” as a “academically gifted” child. You may remember he was invited to take the ACT as a seventh grader this year.
We received a letter from Duke, inviting him to be a part of a 3 week summer academy program at the University. Staying in the dorms…doing classes at the college…how cool is that!!
The letter we received said, in part,

“The score your child received was a remarkable achievment. Only the top 5f the academically gifted students in the 7th grade are even invited to participate in the talent search, making this a very distinguished pool. Of the approx 70,000 academically gifted 7th graders who took the ACT, your child scored exceptionally well.”

Unfortunately, we can’t do it this year. But, I am going to find out how to keep him “on the radar” and definitely send him next year.

As for me, I am ok. I did finally get some aswers on my physical health. Symptoms I have been having for 2 years now. It is definitely “something”. I am NOT crazy. She (the orthopedic surgeon) actually said that!
I have chronic inflammation of my joints and some deterioration of my ….are you ready for it…….metatarsal fat pads. That means the bottom of your feet.
Apparently, I frequently USE my feet, and this has become a bit of a problem.

So, the answer is “something autoimmune, connective tissue and collagen problem.”
The treatment. None. I am going to get some special shoes (she promised me they would just look like a normal tennis shoes) that will take some of the pressure of that metatarsal fat pad area.

She said, “I see this in lupus a lot…do you have any autoimmune disease in your family?”

I was speechless for a second then blurted out, “My 11 year old daughter died from lupus.”
To her credit, she did not fall off her stool.

Well, I still need to update our Foundation web site.

I’ll see you over there.

Cheryl

Thursday, March 27, 2008 8:15 PM CDT

Today is Kendall’s ninth birthday. My youngest child, getting so big!

As I was cleaning our “bonus room” for her party, I was thinking about Haley, and trying to imagine what our house would look like if she was still here.

She never had a bedroom here. It is hard to imagine.

But, I know there would be frilly girl stuff everywhere. Probably even a doll or two, even though she would be 14 now.

I was thinking today about some of the funny things she would say, and how much I miss that. I miss everything.

It’s funny, I don’t know anyone who has a stronger faith than mine, but I didn’t take Haley’s death well. I had a hard time seeing the bright side of this. I didn’t care that she was in Heaven, I wanted her HERE.

I didn’t want her memorial service to be a “celebration” of her life. I wanted a funeral. I wanted people to wear black and be sad. I wanted everyone around me to be as devastated as I was…..to really appreciate what we had all lost.

But the thing is, that no one else loved Haley like I did.
I mean, I know people loved her. But, no one loved her like I did.
I was her mom.
And no one else was her mom.

And sometimes I feel like the whole world has moved on, and I am mourning her by myself.

It is that awkward time, it’s been long enough that people don’t expect me to be openly crying. But for me, I am always crying…even when the tears don’t show.

And, I don’t say these things out loud anymore.

As Haley would say, I “suck it up”, and get on with living.

I smile and I laugh and I give birthday parties. I like to call it “defiant joy”. Finding the joy even when life has sucker-punched you. Sometimes I have to work very hard to find that joy. But, I find it, and when I do, I like to mentally stick my tongue out at the evil one, and say “ppffffttttttt”
I WILL have the last laugh.

Defiantly joyful,
Cheryl

Wednesday, March 19, 2008 9:43 PM CDT

First I have to say a huge thank you to all who signed my guestbook, but especially to those girls who were both Erin and Haley’s friends. To know you still think about and remember her is a gift that no one else can give to me. Thank you so very much. Please continue to check in, I love to hear from you. And Erin’s mom will need you all so very much.

Well, I promised you a story or two about my Atlanta trip. You will be happy to know that my gift of making a simple 6 hour drive, into a stressful 10 hour drive remains intact.

In Atlanta, I stayed with Mina, and I have to say it was the first time since Haley’s death that I have felt “good” when I started back home. I’m not gonna lie, there were some tears on my ride home as I contemplated all that had happened in my short visit, and I wanted so badly to talk to HER about all of this. I want to know what she wants…..I want to know her opinion….I just want to hear her voice.

About halfway home, in Greeneville, SC, my cell phone collapsed and died. It happened so fast, in the middle of talking to Lisa….just pfffttt…gone.

Now I knew I had to call my husband because he would be seriously freaking out if he couldn’t get a hold of me for the next three hours, knowing I was in the mountains at night.

So, I decided to find a pay phone. I wasn’t so sure they even made pay phones anymore, so I decided to stop at the very first one I saw.

So, I did. I haven’t used a pay phone since it cost a quarter, and you could never have used a credit card. I had some trouble figuring out the instructions, but being the college educated woman that I am, I was able to work it out.

Confident that I would soon be speaking to Bruce, I began to survey my surroundings. By the time he answered the phone with a hello, I whispered out, “I need to hurry, I may be getting mugged soon.”

Right next store was “Teddy’s Tattoo’s”, and rounding out the pleasant little shopping area was a pick up truck, with a pop up tent, and a sign bragging “The Best Hot Wings in Atlanta.”

I wondered if they knew we were 150 miles away from Atlanta or that they were selling food from ………a pick up truck. Who does that?

“Hey Mary, run down to Hwy 25 and grab us a few wings from the back of that truck”

I was a little nervous being there, as I was drawing attention to myself, mostly by the fact that I wore my pants around my waist, and not my thighs, with no underwear showing, as seems to be the fashion at that particular pay phone. I couldn’t have stood out more if I’d had Teddy himself tattoo “suburban mom” onto my backside.

As I drove away, I thought if I ever needed a phone call, tattoo, and a chicken wing, I knew just where to go!

The trip itself felt quite successful. We are beginning to draw attention and funding for “The Haley Vincent Music Therapy Program at Chilgren’s Healthcare of Atlanta at Egleston. We are planning to begin on the transplant floor, and expand from there. We will have a full time music therapist, and a space to store our equipment. Hopefully, we will work up to getting our own “Music room”, maybe staffed with a volunteer. We have to raise $150,000.00 for the first year, and then $50,000.00 a year to keep it running.

This is in addition to our Miracle mail and Grief Package programs.

I am planning to personally contact some people who may be able to be donors to this program, and we will be hosting fundraisers as well.

If you would like to help, please go to The Haley Vincent Foundation

We also have CD’s on sale for $10.00. They are really great! Make great gifts!

I have more to tell you guys, but it is getting late.

Love you, mean it.
Cheryl

Wednesday, March 12, 2008 11:44 AM CDT
I know! I know! It has been FOR-EV-ER since I have updated.

And, I will tell you why…..

These last few weeks have been strange. Some really bad stuff, and some really good stuff. And it’s hard to know which “stuff” to write about. It doesn’t feel right to talk about children suffering in one breath, and something funny that happened to me in the next.

But then I realized that is how life happens. And it can be confusing…..what to say, what to think.
We love and serve a God who gives so many blessings……..and then also takes away. It is a confusing world.

I was in Atlanta for a meeting with the CHOA folks about our Foundation, and it could not have gone better. But, that is for next time.

I, along with the rest of Kingsport have been preoccupied with the sudden critical illness of a local middle schooler.

Any time something like this happens, our hearts break. But, for us, this girl was special. You see, Erin was in the same class as Haley would have been in. They had all the same best friends. And, like Haley, she died of complications from septic shock.

When I heard last evening that she had died, I shed many tears. I cried for Erin’s mom and dad, and I cried for us, I cried for all of those little girls who will now have attended two funerals for best friends.

And, then I prayed for a very long time.

And then I imagined these two girls meeting in Heaven, and all of the people they now have in common. I can just see them discussing teachers, friends, and being cheerleaders.
And I smiled a little as I thought about Jesus having his own cheerleading squad in Heaven.

If you live here and know this family, please take it from someone who has worn those horrible shoes. They will need you. Not just in the first weeks, but in the months and years to come.
This family, thankfully, has a strong Christian faith, and that is giving them some peace. But, it doesn’t make it hurt any less.

Check back in a few days, I’ll have an update on my Atlanta trip.

“His master replied,“Well done good and faithful servant…..come and share in your happiness”
Matthew 25:23

In His Love,
Cheryl

Friday, February 22, 2008 11:31 AM CST

Hey all!

Thank you guys so much for going to Aiden’s site and supporting this amazing family.
As I read some of the guestbook entries, I was, as I am so often, humbled by the goodness of people.
And then, I had…….just for a second…

I am ashamed to admit…….But I NEED to confess it…..

I had, just a moment of….

“Guestbook Envy”

But, I’m over it now. Pretty much. Yep, over it.

Anyway…..

Last night we were sitting on the back deck, it was cold but really pretty. I was watching the kids play and the dogs run, and the beauty in the naked trees, and cloudy skies.

Then Nick’s cell phone rang.

Interrupting my communing with God and nature were the electric chords of AC/DC’s “You Shook Me All Night Long”.
I have heard that song before. I m a rock ‘n roll child of the 70/80”s.
Now, I knew that I knew this song, because I could sing along with every single word.

Every Single Word.

Hearing it now with grown-up ears. I am surprised my ears didn’t actually start bleeding.
I am surprised it is LEGAL to sing such lyrics.

And it occurred to me, that just as God uses music to move us into powerful worship, Satan can use our music as well. Give it a catchy beat, and we don’t even realize what we are opening our minds….and our hearts to.
Evil takes so very many forms, we have to be ever viligant.

And, I am embarrassed to admit that I have not monitored the boys’ music choices as well as I have monitored (interfered!) in other areas. I looked at Nick’s ipod and he had several songs with an “explicit” tag on them. I can’t even imagine the words to those songs.

So, we talked about it, but Nick is almost 17 now, he should be making the right choices without us forcing him to. I told him it was up to him, but I would be praying that he picks the right paths, and becomes the person God wants him to be.

Of course, I pray that for all of us.

In His Love,
Cheryl

Wednesday, February 13, 2008 10:27 AM CST

Hello friends.

Instead of my usual update, I am just asking you visit a couple of dear people who need prayer today.

I just updated Aiden's site for his mom, Lisa.

And also The Smith Family

In His Love,
Cheryl

Thursday, January 31, 2008 2:24 PM CST

It sort of struck me tonight as I was watching “Barnyard” with Kendall.

I don’t cry every day anymore.

I think I already knew that, but this is the first time it really came into my conscious mind.

I was remembering something she once said, “Mommy, why are your eyes always leaking?”

Is it strange that I find it sad that I don’t cry every day?

Is it strange that after making that statement I want to qualify it, by saying “I am still in a lot of pain, I am still grieving, I still miss her SO much, I still think about her every hour of every day, and I still cry lots of days, just not every day.”

All of a sudden, I am “used” to her not being here. I don’t look for her in the backseat anymore. I don’t think, “Oh, I need to tell Haley that” anymore. I automatically say “5” when asked how many is in our party. I find that incredibly sad that this is our new reality.

It feels terrible to be so desperately sad all of the time, but I am learning, that it feels pretty crappy to NOT be sad all the time too.

It feels wrong. It is not ok. Nothing makes any sense in this strange new world.

And yet, this is exactly as the Bible says it will be.

“ a time to weep and a time to laugh,
a time to mourn and a time to dance….” Ecclesiastes 3: 4

But, how can I dance? How can I dance when my little girl is not here to dance with me?

Does the dancing part come in Heaven? Will we dance together?

I often think of, and listen to, a song we had sang at Haley’s funeral.

I Can Only Imagine by MercyMe

I can only imagine
What it will be like
When I walk
by Your side
I can only imagine
What my eyes will see
When Your face
Is before me

I can only imagine
When that day comes
When I find myself
Standing in the sun

I can only imagine
When all I will do
Is forever, forever worship You

Surrounded by Your Glory
What will my heart feel
Will I dance for you Jesus
Or in awe of you be still?
Will I stand in Your presence
Or to my knees will I fall
Will I sing “Hallelujah”
Will I be able to speak at all?

I can only imagine

For me, that song captures the “awe” of what Heaven will be like.
Unimaginable happiness.
Completeness that this world cannot give us.

I used to not be able to listen to that song…it was too sad.

Now, I find comfort in that song. I like to imagine what it will be like….when God puts everything right again.

And, I am sure that all this MEANS something…I just am not sure WHAT!

But, for today….I am imagining Heaven.

Cheryl

Tuesday, January 22, 2008 11:59 AM CST

The night that Haley died, I remember driving home from the hospital, looking at all the dark houses, and thinking about all the people who didn’t yet know that my world had just collapsed.

I looked up into the sky, half expecting to see News choppers flying around. I wondered how such BIG news to me……would never even be known by the vast majority of people.

When a child is murdered, there is little else on the news. Millions of dollars are spent finding and prosecuting the criminals. As well it should be. It is unspeakable to hurt a child, it is outrageous.

And so, we as a people, are outraged. We hear these childrens names, find out details of their lives…and their deaths. And, with every news report, our outrage grows.

And yet…..when an ill child’s insurance company won’t pay for treatment, even if it threatens the child’s life….the FBI doesn’t step in…..no, the people who know and love that child do everything they can. Without the news coverage. Without the outrage.

Where is the outrage that our kids are dying?

Where is the outrage that MY daughter could have been saved with a liver transplant. That kids are dying EVERY day waiting for organs?

Where is the out rage when less than 5f money raised for cancer research goes to pediatric cancers?

Is one child’s death more newsworthy because of the way she died? Is one child’s life more valuable than anothers?

I think we SHOULD absolutely be horrified when a child is killed in a deliberate fashion. I can think of no worse crime, and no worse way to lose a child.

I just wonder why our kids dying from illnesses, that have treatments, or could have treatments if funds were available don’t seem to matter.

Because they matter to us.

Sunday, January 20, 2008 8:41 PM CST
Hello my friends,

Well, this is a little better than usual, huh? Only a week or so between updates.

I was cleaning out our bonus room, which is a large room over the garage that we use as a game room/office/guest room, and it was crazy messy.
I decided to do some “Spring cleaning” and was going through every drawer, closet, toy box etc. I found a three ring binder, and while leafing through it, Haley’s handwriting jumped out at me.
I realized she was writing her own answers to young children’s favorite questions. This is what she wrote.

“Q; Why is the sky blue?

A: Years ago blueberries could fly. Animals ate them and sit out the juice. The sky immediately turned blue.

Q: Why are balls round?

A: When they first invented balls, they made them triangles. But one day someone started to dance on their ball, and it became round.

Q: Why is the grass green?

A: 4000 green aliens invaded Earth. They found the grass, and danced until they left their green footprints everywhere.”

When I find these things, I am reminded of what a special girl Haley was. How creative, how funny, how smart………And I am reminded what is missing in our lives, how the world is a little less bright. And how very much I miss her.

My next entry will probably have a lot of Foundation news included…I have some dreams for 2008 and our foundation that I want to share with everyone. They are projects I won’t be able to do alone, so I am really praying for God to place our Foundation on people’s hearts so we have a passionate group of people ready to move to the next level.

So, more on that next time.

Love you,
Cheryl

Friday, January 11, 2008 12:27 AM CST
Happy 2008. Woohoo. (she said, sarcastically).

I can’t even remember what it is like to celebrate anything….but, I don’t want to talk about it now….more later.

First, I wanted to tell you all that I started “The South Beach” diet!!

And then, four hours later……ended it.

Did you know butterfinger granola bars are NOT on “The South Beach” diet?? Come on! That is health food if I’ve ever ate it. It is definitely the healthiest thing I eat.

Anyway…..we (Bruce and I ) really are going to give it a try….although I need to eat all my high carb snacks first. So, in starting a diet, I am eating my way through the pantry, trying to empty it. Those boxes of half-price Christmas chocolates seemed like a good idea at the time. Now I have to eat ALL of them….QUICKLY….before I can start my diet!!!

Do you know we have the country’s largest Food City, right here in little old Kingsport?

I sent my boys there to pick up a few things. Nick (16) promptly found friends he knew from school, and ordered Logan (12) to get a cart and call me on the cell phone to tell him what I needed.

Me: “We need bacon, it will be at the back of the store, refrigerated….look for the hotdogs, it will be by them.”

Logan: “I can’t find it.”

Me: “Look harder….look for the lunch meat…it will be around there.”

Logan; “ ummmm. Nope…no bacon.”

Me: “No Bacon??”

Logan: “ I have looked everywhere…there is no bacon.”

Me: “ Okay, go past the milk and look for block cheese, not sliced, the kind you cut up.”

Logan: The only block cheese they have is a foot long.”

Me: “Uhhh…foot long cheese? Are you sure?”

Logan: “Yes, that is all they have.”

Me: “Okay, we need cream cheese…it will be in the same section.”
Logan: “No, no cream cheese.”

Me: “ Fine, go back to the produce section…get me a bag of salad and some celery.”

Logan: “What does celery look like?’

Me: “Seriously??” LOGAN! Seriously??”

Logan: “I can’t find it, and they don’t have bagged salad.”

This child expects me to believe they have no bacon, cheese, cream cheese, celery, or bagged salad at the largest Food City in the nation.
The funny thing is, I know he was actually trying. The whole episode is “So Logan”. My straight-A student who is FLAKY!! Not a lick of common sense, that one.

I finally said,

“What CAN you find?”

Logan: “I see hamburger.”

Me: “Great…get hamburger….and see if you can find some chips.”

They came home, from a store that takes 15 minutes to walk from the parking lot, with a pound of hamburger.
No buns.
No chips.

At least it goes along with the high protein, low carb diet.

I promise to be better at updating. The holidays are always so hard….I just need to veg some times.

Many prayers and love to all of you,

Cheryl

Thursday, December 20, 2007 6:46 PM CST

My dear, sweet friends,

After last weeks post ( or maybe we should call it a rant session), you all rallied around, and reminded me that the I have very good friends who will be there for me, in good times and bad.

So, thank you for that.

And Pamela….Thank you for reminding me of the verse, “Forgive them Father, they know not what they do.” It is so true…they don’t know what they are doing, and I WILL forgive them. If Jesus can forgive them for nailing Him to a cross…..I can forgive a few mean comments.

Is everyone getting ready for Christmas? This year, while we are still scaled way back, the preparations feel a little easier. We have Haley’s stocking hung with the others, and our notes from last Christmas are still in it. We will read them this year, and write new ones to put in it for next year. Eventually, I will put all these “love letters” to her in an album we can look at each Christmas.

I have a “Haley” story for you.

Dec. 12th was our 20th wedding anniversary. Bruce and I went out to eat, and then to Lifeway Christian store to look around. They had all this great art work on the wall, and we spent some time looking at it.

A few days later, I popped back in to buy Christmas ornaments for our Bible Study group when my eyes went to that same art wall.

Right in the middle (Not there a couple of days ago) was a picture of this little blonde girl, in a white sundress knocking on a door. It took my breath away. I examined it, tring to find something that DIDN’T look like Haley. Nothing. It looked exactly like her. Now, it only shows her back, but every strand of hair, her body, her bare feet……looked exactly like her.

I had the overwhelming feeling that this was for us. We had to have it. It was meant to hang in our house.
Once it was down from the wall, I realized there was scripture in the background….”Knock, and the door shall be opened unto you.”

I brought it home. I am giving it to Bruce for Christmas.

I showed it to the kids to make sure I wasn’t crazy, and they agreed it looked just like her. Logan even said, “That’s kinda freaky.”

Kinda freaky…….and kinda cool.

Enjoy your Christmas. Hug your kids.

Cheryl

Monday, December 17, 2007 2:26 PM CST

Well……What should I write about today??

So many options…….

Oh, I know.

Let’s talk about those people who are talking about me, saying I am so depressed, I never go anywhere….and even other, worse stuff.

First, just because you say, “bless her heart” AFTER the backstabbing comment doesn’t mean it’s not gossip. For example,
“She’s so depressed, bless her heart.” “She stays in bed all day, bless her heart.”
“Can you imagine how her children feel, seeing her like that, BLESS THEIR HEARTS!!!”

It is gossip. It is having a critical spirit. And, it is simply not true.

So, just so you hear it from me.

I don’t stay in bed all day.

I almost always get dressed. Some days I don’t, but pajamas are comfortable, and some days I just feel like staying in them.

I don’t go to a lot of sports events because I don’t enjoy them. I usually leave with a headache. I NEVER went to those things! You just didn’t notice back then.
My husband likes to go…he goes. And my kids understand that and are fine with that.
If THEY are fine with it, YOU need to be fine with it too.

Yes, I am still grieving.

No, it isn’t over yet.

I’m sorry if that inconveniences you. You should feel it from this end.

I don’t cry all the time anymore. I try and save my tears for private times.
Sometimes that works, sometimes it doesn’t.

Hmmm..I just read that back, and it seems a little harsh.

But, I am not changing it.

Because words can hurt. They have hurt me.

Cheryl

Sunday, December 9, 2007 12:37 AM CST

First, I need to say a big “Thank You” to all who have emailed or signed my guestbook with your words of encouragement.

So, I have been thinking…..and what is on my mind now is that grief is selfish.

And, really, I don’t like being so self-absorbed all the time, but I also don’t really know how to change that. It is like I have to focus on it constantly, in order to cope with it.

I was thinking today about my time management…and what I really DO with my time.
I think I can (roughly) function about 50 % of the time. The other 50% I have to withdraw, do nothing, think, replenish, rest, pray….whatever I do….that my emotional self needs to stay somewhat sane.

The other 50% I use to take care of my family, the Foundation, and whatever small things I volunteer to do outside of the house.

And what I have realized is that 50%, while better than nothing, still doesn’t leave me enough time or, more importantly,enough energy to do the things I want to do, and to do them well. To give others the attention they need.

There really isn’t an easy solution to this problem, as I just don’t have it in me to give more than that. I am just not ready. Not healed enough.

So, it becomes a question of priorities, I suppose.

It reminds me of “The First Fruits” sermon. Our first fruits should be reserved for what is most important in our lives. God first, then family, then works…….

It sounds so simple.

Wait. Maybe it IS simple. Maybe I am making it too hard.

I am definitely doing something wrong. Because I feel stress….and guilt….and then more stress….and then the more I can’t do….well….the more I CAN’T DO.

I am on a hamster wheel.

So, let me just say publicly…if I have let you down in any way….I am sorry….it isn’t personal….it is grief. Grief consumes my time and my emotions in a way that defies words.

If I promised to do something, and then couldn’t, if I didn’t return your message, or write that email, or make time to go to that event.
It isn’t you. It’s me. And, I am sorry.
Believe me, I feel terrible about it.
But, all I have right now, I need to give to God, my kids, and Haley’s Foundation….and I even fall short ( regularly) in those areas.

But, I only have what I have.

It is what it is.

I am where I am.

I appreciate SO much the friendship and support I find here. Thank you for that.

I want to end this with some prayer requests. I can (almost) always pray.

Aiden

Praise for Sarah!

Ashley, in Jesus’ arms tonight

Dylan

So many children and their families…..

Praying,
Cheryl

Tuesday, December 4, 2007 10:30 AM CST
Be warned…this is long!!!

Just a note, before I start…my email is not functioning well right now. If you have written to me, I have your email…I just can’t open it!! Or reply. Hopefully, I will get it fixed soon.

The following link is the audio for last Sunday’s talk at church.
Listen to Sunday’s message here

Below, I am still attaching the text, as I don’t have anything too new to journal…although I have lots of new prayer requests. In fact, next week I may just do a prayer request update!

Until then….

Parts two and three (Part one is in journal history)

In December 2004, we went on a Make-a-wish trip to Orlando. Haley was pretty sick for the whole trip. We weren’t able to take advantage of most of the things Make a wish had planned for us. Haley’s pain was at a level where she was requiring morphine, and her energy levels were extremely low.
I was so sad for her that she couldn’t even leave her illness behind for this one week…it followed her everywhere…it was relentless.

When people asked me about the trip, I said we had not had a good time, that there were days we didn’t even go to a theme park, that we spent a day in the emergency room, that Haley’s eardrum burst, and I was on the cell phone constantly with her doctors the whole time. I was so disappointed for her.

And then I listened to Haley responding to the same question, “How was your trip?”. She told people it was wonderful. She told them about the big pink button she wore that identified her as a MAW kid, how the characters would run to her, how she was whisked to the front of every line. She told how the resort we stayed at was just for kids…..and how everything was free. You could play free arcade games or miniture golf…how the ice cream shop was open 24 hours a day, and you just went in and got free ice cream….anything you wanted. She said it was magical. She said she felt like a queen.

And once again, I found myself learning from this child. Haley knew how to appreciate her life, despite her limitations. She never focused on what she could not do, but what she could do.

Just weeks after this trip, in Jan of 2005, Haley suffered another devastating setback. She and I were in Atlanta for a routine hospital visit.

A big ice storm was moving in to the Atlanta area, and we decided to wait it out in our apartment in Atlanta. We bought ice cream and settled in with season three of the Gilmore Girls, our favorite show to watch together.

And then Haley got a headache. I knew immediately something was really wrong, I also knew the city was paralyzed with ice. I debated momentarily on calling an ambulance, but I was afraid they wouldn’t be able to get to us fast enough.

I rushed Haley out to our car to find the doors frozen shut. As she leaned against the car, I beat on the door locks with my shoe, finally getting one open. I got her in the car and started trying to beat off the inch thick ice on my windshield. I used a curling iron I found in my car, and I can still remember the plastic breaking off and flying as I beat the glass.
Finally, I had a small hole…enough so I could drive a few blocks to find help. I pulled into a parking lot and begged the few people I could find to help me. Three or four people started breaking ice off my windshield and I sped off to the hospital.

By now, Haley had lost consciousness and was vomiting. I was screaming at her to talk to me…to say something…but she was silent.
I arrived at the hospital and dragged her onto the ER, where thankfully people took over for me. We were rushed into a trauma room, where an ICU doctor met us. He didn’t leave our side until Haley was taken into surgery which was just about 30 mins later.

I next saw her in the ICU, her hair was still long on one side, and completely shaved on the other. She had a huge incision in her skull and was on a ventilator. The doctor told me she had had a spontaneous intracranial hemmorhage…an artery had burst and there was significant bleeding into her brain. He didn’t know if she would wake up or not.

Four days later she did wake up. As she slowly learned what had happened, she was not thrilled to feel all of her hair gone on one side.
When she found out they had operated on her brain, all she wanted to know was if they had taken out the part of her brain that writes songs.

A week later we left the ICU for a regular hospital room, and Haley saw her reflection for the first time. Her comment? “Never let a neurosurgeon cut your hair.”
Not two weeks later, Haley wrote the song, “Everywhere”. A song about how God knows what He is doing, even when we don’t understand. In my opinion, it is the most powerful song she ever wrote, and you will be hearing it here later this morning.

Other than a very few visits home, Haley and I had to live in Atlanta now. She was too sick to be at home, away from her doctors.

We had nine more months together after that. Nine months where we grew even closer. Haley became slowly more ill and more unable to do things, so she and I just hung out. We listened to music, watched hours of the Gilmore Girls, we had thousands of conversations, we ate out together, occasionally visited the mall or the movies. Haley entertained herself with crafts and books and writing. We had a karaoke machine in Atlanta and we would sing for each other.

One week we came home for the weekend…and my nightmare began to unfold.

It is funny how the worst day of your life can start out just like any other day. I didn’t know when I got up that Haley only had hours left to live. How could I not know that something that earth shattering was about to happen.

I don’t talk much about the day Haley died. It is so painful, and it feels like a sacred memory…one that should not be shared lightly.

A lot of stuff happened, and it happened very quickly. I knew, not long after we arrived at the hospital, that this was going to be serious.

Her condition deteriorated rapidly over the next few hours, and once again, we found ourselves in the ICU surrounded by medical personnel.

Haley was having a lot of difficulty breathing, her heart rate was very high, and her blood pressure very low. Doctors were trying to insert a central IV line into her neck, while others were sticking her arms and legs trying to get blood.

As I often did during times like this, I started to sing to her, hoping to distract her from what was going on. I started to sing the theme song to the Gilmore Girls, and in perfect Haley-fashion, she immediately corrected me saying, “No..no..it goes like this…” and in a clear angelic voice she began to sing. There were about 10 people in that room working on her, and as soon as she started to sing, not a sound was made. She sang that song from start to finish…the Gilmore Girls song. She sang it for me. Once again, being the wise one…being the grown up….comforting me.

And then she lost consciousness, and although the doctors did not give up, I knew I had heard her voice for the last time.

As her body failed, and the doctors continued to work on her, I asked him, “How long will you continue this?” And he said, “Until you tell me to stop.” And I said, “Stop. Let her go peacefully.”

And her dad sat on one side of her and me on the other, and we held her and kissed her, we told her we loved her and how proud of her we were….and we told her to go to God.
And she did. From our arms to her Heavenly Father’s.

As unbearably sad as that moment was, there was also a feeling that we had been a part of something very sacred. The three people that were with her when she came into the world were there as she left it.

We left the hospital that night and walked into a new world. A light had forever left our lives, we would never, ever be the same.
We were forever changed for having known Haley, for having loved her,…. and for having lost her.

And so I wonder, as I prepared to give this message today, What have I learned from this? I thought about this a lot. Were there lesson in all of this?
Of course.
If we didn’t learn, and grow, and change from this, then our tragedy is compounded.

I have learned that bad things happen to good people. Being a Christian does not make us immune to tragedy. And God doesn’t promise us that. No where in the Bible does it say Christians won’t suffer.

And there isn’t anything special about us. We are you.

Everyone of you can imagine getting THAT diagnosis or THAT phone call. Having what you fear most actually happen. And you need to be prepared.
Just as Jesus went ahead to prepare a place for us, we need to prepare for Him. For a relationship with Him.

Because when the rubber hits the road, and you are brought to your knees. He is the only One who will still be standing. He is the shelter from the storm.
And in the midst of tragedy, when your whole world is shaken, your faith will bring you through. We need to be building that strong foundation of faith BEFORE the tragedy.

Having that already in place was, for me, the difference between surviving this and not surviving it.

I have learned that we are not in control. That no matter how we try to control and micromanage all things that ultimately we have to surrender that control to God.

And we have to trust Him with what we love and treasure the most.
We are helpless before God.
But being helpless is not the same as being hopeless.
I have so much hope.
To me, hope is the belief that things will be set right again. And I believe that. God will set things right again. Not on this Earth. But, one day, all things will be right again.

People have asked me if I question God, or blame Him, or ask “Why me?”. And I have to say no, I really don’t. Why NOT me? God says, “My ways are not your ways.”
To me, that means we aren’t supposed to understand everything in this world.
The Bible also says, ‘God can make good come from every situation’ and that means every single situation. Even this one.

We can’t make sense of it. It feels senseless to us. But, we can celebrate with the very angels in Heaven as lives are touched and changed and impacted through one little girl’s life.

I get emails almost every day from people whose lives will not be the same for having known Haley…or even from having known of her. Haley died two years ago, and instead of slowing down, our website grows every day. We have had approx. 350,000 visitors. That’s an amazing opportunity to share our faith through Haley’s story.
I wanted to just read you a couple of examples of emails I get.
These are just a few of the ones I have received in just November of this year. In just this last month.

(Edited for time)

1. I've made a personal goal of committing time to God every day and making a point to not push it to the side! It is during that time that I really connect with Him...many times that is the point during the day (or one of many) that I listen to Haley's beautiful music. I know that she is right there with me, just as God is. I know that she is right there with you as well, watching over you and protecting you, just as you protected her so well during her time here on earth.

2. Right now is all we have .... so I don't want to waste it .... that is what sweet Haley began teaching me even before I had a sick child. I found you guys a while before Ryan was diagnosed with a brain tumor - God was getting me ready for the unthinkable - He led me to you. Because of Haley and because of you - I KNOW, I have walked this dreaded road in a very different way than had I never "happened" upon your site.

3.I did want to share with you how Haley changed my life.. I (have)visited(your website) several times, in love with Haley's beautiful voice and touching music.
In June, I headed to Los Angeles to work at a camp for special kids: and one week it was kids with liver disease and liver transplant. I had a very special girl in my cabin who was going through a very hard time. She was with me in the children's hospital on site, very very sick and very very homesick. I was struggling to comfort her, and as her parents were far away, I knew that it was my job to find a way to reach this little girl, to connect with her and find a way to still her mind, ease her pain, and bring her some peace.
As I held her in the bed, she started asking for her "haley songs". The other staff were puzzled and didn't know what a "haley song" was.I knew instantly what she wanted and rushed to get her Ipod. I sprinted back toward the hospital, singing in my head "every where you look, he's standing right there...". I held my little camper, rocked her hurting body, and with one headphone in her ear and one in mine, we talked about Haley. Her shaking stopped, her crying ceased and we talked about what a beautiful, brave and hopeful girl Haley was. And I told my camper how proud Haley would be of her.
And in that moment, Haley had given me the strength to be the comfort this little girl needed. She had opened my eyes, so that I could see what this little one had been through. And she opened my heart, so that I could connect with my camper, give her a safe place so far from her home.

4.Sometimes the legacy we leave behind can live louder and stronger than most people's life that are lived here. It is how we choose to honor that person. Being sick really is only temporary. There is healing on our Father, and one day if we choose Him, we will all get to see His Glory.

5.I had the privilege of going to the "Casting Crowns" concert tonight…. It was an incredible experience. Before going, I went (to the casting crowns web site)and re-read the letter they posted on their site that you had written to them.
Before they started to play "Praise You In This Storm" they brought up Erin's mom, and she prayed aloud for all of us. I sung that song with tears in my eyes for Haley and for your family. On the carride back to school, I pulled out my ipod and we listened to Haley's songs. The five other girls I was with were absolutely astonished and amazed by her gifts, both spiritually and musically. We had a long discussion about how God uses people for special purposes and to reach out to people. It is clear how He has used Haley, but I don't think anyone could have ever guess how many lives Haley would touch all over the nation. God is so great...and that's how we can praise Him through this storm!

And I do praise Jesus in this storm. I praise Him in ALL things….even the hard ones.
God doesn’t owe me anything…and yet, He gives. He gave His Son, to die for ME, to die for Haley…that we could have eternal life. Together forever. All of eternity is not long enough to praise Him for that.
God knows. He knows my pain…and he knows yours. He holds in His hand every tear we cry. Millions of tears. He knows how much I miss Haley. And He knows how much I love her…because as much as I love her….He loves her even more.

From Haley I have learned about courage. She taught me about being scared, but getting through it anyway. That’s courage. She taught me about finding the joy in every day, no matter how bad the day seems to be. She taught me about kindness and compassion in how she chose to live her life. She taught me about strength. And boy, did she teach me about faith…her faith was huge. I hope that through me, you all have learned a little from Haley today.

I want you to remember and take home this…..In the face of suffering Real suffering and tragedy, my daughter sang. That’s where God is in this.
Listen.
(“Everywhere” plays)

Friday, November 30, 2007 10:34 AM CST

Hello friends,

Below is part one of my talk for Sunday. I am still working on parts two and three. It may be cheating a bit, but this talk will be my next few updates, as I am working so hard on it.

Stay tuned for part two.

Love you guys!!
Cheryl

I am not a pastor or a public speaker. I’m just a mom. I am much more comfortable being in the audience than in front of it.
But, I have a story. An important story. One that only I can tell.

It’s a story about an all-American family who paid their taxes, went to church every Sunday, and generally, followed all the rules. My family. Our lives were changed forever in one moment. Our lives became forever divided by “Before” and “After”.
Before we lived with innocence and abandon. After we started living for just one more good day…not for the future anymore.
That day was Jan 22, 2001. We were busy with four beautiful children. Nick, who was 9, Haley 7, Logan, not quite 5, and Kendall, about to turn 2.
Haley was in the first grade, and she woke up with a fever and a sore throat, like thousands of children do every day.
But, unlike most other kids, Haley’s dad was a doctor and happened to feel her stomach that night.
He said to me the words that would forever change my life. “Her spleen is enlarged.”
And, just like that, the fear that would soon become my constant companion, gripped my heart.
Our “before” life was over.
24 hours later, she was in the ICU. 48 hours later we a machine had to breathe for her, and we were being flown by air ambulane to Duke University.
Her doctor put a transfer paper in my hand to give the doctors at Duke. I will never forget what is said.
“Critically ill child with multiple undiagnosed disease processes.”
I couldn’t believe he was talking about MY child.
When we landed at the airport, an ambulance was waiting for us, and as the paramedics and nurses piled us in, I heard one of them say to the driver. “Lights and siren.” And although I felt oddly comforted by that, even as my brain was screaming that this could not be happening, that she had been roller skating at a birthday party four days ago, this had to be some kind of a mistake.

But, it was no mistake. There was a very real chance our daughter might die.

She didn’t die that night. She was still strong, a real fighter. And they didn’t find out what happened at Duke either. They said sometimes kids just got really sick and there was never any real answer. Just go home. Be happy she’s better.

But, she never got completely better, and two months later we had our first real diagnosis. Autoimmune Hepatitis. Her own immune systen was attacking and destroying her liver. And because her body was so bust attacking itself, it couldn’t handle all the real things immune systems are supposed to fight.

She was in a lot of pain and she could not understand why Jesus didn’t just heal her. She said, “Mom I am praying so hard….why won’t He make the pain stop?”

No seven year old should have to ask that.

And, I prayed to God….I said, “I would rather she lose her life than lose her faith.”

A year and a half later, we found out she had lupus as well. I remember telling her doctor that I didn’t believe him. As if I could somehow make it not so if I just didn’t accept it.
I told him, “It just isn’t possible for a child to have two separate life threatening illnesses.” He looked at me with the kindest eyes and said, “Yes, it is. It is what she has.”

Within six months, the lupus had attacked her heart, lungs, kidneys, and blood vessels. And, the other disease kept attacking her liver. We were told she needed a liver transplant, BUT, she couldn’t survive the surgery. We had to get her lupus under some kind of control.
Around this time, I started Haley’s website as a way to keep the many people concerned and praying for us up to date. It ended up serving as a life line and a link to the outside world.
It would take all morning to chronicle our medical addyssey. Suffice it to say, it was long and hard.
We spent months in Atlanta away from the rest of our family. We spent countless days and nights in the hospital.
She had three separate ICU visits, twice requiring mechanical respiration again. She had four live biopsies, two bone marrow biopsies, two rounds of chemotherapy, a drain placed to her heart, a case of Shingles, her bladder shut down requiring caths every 8 hours for weeks, and her foot became temporarily paralyzes, necesscitating the use of a wheelchair, then a walker.
And, that wasn’t even our worst year….not by a long shot.

And Haley responded to this stress…..by turning the focus onto others. She befriended the kids in the hospital, and would save her stickers for the younger ones. Soon, at her direction, I was purchasing toys, books, movies, even pajamas for these children that Haley had such a genuine concern for.
Soon, she got me into the swing of things, and we were making care packages, with the small things that we knoew, by experience, were so very needed.

And then, Haley started to write music. She had such a gift and talent for it. She had found her voice…..and she shared it. She gave the most precious thing she had to give. She gave her heart.

And in doing that, the most amazing thing started to happen. Her music seemed to have an almost supernatural effect. People stopped. Children danced and laughed. And Haley’s faith grew and grew. Her performances became very “in demand”, and we could barely keep up with our production of CD’s. We gave away hundreds of them.

She sang for the governor of GA, for baseball great Tom Glavine…..she sang at countless fundraisers….she even sang The National Anthem at Turner Field.

Despite her growning celebrity, Haley remained unaffected, preferring to spend time at home with her friends to the spotlight.

To be continued...................

Friday, November 23, 2007 6:06 PM CST

I am sorry to keep you all waiting for an update. I know some of you have stopped checking in regularly, and that makes me sad.

I am writing a “speech”, for lack of a better word, that I am giving next Sunday at church, and this has kept me really busy.

But, today, I had to write. I love the stories you all are leaving in my guestbook, I love hearing how Haley has impacted your lives. I am going to try and incorporate them into my talk.
So, thank you so much for sharing them with me.

I have really had to reflect on this journey, and what it all means to me….what I have learned along the way, and I am a bit amazed at how much I am figuring out about myself. Or more accurately, what God is revealing to me.
I don’t think I have had much “quiet time” with Him. I never really let myself BE quiet. I fill my life with noise and distraction, because that way I can control what I think about….and no sneaky and painful memories come in uninvited. I suppose it is normal to want to protect ourselves…guard our hearts.

But, I am working on “Be still, and know that I am God.” Psalms 46:10

I think if I could “be still”. God could do some pretty awesome things.

Trying to sit still,
Cheryl

Sunday, November 11, 2007 2:21 PM CST

I have written this update in my head a hundred times. So much has been going on.

I really thought I would share a funny Food City story…once again my shopping was eventful.

I also expected to write about our trip to Atlanta and the special way we honored Haley on her birthday.

I definitely thought I would write about my dear friend Lisa, and how she traveled so far to help with the party, only to have Aiden admitted to the hospital practically the second they got home.

But, what is on my heart today, is a boy gone way too soon.
Another wonderful, giving family dealing with an unbearable loss.

Jon, a senior at DB high school, just one year older than Nick, fell off a golf cart, at the country club where he worked.
And in an instant, life is forever changed for everyone who knew and loved him.

In an ironic twist, Jon’s dad is a hospital chaplain. who dedicates his life to helping others through the worst moments of their lives and now finds himself in need of that same type of comfort.

.And now, as a community, as followers of Christ, we need to rally around and minister to him, his wife, and their daughter.
You can leave a message of support or a prayer at his website caringbridge/visit/jonmetcalf

I often wonder how any of us survive this kind of blow. People way smarter than me have written books on it. But, I think it is pretty simple really.

“But Jesus looked at them, and said to them, “With men, this is impossible, but, with God all things are possible.” Matthew: 20-26

Cheryl

Friday, November 2, 2007 8:31 AM CDT

Monday will be Haley's 14th Birthday. She is celebrating it with her Creator in Heaven, with a host of angels singing their Glory.

Monday on Earth we will celebrating Haley's life at Egleston Children's Hospital in Atlanta. We will be having Haley's 2nd Annual Birthday Party for the children. Bringing gifts and crafts and snacks to the kids who are unfortunate enough to have to endure a day or life in a hospital. Haley would have loved this. She does love this.

Only 2 days before Haley died, she wrote an essay. It was delivered after she had died by her homebound teacher, not knowing that she was gone. It seemed like an extra treasure from Heaven. An essay written by Haley just 2 days before she died. It goes like this:

I Am by Haley Vincent

I am a special girl who loves to sing

I wonder if I have a talent I haven’t discovered yet

I hear the feet of one hundred dogs coming to lick my face

I see a thousand colored roses blooming right before my eyes

I want an airplane to fly me first class to wherever I want to go

I am a special girl who loves to sing

I pretend to sing in front of one million people on American Idol

I feel happy when I think about singing on stage

I touch the hands of people who dream of meeting me someday

I worry when I think about getting a liver transplant

I cry when one of my friends from Caring Bridge dies

I am a special girl who loves to sing

I understand that I need a new liver

I say “God is watching over me”

I dream about getting better

I hope I will get married someday

I am a special girl who loves to sing

The End

Oh yes, sweet girl, you were SO special, and we miss you so very much.

Saturday, October 20, 2007 1:29 PM CDT

*Prayer requested for Sammi*
The link to her website is...

http://www.caringbridge.org/visit/byesiblings

Wow! Two updates in a week.

I am actually not being good about journaling….I am being bad about procrastinating.

Housework.

The bane of my existence.

Who is a housewife (or for those of you PC people Homemaker…stay-at-home-mom…whatever) who HATES housework. I also hate laundry, cooking, paying bills, and any type of yardwork.

And here’s a dirty little secret….I hate school activities. I hate arts and crafts, football games, band competitions, parent teacher conferences, and any type of party.

I am not proud of that. Society says if I love my children (which I really, really do) I not only should DO these things, but I should LOVE it.
I should WANT to get my hands all sticky with glue and glitter. I should LOOK FORWARD to sitting in a far too little concrete seat, with a bunch of screaming, sweating parents, watching football games where I can’t even identify my own kid.

But just so you know…I DO go to these things. Next week, in fact, we are driving to Nashville for a band competition. I have volunteered to help at the Halloween, Christmas, and one other party (I can’t remember now which one) In Kendall’s class this year. I just don’t love doing it. I wonder if that makes me a bad mom.

What I do enjoy is just hanging out with my kids. I love unstructured time, where conversations just evolve. I love eating dinner with my family (even if I don’t want to cook it), I feel very uneasy when one of my chicks is out of our nest. I want us all together…….just….being.

It’s what I loved best with Haley too. In fact, it may be how I ended up this way. She had so much pain, she was so limited…not even attending school, much less doing extracurricular stuff.
But, we had so much fun just hanging out. Just enjoying each other’s company.
We made each other laugh. We watched “Gilmore Girls” and “Friends” for hours on end.
We made spontaneous trips to the mall of to the movies. My girl loved to shop. She was rarely too sick for a trip to “Limited Too.”

She was so funny, she always made me laugh. She was creative and interesting. I loved hearing her take on things. I loved to watch her draw and write stories. And I could listen to her sing forever.

And that is how I feel about Nick, Logan, and Kendall too.

I may not love the concert events, but I could listen to the boys play their music forever.
I love to just quiz Logan on History and Math or let him just talk about the Wars. I just bask in his brilliance. (Logan is a straight A student…okay, the occasional B slips in…he has been invited to take the SAT or ACT with the high school kids this year…he is in 7th grade…AND he has his sights set on Yale..we’ll see.)
Sorry, the bragging mom popped out there for a second.

And Nick….he shares so much with me. It makes me feel so good that he CHOOSES to spend time with me. He trusts me enough to value my opinion. He brings home decent grades, is a talented musician, and has tons of friends. He is a great kid, and I love hanging out with him.

And Kendall. At first glance, she seems the polar opposite of Haley. Major tomboy vs girly-girl. But, I think Haley’s influence shows in her most of all. Haley left the best of her heart imprinted on Kendall’s.
She doesn’t even realize the things Haley taught her, but I do. I see Haley in her every day.
She is compassionate and protective. She is funny and kind. AND she lives every moment of her life to the fullest.

So, if I am such a bad mom, according to society’s standard, why are my kids turning out so unbelievably great?

Does society have it wrong?? Or do I? Or is there a happy medium? Hmmm.

Well, the house isn’t cleaning itself….wonder what else I can find to do instead….

The Maid,
Cheryl

Sunday, October 14, 2007 7:39 PM CDT

I know, I know. It has been forever since I have updated here. I am really sorry…I think of all my cyber friends often…it has just been harder than usual to do anything. Even just typing.

It’s depression. Mind-numbing, body-paralyzing depression. And, I seem to be in quite the funk right now.

So, I am working on it.

But, I don’t want to talk about it.

Instead, I am going to treat you all to a story that I hope will make you smile. Something good should come out of my humiliation!!

The other night, I was sleeping on the couch in our “bonus room”. Not an unusual thing for me, as I am a notoriously bad sleeper, and I hate to keep Bruce awake with my nighttime antics. At least those he doesn’t WANT to be awake for.

So, because I have had a bad night, Bruce and the kids let me sleep in. I wake up around 9:00, and just lay around watching TV until my bladder started reminding me I needed to get up.

So, I go to the door, which opens out, and…..WHAM!! There is something wedged against the door, and it won’t budge more that a half an inch.

I figure out that it is the metal door to the air conditioner thingy that holds the filter, and it is STUCK. I mean really stuck.

This is the part where I need to tell you that realizing I can’t get out did NOT have the effect of making me have to pee less. In fact, apparently panicking makes the bladder much fuller.

The opening is not big enough to fit my fingers through, and I quickly scan the room. Surely, I have seen enough McGyver episodes to fix this. Uhhh…no. I tried for an hour or so to get the thingy unstuck before I gave up.

I had to finally call someone to come and rescue me, but I was trapped in there until lunchtime.

And if you’re wondering about the bathroom issue…let’s just say, a girl’s gotta do what a girl’s gotta do.

Grateful for a bathroom,

Cheryl

Wednesday, October 3, 2007 1:47 PM CDT

"Real grief is not healed by time... If time does anything, it deepens our grief. The longer we live, the more fully we become aware of who she was for us, and the more intimately we experience what her love meant for us.
Real, deep love is, as you know, very unobtrusive, seemingly easy and obvious, and so present that we take it for granted.
Therefore, it is often only in retrospect- or better, in memory- that we fully realize its power and depth. Yes, indeed, love often makes itself visible in pain."
-Henri Nouwen http://www.henrinouwen.org

Friday, September 28, 2007 3:33 PM CDT

As we approach our 2nd anniversary” of Haley’s death, things have been bad.

This one is harder than the first one. Maybe because I no longer live with the delusion that time will make things better. Two years has made nothing better. Maybe I am better at pushing feelings down or pretending for other people, but where it matters, deep in my heart and my soul, my pain and my devastation are as raw and deep as they were two years ago.

I miss my little girl with every breath I take. My thoughts continue to be consumed with missing her. Every thing in my life pales in comparison to this heartache I endure every minute of every day.

I was watching some reality show recently, and the reward challenge was a 5 minute phone call home. They had been separated from their loved ones for 20 days, and yet they were all crying like babies to talk to them.
If I could have a 5 minute phone call with Haley, that would last me my whole life. Just one more chance to tell her what she meant to me, how lost we all are without her.

As I go through my day to day life, I find myself thinking that life is really unbearably sad. And I can’t believe how very hard it is to continue to go through the motions. Some days are worse than others, but every single day is painful.

Feeling lost,

Cheryl

Friday, September 14, 2007 1:59 PM CDT

Under a direct command, and possibly the threat of physical violence, I am finally updating my site.

Seriously, I humbly apologize to those of you who have been faithfully checking in and finding…..nothing.

My only excuse is that life has been coming at me so fast and furiously lately, that I have chosen to bury myself under a blanket and hide from it.

And because so much is rolling around in my brain, it has been hard to think of a succinct type of update. It all seems so complicated.

So, I will call this update….

Random Thoughts and Events of the last 5 weeks.

Random Thought #1
Dreams
I had a dream last night. One of those marathon dreams that seem to go on forever.
In it, I was in a doctor’s office being diagnosed with skin cancer. The bad kind.
My leg had these horrible lesions on it, and the very young female doctor was looking at me with such sympathy, telling me surgery would have to be immediate.
And as she talked, I started thinking about dying and what was left unfinished. I thought about the books I haven’t read, and the DVD’s I haven’t even opened, much less watched.
I wondered what it would feel like to die.
I wondered if I was scared.

I looked at the doctor, and I thought, “She doesn’t know there are worse things than dying.”

I said to her, “I am not sure I want to be as aggressive in treating this. I can’t beat this, I know I will die from it. I just want enough time to clear up my unfinished business.”
She looked at me in horror and said, “Let’s talk after the bone scan.”
So, what does this dream mean?
To me, it said several things very clearly

1. I HAVE to stop ordering books and DVD’s that I don’t have time to read/watch from Amazon. It is clearly stressing me.

2. Eating a bag of candy corn at 2:00 am isn’t a good idea, even if you can’t sleep and want something to munch on while watching that creepy movie “Premonition”.

3. There are worse things than dying.

Random Thought #2

This is a difficult time of year for me. Fall. I used to love it. Now it is such a bittersweet time. As the first subtle changes of weather occur, it brings me back to Haley’s last weeks, and to her death.
Fall brought me her birth, and then her death.
Just 11 years and 11 months apart.
I find the leaves changing so beautiful, and yet, unbearably sad. And the rain today reminds me of tears. As if the sky is crying with me.

Random Thought #3

I am doing this Bible Study on Fear. Although I have missed the first two actual meetings, I am doing the book. And I have found it to be some of the most thought provoking and painful stuff I have studied in a long time.
It has made me examine my fears.

I think most people hide their fears, don’t think about them at all, until they are confronted with their very worst fears, and they realize….”Hey, I am not afraid of spiders, like I have been saying for years, I am afraid my child could die. I am afraid I might die. I am afraid the atheists could be right. I am afraid that my whole family could die, and leave me here alone.”

Those are the fears that rock our foundations, the ones we don’t want to face. Who wants to think about that stuff? I don’t.
But only if it is faced and examined, can we begin to deal with it.
I don’t pretend to know whether it is better to deal with our darkest fears, or to just leave them alone, buried in those dark places we ignore.

Random Thought #4
I am unable to tear my eyes away from the train wreck that is “Big Brother House 8” It seems to be the ultimate combination of almost everything wrong in this world, with one or two “good folks” thrown in for good measure.

#5
Not a random thought, but a life-changing event.
Guatemala has changed its adoption laws. They are patterning their program after China’s.
Which means fewer children leaving and longer wait times.
Bruce and I have decided we are too old to wait two years to adopt. We still have a completed homestudy, and we may look into foster care.

We are, of course, very sad to be losing our little Meadow, and we ask you all to pray that she, whoever she is, finds a loving home.

Random Thought #6

I was picking Kendall up at David’s house last week, and happened to mention I was going to the grocery store. David's mom said there is usually a good update story in my shopping, and she would be looking forward to reading it. Well, as usual, it was an eventful trip, and she was right…there is always a story.

This was my first foray out of the house since my surgery. My plan was to take Kendall and Logan with me to Walmart, where Nick would meet us in his own car. We would stock up, Nick would take the first load (and Kendall) home while Logan and I drove to Food City. Then Nick would meet us back at Food City to help with the event we like to call “mega-grocery shopping.

So, all went smoothly at Walmart, if you don’t count the snide remark from the cashier about the vast quantity of dog bones we were purchasing. She had the audacity to ask if we owned a kennel, or if our dog “had a problem”.
Stupid girl.
Clearly the dog owner is the one with the problem.

We filled up three carts at Walmart ans sent Nick on his way.
Now on to Food City….
The shopping itself is a bit of a blur, but the checkout was a nightmare.
Three carts again, and bag boys from Hell. The whole time they are pretty much complaining about how much food I bought. Hmmm. Am I asking you to do this for free? Isn’t this your job? Stupid boys.
So then the boys start talking to Nick.
Boy #1: “I’ll bet you wouldn’t be here if you could drive.”

Nick: “I can drive.”

Boy #1: “You should be out with your friends.”

Nick: “uh..I’m helping my mom.”

Boy#2 “That’s right. Stay in good with your mom. Cuz the first time you are in jail and you call your friends, they’ll say they don’t have any money. Your mom will bail you out.”

Nick: laughs..”but then I’d have to face her.”

Boy #2 “Better her than a cell mate named bubba.”

I try to end this conversation by saying loudly, “How about we just don’t do anything to get put in jail in the first place!”

Both bag boys look at me blankly, I don’t think that had occurred to them.

So now, my three carts of groceries are bagged, and I slide my trusty visa/debit card and it is…….declined.
WHAT!!!!!!!!!!
I had no other way to pay. I knew there was plenty of money in my account, I had just used the card at Walmart. I mean, COME ON!!!!!

Well, to make an agonizingly embarrassing story short, after much groveling and name dropping, and showing her our personal check that my husband is a doctor, and promising on my boys lives that there was money in that account, she took my check.
It may have had something to do with not wanting to put $650.00 worth of groceries back on the shelves!
I immediately checked, and there was plenty of money in the account. I really hate technology.
Remember the good old days, when you just wrote somebody a check, and they rolled the dice whether it would bounce, and you had three days or so to actually find the money to cover the check?
So, Kris….that one was for you.

Please come back and visit. I know I’ve been bad. I’ll try harder!

Peace and Blessings,
Cheryl

Tuesday, August 28, 2007 4:51 PM CDT

Hello my friends!!

I am feeling much better. I had an update all ready that I had written last week in the throes of terrible pain, but it was lost in cyber space, and now the moment is gone.

I really want to thank Lisa for the update on the kids. I enjoyed reading it myself !

Of course, Haley’s words made me cry. I have so many of her words just everywhere, but for the most part, I avoid reading them. It is still so painful. I just miss her so very much.

I want to touch on something I have talked about here before, but it apparently can never be said too much.
Parents who have lost children are sad. That makes other people uncomfortable. But, please remember it is not our responsibility to make you feel better or more comfortable. To be sad, to be grieving our children is normal, and no one has any right to make us feel bad about expressing those feelings. If you come into regular contact with people who grieve, then you should educate yourself about the grief process.

If we feel that we cannot go certain places, be part of certain groups, because our grief may “show”, we would never be able to be a part of anything. We don’t know when we will burst into tears, or if it will be laughter instead. As fellow members of the human race, you should let us know that we are safe, that you understand, and if we cry, you will pass the Kleenex.
You don’t have to make it all better. You CAN’T make it all better. Just don’t make it worse. Don’t shut us out. Don’t make us feel bad because of our tears.

Please know we are doing the best we can.

I hope to share some surgery stories with you all soon!!

Love to you all,
Cheryl

Tuesday, August 21, 2007 4:22 PM CDT

Hey everyone! Lisa here (Aiden's mom)... cheryl actually ASKED me to update. (after the last one I wasn't so sure,) but she asked me to update you all because she is NOT up to well.. being UP. She has had a terrible time with recovering from her surgery. Bruce removed to drains yesterday from the procedure, and in Cheryl fashion she has had some drug interaction issues. (Nothing like a little halucinating!) So needless to say she asked me to update.

She actually gave me an assingment, like a check list of things she wanted me to convey. So here it goes: (I actually took notes!)And who else can brag on her kids better than me?? School has started and the kids are doing awesome. They are just changing and growing so much.

Nick plays on the band at their highschool.

I always tell cheryl to do more bragging about how awesome this band is. It is actually the LARGEST marching band in the state of TN. INCLUDING COLLEGES! Nick was thrilled because he made it onto the competition band, which is really tough to do. Cheryl also said that for some reason Nick has decided to "get serious" with school. He is staying late doing a chemistry study group, and even looking at 'going away' to college. I know this is exciting for Cheryl. Nick is SO smart, and it is great to see him applying himself.

So onto Logan.

Can anyone say.. FOOTBALL STAR? Ok.. as Cheryl's friend I can attest that football wasn't one of those sports that thrilled her. You know watching her baby get all beat up wasn't her idea of a good time. But he loves it. The coach says he is the fastest lineman on the team and that he is really good. I think he is just so happy to have found this niche. Logan is such a sweet kid, I can just see him in highschool.. that big teddybear guy that all the kids love.

And there is Kendall.

(ok I love this photo, I took it while we were visiting and just thought it was so sweet)

Back to school, she is making all 100's on her tests so far, and she is riding the school bus to and from school. She is making friends on the bus, some of the sweet little girls that live on their street. A few girls that Kendall played basketball with. I know Cheryl is so happy to see Kendall come out of her little shell more. AND of course even happier that she is dressing in less spiderman and more girlie clothes. (but that is just between me and you)

Cheryl has volunteered to be the "first-aide" mom at the football games and some of the band competitions. Being a nurse she said she would rather get the kids with the injuries than be barfed on (her exact words) as the vounteer school nurse mom. I don't blame her there. I know also Cheryl is going to be volunteering to help in Kendall's class room this year as well.

The foundation just had their second annual golf tournament. From what I gathered it did really good. There wasn't a huge amount of people but I know 2000 were raised to help fund local children through the foundation. I know that the park that is specifically made to be 100andicap accessable will be sporting a beautiful pinic table or bench with Haley's name on it, as well as other aspects. But in Cheryl's home town they are building a new children's hostpital, and I know that the foundation will be helping with some of the things there as well. Of course all still in honor and memory of Haley and her amazing life.

Ok so speaking of... Have you got a CD? These CD's are amazing! They are also a great fundraisor for the foundation. The cd's are only $10.00 each $2 shipping. Please email Cheryl at BandCvincent@aol.com if you would like a CD. Also if anyone knows how to set up a paypal account please also make a note in the guestbook so we can be in contact with you.

Lastly, I just wanted to share something that Haley wrote to me a few years ago. She actually didn't write it to me, but rather to Aiden. My son. He was 2 years old then and she loved Aiden so much. One time when she came to visit him in the hospital she gave him her E-yor stuffed animal. I just saw how compassionate she was. I still have that sweet toy and just look at it and think of how Jesus loved the little Children and even used them as examples on who was to go to Heaven. Haley was so precious, and of course hilarious. So here is something she wrote to Aiden. I loved it I hope you do too:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

2 year olds are the coolest because. . .

People are always stopping on the street to go ga-ga over how cute they are. I mean, yeah, so what if older kids have hair and the ability to fix themselves a pb& j? Its not THAT cool! 2 year olds can FINGER PAINT without getting embarrased!!!! HA! Take that you older kids!!!

So, like I was saying, 2 year olds are cooler, smarter, and get better presents when relatives come to town. But, there is one downside. Why do the adults always have talk in those weido voices? I mean what ever happened to "Aiden, do you want some juice?" I mean, WHY does it have to be "WHO WANTS SOME JUICY WUICY POO!?"

Well, I think I made my point. This is the end of the presentation. Thank you for cooperating.

By: Haley Vincent, future American Idol superstar.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Love you supergirl and miss you everyday.

Lisa

Friday, August 10, 2007 12:58 AM CDT

Hello to my very patient friends!

I have alot to tell you.

First, I need to share with you all my experience with a rare and unusual phenomenon. It only happens when the planets are in perfect alignment, when record breaking heat waves are occuring all over the country, and I was lucky to be able to witmess it from the actual epicenter of the event.

I am, of course, referring to.....

the-tax-free-back-to-school-shopping-at-Walmart-the-Friday-before-school-starts.

I would hold up the experience to most any natural disaster.

It was all there...the chaos, the shopping cart gridlock, the screaming children, the equally shrill screams of the parents..... It makes me cringe to remember it.

And can I just say to the moms, who stood in front of the notebooks, blocking everybody with their carts, thumbing through evey single spiral notebook, trying to find the one "yellow" one for your kid....can I just say, 'GET A GRIP!!"..or if you can't get a grip, at least get your cart out of the way!! It's just a notebook...let spoiled Sally have a red, or a green, or a blue one. Did you see any of those other colors? There were about six thousand of them. Remember me? I was the one who threw my kid under your cart, yelling, "Pick six! You have ten seconds"

I would GLADLY pay sales tax to avoid that mob scene. In fact, next year, let's have a double-tax day. I'll come for that if everyone else stays home.

Anyway, on Kendall's school supply sheet, in huge bold letters was... "NO TRAPPER KEEPERS!!!"

My question is, what the heck is a Trapper Keeper, and what is so bad about it?
I became absolutely paranoid at the store, checking each item for labels, and fine print. "Was THIS a Trapper Keeper? How will I know one if I see it? Why do they make them if the teachers hate them so much? And most importantly, what IS it??

Two hours later, with exactly $132.00 worth of shorts, shirts, and school supplies (saving me a whopping $12.00) I was finally making my way back to my car, parked at least several miles away in that crowded Wal-Mart parking lot when God punished me for my less than friendly attitude. A bag, filled with bottled waters, fell out of my cart, and started rolling everywhere. So, there I was, one hand on Kendall and trying to keep my cart under control, and the other hand trying to catch rolling bottles. I am sure I looked ridiculous, but I found every bottle, and somehow got Kendall safely into the car. Not without breaking a sweat though. :)

Walmart was only the beginning...I still had to get Logan to football practuce (Yes, I said football) help my mom finish moving, and be at the high school to watch the parent performance by the band (Nick plays trumpet in the marching band). It was a long day!! But, the band was fantastic, as usual.

And speaking of Logan and football, I have never seen such bruising from a sport!! His forearms are completely black and blue, with abrasions, and even teeth marks!! I am horrified by the whole thing, but also clearly outnumbered by the boys in my house.

Kendall is doing great with school so far. I was leery about having her ride the bus, but it drops off and picks up right in front of our house, and is very quick. I could not get her there or home any faster if I drove her. And there are a couple of girls from our neighborhood who ride it, so I hope she will make friends. It is all pretty new and exhausting for her, but I think she will do fine.

Monday, I am having surgery. I am having scar revisions, of my Csection scars, and abdominal muscle repair. I am hoping it will make me more comfortable in my clothes, and able to move around better...not to mention a tad skinnier :) I am hoping for not too much pain, but am prepared for anything. Bruce is taking off Monday and Tuesday to help. Of course this is the same man who made me quit taking ANY pain medicine 24 hours my last C section because he thought I was drugging the baby. I'm not expecting a ton of sympathy. :)

Until next time....

Cheryl

Thursday, August 2, 2007 12:43 AM CDT

It was hot yesterday. And I mean really hot. Not just Cheryl-is-probably-premenopausal-and-would-be-complainig-of-heat-in-Alaska.
It was the kind of hot that everybody felt. Kendall and I visited our playground, and stayed two hours.
Until she was literally begging me to take her home! Did I mention it was hot?

So, let me tell you about this playground. We are SO blessed to have this place in our community. It is called "Darryl's Dream, and every
station is accessible for ALL children. It is huge.
I can't really even describe it, I should take some pictures and post them. (Oh, wait...this might be a good time to confess that my friend Lisa posts all my pictures, music, borders, backgrounds..well...pretty much everything except the journal updates, and she occasionally will do that for me too! Thank you Lisa!) As I was saying, I should take some pictures and have Lisa post them!

Around the playground (built on a state park) are hiking trails with stations. Each station tells part of the C.S. Lewis novel, "The Lion, The Witch, and The Wardrobe" which is, of course about Heaven. So, it seemed appropriate that our Foundation should support this project. We are going to sponser a station after the golf tournament.
We are also sponsoring a bench there for Haley, just from our family, so if you live here locally, be looking for her bench.

Also, if you live here locally, think about attending, and playing in our golf tournament. We need players. It is $100.00 per person, and all proceeds will go to The HVF. Spread the word!!

I have to say thank you again for all the support regarding Meadow. You all being so positive gives me the confidence to think.."Hey, maybe I CAN really do this" (Believe me, I have spent some time in the fetal position, sucking my thumb, wondering WHAT IN THE WORLD were we thinking!!!)
But, I know that this is something God wants us to do. It isn't about me. It is about this child who would otherwise grow up in an orphanage...or worse. And anytime I think of that, all my worries melt away, and I am ready to go rescue that child!

It's funny, I haven't even met her, yet she's already in my heart.

I wish I could say the same about my three, incredibly self centered, children. They had to write letters for the social worker, and the best they could do was, "We don't want to change any diapers." Thanks kids. God will bless that. Sheesh.

Kendall is definitely a bit jealous. She looked in the closet the other day, and said, quite snobbily, "You bought HER a bathrobe? I don't have a bathrobe!" CALL SOCIAL SERVICES!!! Kendal doesn't have a bathrobe!!!
I just stared at her, I could hardly even wrap my mind around that one. And then I did the predictable parent thing, and told her about "All the sacrifices we've made for you young lady, and I don't think someone with cable TV AND a computer in their room needs to be whining about a bathrobe!"

In other news....

So.......school starts Monday! I am not ready at all. I don't even have the school supply list.
My mom still can't drive, which is completely cramping my style, I used to depend on her for so much...and she can't drive until late September.

I am having my surgery (post-poned because of my mother's fall) on August 13th.

And, of course, the Golf Tournament August 20th at Ridgefields Country Club. If you want to work it, or attend it, please email or call me!!

It goes without saying that I miss Haley every second of every day. When we left the park yesterday, two solid white butterflies followed us to the car. I have never seen a white butterfly. They were so pretty, and, of course, I thought of Haley.

Thanks for coming by,
Cheryl

Sunday, July 29, 2007 8:38 PM CDT
Hello friends,

First the good news.... If you like a bit disturbing, yet totally hilarious cartoon nudity, go see The Simpsons movie. I went over protest, as I find the TV series to be regularly offensive, but I was laughing out loud.

Now the bad news....I broke a tooth. Crap. Right on the heels from the abcessed tooth from you-know-where. Good grief. Am I too young for dentures?

So, how am I? Having mood swings. Happy to heartboken in two seconds. I am very unstable. Me and Lindsay Lohan. But at least I am not kidnapping and running over people. My moods only affect the ones who love me. Lucky them.

But, I still don't want to talk about it. You know, the elephant in the room...and in my head. I am in "avoidance" mode.

One day soon................

Oh, and HUGE thank you's for all the good wishes about our new little girl. I am glad you like her name!! :)

Thursday, July 26, 2007 12:12 AM CDT

I'm BAAACKKKKK!!!!!!!!!!!!!

Craziness abounds.

The bottom line is a crashed computer and an abcessed wisdom tooth nearly put me over the edge.

The last few weeks have been a blur of Percocet and tech support.

But, anyway here I am.

I need to say thank you to all you "faithful" who just wait patiently for me to get my act together. (Don't misunderstand, my act is never completely together). So, thank you for that.

And Lisa, your words touched my heart as you know. And every word you wrote is so true. I will never be okay ever again. Somedays I just choose to not talk about it. But, it doesn't hurt any less, just because I don't say it out loud.

I have so many stories of life in our household....never a dull moment....but, that will be for another time.
Today I am letting you all out of suspense (like you were holding your breaths...oh, my Ego!) about our surprise.

It is a bit early to announce, because so much can ahange, but as of today....

We are adopting a little girl from Guatemala!!!

Our homestudy is done, and apparently there are lots of kids waiting for homes. :( So, we just have to wade through the paperwork of two countries.

We have no information. All we know is it is a girl, and her name is Meadow.

If you don't like her name, I don't want to know. I love it, it reminds me of Heaven.
But, my kids don't like it at all.....so, I tell them it's a good thing our home is a dictatorship, rather than a democracy. We just decide for everyone. In fact, Bruce and I....we are "The Deciders".
Just like the President!! Oh my gosh...maybe we are a democracy...hmmmm....tha't confusing....America is a democracy, right?
One person, One Vote...and all that good sounding stuff....but....if that were true, Al Gore would be president...and we would all be saving rainforests instead of invading countries. Or....who knows? I am glad I am only "The Decider" for this one family.

But, I am seriously digressing....

The other news is I am going back to school. Nearly all of my classes will be online, and with my nursing degree, I can be a grief counselor in one year. Pf cours, that is going fulltime, which I won;t do..so maybe a bit longer.
Like everything, God's timing, God's plan...I am just along for the ride.

And what a ride it has been.

Okay, more later....I promise!!

Love you guys,
Cheryl
________________________________________________________________________
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Saturday, July 14, 2007 6:02 PM CDT

Hello everyone! This is Lisa, ( Aiden and Mason's mom ) I was just so sick of looking at that nanny 911 update that I thought I would just update for her.. No the real reason is I think I have probably run off all "my readers" so I thought I would chat with a different crowd. OK OK.. the REAL reason is.. Cheryl's computer is on the fritz and we were on the phone feeling frisky so we thought it would be a good idea if I updated. So Hello... (and the readers hit the close button and "x" out of the screen)

You know Cheryl and I talk a lot. Before Haley passed away Cheryl and I spoke on the phone everyday, and some days for four hours. A friendship that started based on sick kids. Seems kind of weird, but let me tell you, it is a different kind of friendship. A different kind of love and respect. To fight along side one another for each other's children...well lets just say it is rather special. You can see evidence of that from all over Caringbridge. Angel Taylor who just flew to Heaven was laid to rest next to another child whom they met and bonded with that had passed from cancer, as well as another friend of theirs. They fought together and then now grieve together.

So back to me and Cheryl...SO through the years that we have been friends it has been about our fight together for our kids, but SO much more that that. There are days when we never talked about the kids just girl talk.. friends. BUt then there was a time when phone calls from friends were in the middle of the night. They followed disasters and emergencies. There were the days were one of us would sob on the phone and the other would console... all until Oct 1 2005. I don't think I have posted here on this site since then. Maybe a few times about the memorial service... but posting about Haley's passing was the worst thing I have ever done.. well second to answering the phone when I heard my best friend, the woman who I have fought along side of for years with, tell me that Haley lost her battle.

Haley was so sick. It wasn't always on this site cause Haley loved to come here and read what people wrote to her. So Cheryl had to be careful about how she shared her feelings. Cheryl never really talked about how Haley needed to wear rollerskates through the house cause the pain in her feet was so intense. The rashes from the lupus... at times sweet Haley had red rashes that I know must of burned and itched. Her skin cracked and blistered on her lips and hands. She had fevers every day. For months with no relief! Soaking Haley in cold baths to get fevers down from her lupus and liver disease was a daily thing sometimes. When she was admitted to the hospital, she didn't go to the floor she was in the ICU. Time and time again she pulled out of life threatening situations. Times where they had tubes in her chest to pull fluid off her heart. When her ammonia was in the 200's and she was encephlopatic. Of course the time where Cheryl knew a headache wasn't a headache.. it was a spontanous bleed in her brain. Haley was sick. And who would have known it? Her death SHOCKED us.. I think that was because she just kept going. She kept singing. She kept smiling and making us laugh. How could someone SO alive.. leave? But it happened.

SO here we are, almost 2 years after Haley has left us, and Cheryl and I talk almost every day.. often times for hours. There are times we laugh our heads off and many times (MANY) we cry. People ask me all the time... "HOW IS CHERYL?" or "I read her site and I am so worried".... So here it is the real scoop... She is doing her best... she is sad. She misses Haley. She has terrible days and she has good days. It is a new life... it is different than before and will never be the same.... but I will tell you there are days where she goes to her son's school dances and dances like a fool just to embarress him. There are phone calls that I can hear Bruce and the kids laughing so hard that Cheryl has to leave the room just to talk to me. Friday night family night. What family does that EVERY FRIDAY? And means it? I tell Cheryl that even on her worst day... she is a better mother than so many people out there.

SO why am I telling you all this? Why have I hijacked cheryls site? (Is anyone still reading this) I guess to just let you know keep hanging in there... if you know someone who has lost a child, someone who is hurting, that is not the time to walk away. Dont be that person that says, "I can't take how sad this is" Be that encourager to them. Listen to their pain, After all isn't that what Jesus would want us to do? ("weep when they weep, mourn when they mourn") I know Cheryl is so thankful for her friends who come here. With your notes of love and encouragment. Or even from the other angel families, your notes of empathy... it has made all the difference.

So as a reward for your faithful reading... I have a big fat teaser for you (and this was directly from cheryl).. Cheryl has been indicating that they have some exciting plans coming up.. and guess what?? I know what it is!! And it is so wonderful.. so stay tuned!!! Cheryl will get her computer up and running asap and maybe spill the beans in the next week!!

Hugs your kids today, and let me end on a quote from Cheryl's Journal History (read it if you haven't; you will be so blessed)

This is from one year before Haley passed away. Often times Cheryl will say to me how much she has changed since Haley passed away. It is true. Things have changed, but THANK GOD.. Praise GOD... that this one thing, this one amazing thing has not changed... and that is her faith. :

"Oct 2004
Haley is about the same. I have looked through my last few entries and noticed how little I have really said about her. Truthfully, sometimes it is just hard to talk (write) about how hard and how scary this time is for us. Last week we received some paperwork from her hepatologist in Atlanta. No doctor in the world knows her better. He listed her prognosis as "guarded". It really depressed me. I want her prognosis to be "good"¨, and her life expectancy to be the same as mine! I know there are many who have it much worse than us, and most of the time I can really live day to day. But some days are definitely harder than others. I just have to remind myself that only God knows how long we are here, and what His plan is for her life. My hope has to be in Him, not in medicine."

Cheryl... keep placing your Hopes in Him. I am so proud of you for what you have done with the foundation, what you do to honor Haley. I love you my sweet friend... and thanks for letting me update. XOXO

Lisa

Sunday, July 1, 2007 10:58 AM CDT

I had a bit of a meltdown last night.

We are redecorating the kids rooms, and projects lead to messes. And if you happen to live with the four sloppiest people on the planet, things can get a bit out of control.

And after waking up to soda bottles, food wrappers, dirty clothes all over, tripping over shoes….well, I snapped.

And I have to say, it got my kids attention.
They are so used to the patient mom who picks up after them without complaining. But NO MORE!!
I “Nanny 911’d” them with my own set of written house rules.

They were so stunned. They just sat there with their mouths hanging open.

Here are the written rules I gave them.

1.Eating and drinking at kitchen table only. NO EXCEPTIONS!

2. Make beds every morning BEFORE breakfast, and BEFORE a TV set is turned on.

3.If I trip over shoes, I am throwing them away. You will rterplace them with your own money.

4. Rooms must be picked up by 8PM. NO EXCEPTIONS!

5.Nick – Your laundry day is Saturday. Washed, dried, folded, put away by 8PM.

6. Logan – Your laundry day is Sunday. Washed, dried, folded, put away by 8PM

7. Dirty clothes on the floor will be thrown away. You will replace then with your own money.

8. Nick- Mow the lawn each weekend.

9. Logan – Pick up perimeter of house each weekend.

10. Kendall- Sweep deck and back porch each weekend.

11. Weekend chores will be finished by 8PM

12. Kendall –Feed and water dogs each day.

13. When asked to do something ------DO IT.

14. Do not talk back.

15. Do not tell me someone else made the mess.

16. Do not tell me it is someone else’s turn or it is not your job. Assume that I have all the information about what I have asked you to do, and just DO IT!

17. Loading and unloading the dishwasher will be assigned at my discretion. Do NOT tell me who did it last times. If I ask you to do it – DO IT!

18. Allowances will be given Sundays at 8PM. If you have not followed these rules, appropriate deductions will be made.

I do not think the above is too much to ask of a 16, 12, and 8 year old.

On a funnier note, after the meeting I asked,

Me: “Any questions?”

Kendall: “How are babies born.”

Me: (feeling very no nonsense) “They come out your little girl parts.”

Kendall: “That is disgusting. You should have never told me that story!”

I think she thinks I’m making it up.

The kids got up this morning for church….and made their beds. I think I scared them a bit.

Anyway, back to the grind…I will post a picture of Kendall’s room when we are done. It is decorated like a camp ground. A compromise for a tomboy who would have loved dinosaurs, and a mom who was thinking princesses! It really is cute though.

Have a great week.

Cheryl

PS To order CD’s look in journal history. I will post info on this page next week again.

The Golf Tournament is August 20th. That is a firm date. Please come if you can. You can email me (bottom of the page) to register or to get more information

Sunday, June 24, 2007 8:04 PM CDT

Isn’t it funny how we think we have control over our lives? Even as a Christian, I have spent my life living under that delusion.
But, I have had, in the last few years, an epiphany. :)

We have free will, but we are most definitely NOT in control.

We fool ourselves by thinking we are. It FEELS like we are. I mean, we make thousands of decisions….Do we buy this car, sell our house, change jobs, marry this person…..do we go to church today, brush our teeth, exercise, do we watch football or baseball,…

You get the idea.

For all of those actions, there is a reaction….possibly a good or bad outcome, based solely on that particular decision. But, that is NOT control.

I learned this the hard way. I continue to learn it the hard way.

There was a time when I thought if I could just find the best doctor, the best hospital, the right treatment, if I could manipulate the environment enough to keep germs away, if I just prayed hard enough, that I could keep my child safe.
I thought God would see how right I was, that He would substitute His judgment for my own. I thought I could, if I tried hard enough, control the outcome of Haley’s illness.

I put enormous guilt and pressure on myself. I felt like I was the ONLY one who could fight this, the only one who could change the course we were on.

I didn’t even trust God.
I knew His will could very well be different from my own. So, I refused to even entertain that idea.

I was in control of the situation. I had it all under control. I was organized, and efficient. I was strong and mostly unshakable. I was always in “crisis mode”.

And then, in an instant, I lost control. At least that is how it felt. The truth is, I never had it to begin with. It wasn’t mine to lose.

Even after Haley died, I fought for control. My mind raged against itself. I tortured myself with trying to make it not true.
I had, and still have, recurring dreams where Haley escaped death and we have one more chance, and I am pleading with the doctors to transplant her, to give her a chance.
Then I wake up, and remember that there are no more chances left. It is already too late.

And I have tortured myself with the “If only’s…”. If only I had done this one thing, made this different decision, went to this hospital…..

But, the thing is, it doesn’t matter. Haley still would have died. She lived, and she died right where she was supposed to, in the center of God’s will.

Not having control is different from not having choices. We made plenty of choices. Some were good, some not so good. Good or bad, they were ours, and we lived, and still live, with the very real consequences.

I live a very different life now. One that is filled with choices. But, one where I hand over the true control to our Lord. I am, gladly, in His hands.

What remains of my life, and what I do with it lies somewhere in between my own free will and God’s ultimate control.

All I can do is try to listen to Him, figure out what He wants me to do, and do it. It makes everything so much easier to live in agreement and obedience.

I just wish I could teach everyone that, without him or her having to learn the hard way.

And speaking of obedience, God has an interesting and exciting plan in our future, that I am not quite ready to reveal….you’ll just have to stay tuned.

In other news….
My mom continues to heal. She is at a rehab hospital, and will be there a week to ten days, and then she will stay with us for a while. No driving for three months! But, she is doing great. Thanks to all who have visited, called, sent flowers, etc….she has been surprised at all the attention!

We had a nice, although much too short, visit with my dad this week. It is always good to see him, and the kids adore when they come to town!

Nick is driving...Yikes!!

And...let's see, oh yeah, my tooth still hurts :)

CD’s are available. I will be doing a mailing about once a week. Just send a check to

The Haley Vincent Foundation
304 Cain Drive
Blountville, TN 37617

The cost is $10.00 each, plus $2.00 if I need to ship them.

Please continue to pray for direction with the Foundation, we have some exciting ideas, but they will require some big fundraising….so please pray.

Remember, our God is a great and mighty God. Stop fighting Him, hand over control, humble yourself before Him, and He will bless you in ways you can only imagine. More importantly, remember this is not the end….the blessings of your life here will carry into, and be multiplied, in the next life….”O Happy Day”…

One day the Master will say,
“Well done, good and faithful servant. You have been faithful over a little; I will set you over much. Enter into the joy of your master.”
Matthew 25:23

Still Believing,

Cheryl

Wednesday, June 20, 2007 10:56 PM CDT

**HALEY’S CD’s ARE HERE AND AVAILABLE FOR PURCHASE**
The are professionally packaged, and cost $10.00 plus $2.00 shipping, if needed.
Shipping is $2.00, no matter how many are purchased.
They include 7 songs, pictures, and all lyrics.

Mail a check to
The Haley Vincent Foundation
304 Cain Drive
Blountville, TN 37617
ALL proceeds benefit The Haley Vincent Foundation
We need and appreciate your support

We ARE looking into adding a paypal link, although we have not quite figured out how to do it...but possibly in the future that will be an option.

A word of advice……..

Listen closely, or read carefully……or whatever…..

Do NOT put off for tomorrow what you can do today.

In other words…procrastinating is bad.

Why? You ask??

Well, let’s just say that for last two weeks you haven’t felt that great. You maybe have had a toothache….or a sore foot….or whatever….just making it up as I go…

It can all wait. The 60 emails, the CD orders (Which I LOVE, Please keep ordering!!), calling the cable man (who needs that extra TV), laundry (It is summer, we can recycle clothes..and we can always where bathing suits when the underwear runs out), dishes (Pizza and paper plates!), even housecleaning for your guests coming on Friday, (That is a whole day and a half away.
.PLUS it’s just my dad…..he, hopefully doesn’t expect too much),
the post office runs, the bank, Nicks’ cookout at our home Friday night for his 16th birthday
(why shop ahead and just store all that stuff…You’ll have all day Friday, remember.?.....Mom is picking up Kendall and Logan for laser venture, meanwhile you will be cooking like a fiend, and when all the kids get home, it will ALL be done. You have 3 days to do all of this.

Plenty of time, don’t be silly. Until the phone call comes.

And I have learned an important life lesson I will now share with you.

I always though we shouldn’t procrastinate because of things like, not getting the best job done, because it is rushed, or the stress of always having a pile of bills. (Good grief, did I mention the PILE of bills that may need to be paid because you have been too lazy to do even that!) Nope, the reason is because the phone call.

My phone call came at 4:00 PM, just as I was about to start dinner.

Hero Jane: “Cheryl, Is Bruce home?)

ME: “Can I have him call you?”

Hero Jane: (Long pause) “Okay, don’t panic, your mom fell”

ME: (Not panicking, because I don’t panic) “Is she okay?”

Hero Jane “ I wasn’t sure what to do. Her knee looks bad, and I was afraid to move her, so I have called 911, EMS is taking her to Indian Path.”

I have to stop here in my story to give major kudos to Hero Jane, who did exactly the right thing, both in calling the ambulance and calling me. And she was Sweet Jane as she stayed for several hours, keeping me company in a place that is extremely difficult for me….the hospital.

Thirty minutes later, I walk into the ER room, and say, tactfully of course, since tact is my strong suit. “You look like someone hit you with a car!!”

Not only did she look horrible, but also she had some of the worst denial I’ve ever seen.

For example, she thought she was bruised and was going home later…said she was “fine” and didn’t even need me to stay.
She also called and told her helpers that she couldn’t cook today for “The Kitchen of Hope”, but maybe tomorrow.

Let me tell you how she looked.
A long nasty scratch up her hose. Her right arm was swollen, and she was unable to move it. But…the beautiful thing was the knee…I have never seen it’s equal. It was swollen horribly, and a bit….off center.

I asked what hurt the worst. She said her arm did. I looked at that knee and offered her a chance to change her answer, but I think she just hurt all over!

Then the X-rays come back. Her kneecap was “shattered” as the doctor put it. Her elbow was broken also, but the knee needed surgery.

And, apparently, it needed surgery RIGHT NOW!!!!

It was impressive once the orthopedic surgeon (who is an amazing Christian man Bruce knows well.) arrived. She was in surgery about an hour after he saw her. In good hands.

I stayed until she was heading to her room for the night, and will return in the morning.

I should NOT have procrastinated. Now, I still have to do all that stuff, plus the stuff my mom does for me each week (which is A LOT), and take care of her, as she will be out of commission for around three months.

I will be learning the hard way exactly how much I need my mom, how much she does for me, AND not to procrastinate.

Believing,
Cheryl

Philippians 2:14

Thursday, June 14, 2007 11:09 AM CDT

Random Thoughts

1. Remember the game “Operation”? I played a version of that game the other day with Kendall, and nearly lost my mind. Can anyone actually take out those little pieces? Do we need games that point out how badly our hands shake? AND, I was a nervous wreck, waiting for that buzzer….you would have thought it delivered an electric charge to my body, the way I cringed trying not to touch the sides. The most stressful board game ever created.

2. Who needs a root canal in a wisdom tooth?? Me. Of course. The one tooth that has six nerves or something…AND they won’t promise I won’t lose it anyway. I am thinking pull it out, implant later….but NO….my sadistic dentist wants me to “try” and save it. Of course, the root canal guru isn’t available until the end of July, and my tooth hurts NOW. I may be calling an oral surgeon today…I am SO over this toothache.

3. Proof I am raising the laziest children ever.

Logan: “If I can’t find the remote control, I just sit close enough to change the channels with my toes.”

Me: “Uhh, that’s a little disturbing.”

Kendall : “EVERYBODY does that.”

Huh? They do? I LOOK for the remote control for at least ten minutes before I whip off my shoes and use my toes.

4. Paris Hilton. I, in odds to everyone else on the planet, feel sorry for this girl. She has never had any adversity in life, and has NO coping skills. Me, for instance, I could do 45 days in jail, and that would be like the 5th worst thing that has happened to me.
And even as she declares her desire to change her life and how she lives it, her father announces his idea of a “jail-springing” party in Las Vegas. Just the city for a girl who claims to be trying to find God. Is he undermining her??

5. Scooter Libby. Nope. Don’t feel sorry for him.

6. The View. I used to like this show. Rosie was, obviously, a nut job, but what about that Joy? She seems like the meanest woman on the planet. I can’t watch anymore because of her.

7. Nick gets his driver license on Monday. Scary stuff. We did buy a parent-chaperone phone, which will tell me where he is, and more importantly, how FAST he is traveling. I will probably be tied to my laptop tracking him for a while. I do trust him, but not with something as important as his life.

8. The Sopranos. I am not a fan of the show. I did watch a season, but the language and the violence were just too intense for me. We did, however, watch the finale, just because of the hype. Waste of an hour. I want the author of the script to tell me HIS story, not make up my own. If I wanted my own ending, I’d write my own script.

9. Secret TV pleasures this summer…..”Army Wives”….and even more secret…”One Tree Hill”.

I hope your week is a blessing to you. For all my faithful readers and great friends, your “company” on line gives me great joy. Thank you. And for the CB families who check in here, you are never far from my heart or mind.

“Better is one day in His court, than thousands elsewhere.”

In His Love,
Cheryl

PS OOPS!!
Haley’s CD’s are here!!!!!!!!!!!! They are beautiful. Price is $10.00 plus $2.00 if you need it shipped. ($2.00 total no matter how many you order).
Snap them up quick….we only have a thousand. :)

Friday, June 8, 2007 7:06 PM CDT

My tears tonight are for Rachel’s mom and dad who are spending their first night without their baby girl on Earth.

Please read the last few of their journal entries, as Rachel’s mom has described the angels who paved the way to Heaven for this incredibly special little girl.

Sweet Rachel, dance tonight with your angel friends, and hug Haley for me.

Believing,
Cheryl

Thursday, May 31, 2007 2:06 PM CDT

Before I update, I need to set the scene. We are at beautiful Holden Beach.

The first night here, Bruce and I watched at least 15 dolphins give us a show right from our deck. It was an amazing welcome.

And before that, we were able to visit Becky Smith, along with her husband Steve, and their beautiful kids nathan and Sarah. Please go to their site and see the sweet picture Becky took of our families. If you know the Smith's, you know how truly amazing they are.
We loved meeting them, and hope to visit again next year!

We have had some great times this week…but.

But, today is when I am writing.
And today has not been a good day.

I write this from the family room, with a beautiful view of the beach and ocean. The rest of our crew have gone to enjoy the water slide down the street.

I just got back from a 3 mile walk (Yes, I measured it). I am trying to walk 3 miles 5 days a week before my surgery on July 5th.

For the first half of my walk I thought about how lately I have become blissfully “empty-headed” lately.
Meaning, at times, my head becomes blank…and I am thinking of absolutely nothing.
To understand what a relief that is, I need to explain how it used to be.
For more than a year after Haley died, there was a shouting, a LOUD shouting, every single second of the day……if my mind wasn’t completely distracted by something else, my brain would scream, “SHE’S DEAD! SHE’S GONE! FOREVER!”
And variations on that.

The only real escape was sleep, and there was momentary respite in some kind of complete distraction.
But, for the most part, that voice was relentless, every waking minute.

And then at some point, I realized it has faded, leaving in it’s place, usually unwelcome memories. Some good some bad, always sad. Always.

So, on my walk, all the way to the half way point, I am enjoying, and reflecting on, my empty headedness..

And then the memories come….and I miss her.

I am walking alone, she should be beside me.

My hand is empty, hers should be in it.

I don’t pause to look at shells, there is no one to put them in her bucket.

I chase no one into the waves.

I don’t listen to endless, beautiful chatter.

I walk alone…and I cry.

Because, whether it is being screamed into my head, or whispered into my heart.
She is gone. And I miss her so very, very much.

Thanks for loving us through this,
Cheryl

Thursday, May 17, 2007 1:09 PM CDT

A lot of people have commented on the new pictures.
Yes, I agree they are beautiful. So beautiful, it is difficult for me to even look at them for very long.

But, let’s turn to something mindless and insignificant…….

On the eve of the “Grey’s Anatomy” finale, I have a few things to get off my chest.

Mainly……….what does Meredith Grey have to be SO depressed about????

OK. So, her mom wasn’t all touchy-feely. And her dad left and started a new family. I get that. It wasn’t great. But, come on! They didn’t abuse her. She lived in luxury AND was given a first class education.

Let’s take a peek at Meredith’s life…….

The chief of surgery protects her and acts like a surrogate father.

She is a surgeon in a well respected program.

She has 3 best friends who would do anything for her.

Her boyfriend is a neurosurgeon, gorgeous, a nice guy, and loves her like crazy.

She is young, beautiful, and smart. And healthy.

She gets plenty of rest, for an intern, (judging from all the bedroom scenes with McDreamy)

Can someone please tell me…..WHAT is the problem??? Am I missing something?

I have to say, I much prefer Mc Dreamy’s first wife….(PICK HER, DEREK, PICK HER!!)

So, Meredith, a word of advice……Stop whining! Stop Pouting!

Cheer Up!...Or I am going to change the channel.

Seriously, Meredith. Seriously.

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Cara, our Corgi, is in the doggie hospital. She has been vomiting for two days, so she is getting IV fluids and they are running tests. Hopefully, she can come home tonight. She looked so pitiful.

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Tomorrow is the last day of school, and we leave for the beach on the 25th.
Summer is here!

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John 14:1-3 Let not your heart be troubled: you believe in God, believe also in me. In my Father's house are many mansions: if it were not so, I would have told you. I go to prepare a place for you. And if I go and prepare a place for you, I will come again, and receive you unto myself; that where I am, there you may be also.

Believing,
Cheryl

Monday, May 14, 2007 1:33 PM CDT

Hello my very patient friends!

To reward you for your patience, I will stay silent on the details of the nasty GI bug that kept me from my computer.

I have to comment on the guestbook entries. I LOVED them.

You all have amazing ideas, and I am flattered that so many of you think I should write.

I love all the books, piano, cooking ideas, even the exercise suggestions. :)
And I DO have a Nintendo Wii……actually the kids have it, but I have been known to smack a cyber tennis ball. What is embarrassing is that I consider that exercise.

So, what is happening here? Well….I made the dreaded “Dollywood” trip with Kendall, and my good friend Jennifer, who actually took the day off work, to come with me.

The fun began about 20 minutes away, when Kendall announced, “I need Phenergan.”, and Luke, who apparently took that to heart, promptly threw up on himself. Hmmm….we haven’t even got on the rides yet.

We convinced ourselves that there was just a little car sickness, and we plugged on.

Jennifer, is a Dollywood expert, having been there like, 200 times. She knows every inch of the place, so we followed her lead. I told her I wasn’t riding any “spinning” rides, and she said the only ride she couldn’t do was the carousel.

I really don’t like ANY rides, having a very weak stomach, but I rode a few for Kendall’s sake.

Then we get to the Waterslide. You walk, in line, straight up for a half a mile, then get in a raft, and slide down. I think I can do this.
But, as we are climbing, I realize I have never been on a waterslide.
Never.
And it is really high. And then I saw the rafts. You have handles to hold onto. ONLY handles. No seatbelts. The only thing between you and sliding the slide without the raft are your own fingers.

I am silently praying not to be the first Dollywood fatality, when God intervenes with a Dollywood miracle. The four of us get on the scale, and we are too light to ride!

They need to add two to the raft, so one is left behind. ME!!

As I hiked, happily, back down the trail, a sweet girl asked if I would like to ride with them. I had to laugh…she thought I was disappointed, not completely relieved!
And then I watched Jennifer, Luke (5), Kendall (7), and two complete strangers come speeding down the hill, and knew the truth. I am a big chicken. Baak Baak Baak!!

After a delicious lunch of fried everything, proving to be the good friend I am, I tricked Jennifer into riding the carousel with BOTH kids, while I watched.

By now, we are all tired, and we decide to ride “River Rampage” all together. I joke to Jennifer, while in line, that a 2nd Dollywood miracle is too much to hope for. I WILL be riding the “River Rampage.”

And there we are, the very next to get into the boats, when the man who runs the ride yells out, “We are evacuating. Please leave the building.” I promise. We were NEXT, and we had to EVACUATE!!!
I would have burst out laughing if not for the disappointed faces of our little ones.
But, they were not kidding. They closed the ride…just like that.
We never found out why, although the persistent rumor was a snake in a boat.
You will be proud to know, that as we “evacuated”, I overcame the impulse to shout, “Snake! Snake!” at the people still in the boats, obliviously finishing their rides.

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Changing gears completely, I want to say, I thought of little else yesterday, than those moms who were living through Mother’s day without their children here. You all are on my heart always.

Until next time,
Cheryl

Sunday, May 6, 2007 9:58 AM CDT

As most of you faithful-readers know, one of my main coping mechanisms has been distraction.
Distract the brain from thinking constantly about that which hurts so very much.
It is actually an effective and healthy tool for grieving.

I, however, as I am prone to do, have taken it to an all consuming level.
I find myself panicked at the thought of being alone with my thoughts….without SOMETHING to distract me.

And, of course, the TV is the best way to accomplish that.
The problem is….I think I am not doing myself any favors with the TV I am watching.
“House” for instance this week…dying children….leukemia and sepsis….the line “Do you want to leave here with one dead child or two?” Seriously.
And I watch it, like millions of others, and I am thinking…..THIS is what entertains me? Seriously?
And, Court TV….I have watched many episodes of “Forensic Files”, “American Justcie”, “City Confidential”, “Dominick Dunne”, “Suburban Secrets”….not to mention “Dateline NBC”, and 48 Hours Mystery”. Almost all of these programs highlight kidnappings, murders, and of course, the subsequent apprehension of the bad guys.

I suppose, in small amounts, these shows are fine. But, when I have to find something to have on my TV constantly, I am actually living with these crimes and criminals.

So, I am going to try and solve this in two ways.
First, Find better TV. How about a comedy occasionally? Where are the good ones? Reality Tv is usually pretty good, if you don’t slide down to the “Real World” gutter, which is depressing in a whole other way.
So, that leaves like 3 comedies, 4 reality shows, and that is less than 7 TV hours a week…which would be fine if I was in 2nd grade, but I am home ALL day, and I need more and better choices.

Second, Find different distractions. Hmmm. I have actually been thinking a lot about this. What can I do that requires no energy or motivation?

Let’s start by eliminating the impossible.
Exercise. Hate it. Will never be a hobby for me. Will always be a chore, and I only do it to work out…never for more than 30 minutes a day. Now, the PLUS side is, it IS distracting, I am thinking of how bad I hurt, how hard it is to breathe, and how soon this will be over.

Anything crafty. Crafts make me nervous. Plus, I am really bad at them. I love the beautiful finished product, but I am physically incapable of being creative. I like to pay people to be creative for me. I can’t even scrapbook.

So, I decided to make a list of things I would really want to do if I could do anything. Something I would leave the house for.

1. Be a professional singer. This would require the magical transformation of my vocal chords, of course.
2. Host “Saturday Night Live”. That looks like fun.
3. Be an inspirational public speaker, like Beth Moore.

I have also thought of plastic surgery as a hobby. Getting something nipped or tucked every few months, a couple weeks of painkillers….and then back for more.
This, however, can become quite expensive, and there is the risk of the “Michael Jackson” look. So, probably not practical.

I have tried reading books, with spotty success. It has to grab my attention immediately, and even then, my mind tend to wander. I definitely have traumatic-onset ADD. (I just made that up, it’s not a real thing)

So, what do I do?? I am bored. I am unhappy. I don’t want to leave my house. It is a vicious circle.

I wish I could start LOVING housework and cooking!! Let’s pray for that. That I can find distraction in cleaning! Actually, Bruce has probably been praying for that for years.

I would love to hear your thoughts. Your comments keep me coming back here. ?

Have a great week,
Cheryl

2Corinthians 2:13 (Look it up!)

Tuesday, May 1, 2007 1:25 PM CDT

A friend of mine said to me recently, as we were discussing another friend with a healthy baby, "She is living the life I planned.”
And I said to her, “EVERYONE is living the lives we planned.”
I mean, NO ONE plans to have their child sick.

Our children are all healthy….until they are not.

No one thinks when they find out they are pregnant, that they may not see this child grow up.
It is not the way our brains work. We seem to be optimistic, as a people, by nature.
The “everything will be okay syndrome” or “bad things can’t happen to me.”

I have been wondering about all of this lately. I wonder if God gives us that spirit of hope and optimism, that we seem to be born with, to prepare us for the day, and the place, where nothing bad can ever happen to us.

To think of a place where bad things never happen is almost beyond comprehension.
Almost.

But, I can imagine it. I can imagine, with one step, stepping out of my broken body, into a perfect one, I can imagine the sun on my face, the breeze in my hair, Haley running towards me, and the face of God all around, in everything I can see or touch.

I can’t imagine how it all works exactly, but I know it will make my heart sing.

Besides seeing Jesus (which I really can’t imagine), and seeing Haley, I want to meet her family. The mom who stepped in to parent her for me.

The one who is tucking her into bed, and who’s heart is so very full of love for my baby.
Is she someone I once knew? Or just someone God chose?
Because I know she has a family there. Her house is full of brothers and sisters, love and laughter. Sometimes I think she has some of our CB and liver friends with her.

The Bible says there is a season for all things. I feel that the seasons of my life are changing again….I am not sure to what or why. I just trust that God is with me, and if I make all decisions seeking His counsel, I cannot fail.

Seeking,
Cheryl

Sunday, April 22, 2007 8:22 PM CDT

I have been meaning to write an update for several days, but for some reason, couldn’t seem to muster the energy.
It has been such a tough few weeks, between the VA Tech shootings, a lot of our CB kids struggling, and worrying about little Mason on top of it all.
It is emotionally exhausting, and I just want to hide away sometimes.

But, instead of hiding, I am going to share some funny “kid” (and possibly their parents) stories…to remind us there is laughter in this world despite our pain. And to remind us just how precious our little ones are.

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LOGAN

So, the other night at dinner, I gave my kids a big lecture on being nicer to people, more sensitive, (I know…MORE sensitive than a 15 and 12 year old already are?!), a little more polite. Then the conversation went like this:

Logan: “I want to play football next year”

Mom: “WHY??????”

Logan: “So I can break some guys leg”…Mom’s evil eye sweeps in, and he completes his sentence….”and then pray for him.”

You don’t get much more Christ-like than that.

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KALA (who has moved away, and I miss her so much)

Her dad: “Kala, you can’t keep downloading music for free. It’s illegal, and they are starting to prosecute people.”

Kala: “Uh Uh”

Her dad: “Yes, they are”

Kala: “I don’t believe it.”

Her dad: (Getting exasperated) “Kala, I read it in the newspaper.”

Kala, “They can’t KILL people for that!!”

Her dad: “Prosecute Kala, not execute.”

That still makes me laugh. In her defense, that was years ago, and she is in her second year of college, and really quite bright.

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LUKE

Noticing that all his classmates were getting new babies (He is four), Luke, naturally wanted one of his own.

Luke: “Mom, when we get a new baby, I want to name him Carl.” (Seriously, Carl….you have to wonder where he thought of that particular name)

His Mom: “Luke, we aren’t having any more babies.”

Luke “Wait”…long pause while he thinks this out. “I WAS the new baby, wasn’t I?”

CHEATED! He felt cheated out of the baby experience.

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HALEY

When Haley was 3, and Logan 2, I picked them up from preschool. Out of the back of my van, I heard my perfect little girl say, “Logan, when we get home, let’s get naked, and put our butts together.”

WHAT??????

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BRUCE and CHERYL

I am thinking of having surgery on my stomach muscles, stretched from pregnancies, and three surgeries….so I can button my pants again.
We go to the consultation, and the doctor photographs me in paper underwear….and NOTHING ELSE……WITH Bruce in the room.
After the doctor leaves, Bruce says , “Did we just have a threesome?”

EEEWWWWWWW!!!!!!

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Okay, so back to the real world.

Please pray for Mason, he has his EEG, and possibly a final diagnosis tomorrow. They have not been off my mind even for a minute this weekend, and Lisa, sorry I haven’t called…I have had a toothache, and it’s hard to talk…but, I’ll call in the AM, and will be praying without ceasing for your strength and faith in God’s great plan for little Mason.

Taylor flew to Heaven today, Please pray for her family and her twin sister.

Rachel is struggling, and her family is asking we all pray for their miracle.

Penelope is having so much pain. Please, just pray.

And, of course, for the 33 families of the children and teachers who died at VA Tech this week.

Blessings to you all,
Cheryl

Thursday, April 19, 2007 7:54 PM CDT
Just so we are all clear........

I am NOT smarter than a 5th grader.

Humbled,
Cheryl

Sunday, April 15, 2007 5:11 PM CDT

You know what they say….”time flies when you are….uh….sitting on your duff….eating ice cream…..watching mindless Tv…..and generally feeling sorry for your self.”

That IS how that goes, isn’t it?

Regardless, it doesn’t seem like a whole week since I wrote here. And it HAS been a crazy week.

We bought two new cars in one day. TWO!! How self-indulgent does that sound? I am almost embarrassed to say it.

The way it unfolded is that I decided to trade-in my minivan. For emotional reasons. We had bought that car a month before Haley died, for the express purpose of driving it back and forth to Atlanta. It was the nicest car we ever owned, and we did it for Haley.
Anytime I drive it, I am reminded of that, and as much as I love my van, it has a bad vibe attached. A sadness.
So, I got to thinking about it, and made a deal with Honda to give them my fully loaded 2005 van for a fully loaded 2007 accord. Just even trade.
But, while we were there, we decided it was time to trade in the old (2001) van also. So, Bruce bought a 2007 Honda Element, in Kiwi green.
It looks like a clown car. Like the back will explode any minute and dozens of clowns will come tumbling out.
The kids are of course, beside themselves. They LOVE the clown car. ?

So, three hours at the car dealership, and then dinner out at the local pizza place. That is a ton of excitement for us.

The kids are all doing great. I am going to put Kendall back in school this Fall. I think it is time. For her, not for me. I am going to miss her terribly, and am trying to figure out how I will fill my days. I really need to do something, or I know I will do nothing. It is so easy to do nothing. It is what I do best.

On to other things.....

We, Haley’s Foundation, are doing a special fundraiser for Lisa, my very dear friend, and the mom of Aiden and Mason.
Aiden had a liver transplant in 2002, and now his little brother, Mason is dealing with health problems of his own. They have found a “lesion” on his brain, and will need to operate soon. We should all know more next week.

In the meantime, I am trying to raise enough money to cover one month of household expenses for the family.
Any donations will be tax deductible.
To donate, send a check to”
The Haley Vincent Foundation
304 Cain Drive
Blountville, TN
37617

Be sure to put “Mason’s fund” in the memo section.
And, I will keep you all posted.

The foundation pays for “Miracle Mail”, but it is Lisa who works tirelessly to get those packages to the kids.

I will write again soon,
Cheryl

Sunday, April 8, 2007 2:03 PM CDT

Hello everyone,

Today is Easter. I love Easter. I love when the newscasters refer to it as “the most important day on the Christian calendar”.

This Easter, Kendall’s friend David, was baptized. I am sorry that I missed it (more on that later) but the rest of the family was there. I was thinking about it today, what an important moment in his life….THE most important moment in his life. I was thinking of how one day, I would be among those welcoming him into Heaven.
I think I will delight in telling him stories of he and Kendall, and the mischief they made at our home. Like the time they filled all the Tupperware containers with water, and then “freed” all the goldfish crackers, so they could swim.
I am rejoicing with David’s family today, in the decision he has made to accept, and live for, Jesus Christ.

I heard on the news today that a Cardinal was blessing some Easter baskets, slipped on the Holy water, and broke his hip. Now, that has to be painful, and I hate that his Easter is being spent in the hospital, when he was just trying to be a good priest and make the kids happy…..but, I have to admit, I also found it a tad amusing. God’s way of saying, “ It’s NOT about the bunny!!!!!!”

So, about why I missed church today. The mystery illness. It started the night before I spoke at Emory, and is still going on.
I, of course, hate to go to the doctor, so I just try to figure it out myself. Bruce thinks it may be a gallbladder issue. I just know I feel terrible a good chunk of each day. Nausea, headaches, fatigue, muscle joint pain, stomach aches, worse than usual insomnia….the reason for missed church…didn’t fall asleep until 6am….I may have to see a “real” doctor soon, not just my husband.
Which brings me to my next subject….

Post-Traumatic-Stress-Disorder.

I think the phenomenon was first identified as Vietnam War vets returned home. They came home, changed, from their experiences. How could you not be? It amazes me, now, that we all expected these young men and women to come home, and pick up where they left off. They had killed people, been shot at, seen friends they loved die, seen atrocities unimaginable to us, of course they came back traumatized.

One of the defining symptoms of PTSD is flashback. Some trigger that transports them back to a particularly disturbing and traumatic event. They can smell, and see, and hear, and taste things exactly as they were. They remember it as if it were perfectly preserved, and frozen in time…because it is…in their minds.

I have been in my own war. A war many of you have fought as well. One where we have seen, heard, thought, smelled, and experienced the unthinkable. One where our hearts have been broken, and our brains traumatized.

I have particular trouble with all things medical. A waiting room, an x-ray, lab work, can send me into a full-blown anxiety attack. I avoid these places to the extreme. Other than 2 ER visits, my kids have not seen a doctor since Haley died. The pediatrician’s office seems just too difficult. My mom takes them to the dentist for me every six months.
I never drive by the hospital where Haley died, and have no plans to ever step foot inside again. Luckily, there is another, smaller hospital in town, and a larger one just a few extra miles away.

Yesterday, we were at Chuck E. Cheese as a birthday treat for Kendall. Not a party, just us. Haley had her birthday there when she was three, so I was steeling myself for the ordeal. But, it wasn’t bad. They had totally renovated it, and we stayed on the “big kid” side, and it was fun to see our kids having fun.
And then, right in my line of vision came a little girl. She was on a riding game with her back to me. All I could see was long, straight, blonde hair bouncing on the back of this three year old girl, dressed all in pink. From behind, she looked exactly like Haley.
I watched her mom, watching her, and I thought about how lucky she was, how she was going to brush that pretty hair tonight, and how her little girl would smell and feel and look in her little pink nightgown as she readied her for bed. And how she would read her a story and tuck her in, and cover her pink little face with kisses.

I thought of all that, as the tears slid down my face, and my own children watched me with sad eyes….with knowing, and all too wise eyes.

I wonder if there is a cure for PTSD?

Well, for now I just depend on the strength of God to get me through…for “His grace to be sufficient for my needs”

With love,
Cheryl

Tuesday, April 3, 2007 9:49 PM CDT

I was honored to be asked to speak to a class of graduate chaplaincy students, at Emory University in Atlanta.
This is what I shared with them.

For anyone who has ever had a child diagnosed with a life threatening illness, there becomes a “before and an “after.
A moment in time that divides life as they once knew it forever. Into a “Before and an “after.

On Jan. 21, 2001, I was a “before person. I had a husband, four healthy children, I sang in the praise band at church, and taught Sunday School.

I can tell you the exact moment I became an “after” mom. Jan 22, 2001,
Our 7 year old daughter stayed home from first grade with a fever.
She was snuggling with her dad, who happened to be a FP doctor.
A father’s caress turned into the probing fingers of a doctor on her abdomen.

Then he came to tell me the words that started our nightmare. “Her spleen is huge.” I tried to tell myself it was nothing, but I knew in my heart it was something.

And it was

24 hours later, our daughter was in the PICU. 48 hours later she was being transferred to Duke by air ambulance, and on a ventilator after suffering respiratory failure.

Our story is long, but Haley was finally diagnosed with an immune disorder that was attacking her liver. One night in the hospital about six weeks into this new life, Haley was having horrible pain, despite many doses of IV Demerol.

She said to me, “Mommy, I have been praying so hard. Why doesn’t Jesus just take this away?”
It was like being punched in the stomach. After all, she was an innocent first grader who had been raised in church, believed in prayer, believed God loved her. How could I explain how a loving God could let her suffer. I couldn’t comprehend it myself.

I went into the hall to compose myself, and I prayed, “Lord, I would rather she lose her life than lose her faith. Please let her feel your love”.
I reminded myself that God loved Haley even more than I did, and walked back in to her room. I told her I didn’t know why she was still in pain, but what I DID know was “God is real. God loves you.
And he never promised us we wouldn’t suffer in life, only that He would never leave us. And He never will leave you.”

We spent the next 5 years on the up and down rollercoaster of this illness. Mostly down.
Haley endured one crushing blow after another.
She was hospitalized many times, often,right into the ICU, she needed to be on a ventilator 4 times, she had 2 bone marrow biopsies, 5 liver biopsies, 2 skin biopsies, the added blow of a second life threatening illness, making her one of only 4 in the world with this combination of diseases, she had to have emergency brain surgery and woke up in the ICU with a shaved head.

And know that I am leaving out hundreds of office visits, blood draws, scans, xrays and IV sticks. She has had shingles bad enough to paralyze her foot and her bladder to shut down. She had to be catheterized every six hours for weeks.
She went through 2 rounds of chemotherapy in desparation to get control over her immune system. She was placed on the waiting list for a liver transplant, and then taken back off because she was too sick.

While she went through all of this, I saw something amazing taking place.
A miracle, really.
My daughter, in spite of all this unfairness, was growing into a beautiful, compassionate, brave, kind-hearted child.

In spite of taking blow after blow, my daughter’s faith grew. She started writing songs, first funny songs about liver disease, that she gave to other kids struggling…and then, praise music.

We visited a friend in the hospital, she was in pain and really unhappy. Haley and I were staying at The Ronald McDonald House. Haley sat at that kitchen table and wrote a song for her friend…and the next day, she brought it to her and sang for her. She named it “Sarah’s song” and she sang about how God would never leave Sarah, no matter what.
I am happy to tell you that Sarah had a liver transplant a few weeks later, and has not spent a single night in the hospital since then.

I thank God that I started this journey with a strong foundation of faith. Because few things test your faith like watching your child struggle and suffer, and fight, and stand by helplessly.
Nothing tests your faith quite as much as watching that child. Why? I asked myself, “If God were going to take her anyway, did she have to suffer, our whole family had to suffer for 5 years? The answer, I believe, is that there are many lessons to be learned through suffering, lessons that can ultimately help others.
As a Christian, I am in excellent company, being in the midst of suffering. I can give you example after example of suffering for a greater good all through History. God wants us broken before Him.
He does His best work, offers his most amazing grace among the broken hearted and vulnerable. A vulnerable heart is a heart ready to be molded…one way or another.

I think about the moms and dads across the street right now at that Children’s hospital who maybe don’t have such a strong foundation. I know how scary and isolating those hospital walls are.
As chaplains, you will have the unique opportunity to reach out and comfort them. And you will find them in all types of states. They will be sad, angry, depressed, numb. And they all need the same thing…love, compassion, and most importantly hope. Hope for this life, and hope for eternal life as well.

When Haley died on October 1, 2005, a big part of me died as well. I lost my daughter and so much more. I lost my own life, my way of living, I lost my innocence and optimism. I lost family and friends who just didn’t understand the depth or length of my grief. I lost my job as her mother and caretaker, I lost my best friend, and I lost my mind.

I truly cannot imagine a worse trauma than losing a child. If there is one, I don’t want to even know what it is. As isolating as her illness was, her death was so much worse.
My world shrunk to my bedroom and my living room. I never left my home. I just wanted to curl up in the smallest place I could and never move again. 18 months later, I still feel that way very often.

What I would tell others about grieving a child is pretty simple, but very important.
1. It takes a long, long, long time to get any kind of “life” back. Years. I am no where close.

2. We cry all the time, every day for years. It is normal. Don’t try to make it better. You cannot. Just pass the Kleenex.

3. Visit armed with meaningful scriture, not clichés. Not she’s in a better place. Or God doesn’t give you more than you can bear. UHH Yes he does. But, from the Bible verse, “His grace is suffient for me”…makes sense to us. We can only deal with one day at a time, sometimes one hour at a time, and His grace is suffient for that amount of time.

4. And don’t give up. These people need to know someone cares. Keep calling. Leave messages, send emails, and, of course, keep praying.

I’ll leave you with a song about hope and faith, written by a pretty amazing 11 year old girl. In the face of tragedy, my daughter sang.

Everywhere plays

Monday, March 26, 2007 9:51 AM CDT

What the tattoo artist said, “ Have you ever been sunburned and rubbed against something? That’s what it feels like to get a tattoo.”

What he meant, “ It feels like four big, hot needles being burned through skin, muscle, tendons, nerves directly into your bones. It’s a bit like being branded with hot coals.”

What the tattoo artist said, “ You won’t have any pain afterwards. Once you leave here, it is done.”

What he meant, “ It will feel like someone has done surgery on your foot. The pain will keep you up at night, and you will be popping pain pills, and rubbing Vaseline into it like crazy to try and stop the burning. You won’t be able to wear shoes for several days, because the rubbing will cause you intense pain.”

What the tattoo artist said, “Everytime you look at this, you will think of your daughter.”

What he meant, “Everytime you look at this, you will think of your daughter. Everytime you look at anything, you will think of your daughter, because it is not your foot she is burned into, it is your heart.”

Tattooed,
Cheryl

Tuesday, March 20, 2007 11:12 PM CDT
I received this email recently. It speaks for itself.

Dear Cheryl and family,

I am writing this from home, exhausted and but a new feeling of faith instilled in my heart. This past weekend, March 9-11, I served on the ECHO weekend I have previously told you about. I have never before felt so loved, so small in His presence, and most importantly, faith filled. I hope this is the same feeling you have every time you share Haley’s song with someone new, knowing that you are sharing her immense love.

The weekend began on Friday. Haley was in our hearts from the start when Mary Becker told me that it would be an amazing weekend, and that “we had someone special watching over us”. The team had been preparing all day, praying together and supporting each other.
Thirty one girls nervous girls arrived, completely unaware that their lives would be forever changed the next time they got in their cars.
Before I knew it, I was called to give the first talk of the weekend. As I started, my voice was slightly shaking. After I got to the end of my first page, I looked up and saw the empty seat in front of me. I was reminded that a fellow team member was in the chapel praying for me throughout the entirety of my talk. My nerves were eased as I continued.

When I came to the point about Haley, I stopped and drew in a breath. I knew that this part might be difficult…to talk about a wonderful little girl, who, although I never met, have grown so fond of. I was scared that the candidates might think it’s strange that I care so deeply for her, but I was wrong. I went on and started to tell Haley’s story, trying my hardest to share her gifts with the girls. After speaking of Haley for quite some time, I looked out and saw something special – tears.

I knew that I had touched at least one person by Haley’s words. If I had gotten through to one person, that was enough. I continued on, and eventually drew my talk to a close. My song, “Always There For You”, played and I went to the small chapel to say a prayer of Thanksgiving and spend some time with Jesus. Those minutes I spent in the small chapel alone probably my favorite of the entire weekend. Kate, who had spent the time I was giving my talk in the chapel praying for me, said a prayer aloud, and then left me alone. After trying to hold it together for the girls, so they would not be intimidated by my tears after only an hour into their ECHO experience, I finally was able to let go. I sat and prayed aloud as tears streamed down my face. I prayed for the candidates to be receptive of my words, and I thanked Him.

I started to pray for Haley, for you, for your family…until I was moved in a different direction. The spirit inside of me spoke, and I started to have a conversation with Haley. My face and tears were buried in my hands, and I spoke to her. I knew at that moment that Haley was there. I felt that dear Haley was sitting next to me, and I could feel the light from her smile radiating around me and filling my heart. My tears stopped…there was no need to be sad, for she was there with me. I asked her to stay with us for the weekend, to be our angel. I shared moments with her in silence just before Kathie, the rectora (facilitator) of the weekend, came and wrapped her arms around me and told me it was time to head back and listen to the summaries presented on my talk. The words said during those summaries are blurry, but the feelings are there. They got it, they understood.

The day soon turned into night, and we went to bed. We awoke the next morning and carried on with more talks, songs, and normal business. I was leading my table is discussion with soft music playing in the background. Suddenly, Haley’s song “Everywhere” came on. It was a mistake – Mary Becker’s talk had not yet been given and her song was not supposed to play at that point. But no one seemed to notice…and once again, I could feel Haley smiling. She was there, and just wanted to make sure I knew it, too.

Late Saturday night we all gathered in the large chapel. The lights were dim, and the main light source of the room came from a row of candles that sat upon the mantel. Mary got up to give her talk, called “Christ the Man, Christ in Man/Woman”. It was a wonderful talk with a simple main message: pay God’s love forward. Mary’s words about Haley expanded on my talk from the previous night. She spoke of Haley in such a pure and genuine way, and I could not help but begin to cry. “Everywhere” played, and through my glassy eyes, I watched the faces of everyone there. It was a moment I will never forget – it was about midnight, the light was shining from the candles, and silence filled the room. Haley’s song came on, and her sweet angelic words literally look the breath away from so many that night. I could feel the love of His arms around me, and just by looking at the girls seated around me, I knew they could as well. Haley would have been so proud of those girls – in that moment, I know they saw Him everywhere.
After the song and talk concluded, I gave Mary a huge hug and she whispered in my ear, “I hope I did her justice”. It’s a hard thing to do, but Haley was smiling and I was crying happy tears.

Your daughter is a blessing who continues to touch the lives of people all over the country. I am so thankful and honored to have been able to get to know her through you, and especially for having spent such special moments with her this past weekend. I carry her in my heart each day, and strive to show other His love the same way she has.

Love & prayers always,
Laura

Laura, you are so special to me. I know we will meet one day.

Blessings,
Cheryl

Friday, March 16, 2007 7:44 PM CDT

I am not sure I have quite fully explained the butterfinger granola bar obsession.

The sheer enormity of it.

It started innocently enough, two for breakfast, a couple at lunch, they are only 100 calories each! THAT is what sucked me in…thinking I was actually eating “health food”.
Anything with “Butterfinger” on the label is NOT health food, just so you don’t fall into the same trap.

Anyway, pretty soon, and I mean REALLY soon, I was stuffing those bars in my mouth like crazy. I could easily eat a whole box in one day.

Breakfast, lunch, dinner, even in the middle of the night. I was out of control.
THEN, I started hitting the stores and buying out their whole supplies of butterfinger granola bars.
If they had one box or 22, I bought them all.

Seriously, 22 boxes.

So, after about three weeks of this, I get on a scale. I have gained 3 pounds in three weeks!! Which makes a total of 23 pounds in the last year.

Obviously, the madness had to end. No more granola bars. I can’t even have ONE, or I’ll eat the whole box.

Okay, so tonight, I am cleaning up my desk, and under some papers, there it is….an opened granola bar box. I froze.
I told myself, “Don’t get your hopes up, it is probably empty.”
Imagine how it felt to feel a slight heaviness in the box. “Just one”, I’m thinking, but the Lord blessed me with four.

There were four left.
And I knew I was going to eat them, and just so I wouldn’t have to share them…I went ahead and hid them under a sofa cushion…for tonight….”Grey’s Anatomy” and granola bars.
Bliss.

Blissfully,
Cheryl

Wednesday, March 14, 2007 1:02 PM CDT

Two updates in two days….hmmm

Bruce is building a garden in our backyard…a memory garden. Since we don’t have a gravesite, I wanted a place to go to just sit. So he is building this half wall, with a stone bench under our tree. Lots of blooming pink plants…azaleas, rhododendrums….and hopefully our roses survived. We are building a stone path with words on the stones. Haley used to find and paint rocks. We have them everywhere.
We are still deciding whether to engrave the bench or to implant a plaque in the ground.

It’s so sad. I want her to playing in that yard. Everytime I watch the kids on the trampoline, I remember her out there swinging, sliding, jumping on the trampoline.

Still thinking about Lisa and her family today. The testing for Mason is Friday, April 9th. We need to be in prayer for all of them. Aiden and Mason

Cheryl

Tuesday, March 13, 2007 8:46 PM CDT

Go send some love to Lisa. Life has been kicking her alot lately.

All she wants is to be a mom, and in her spare time work with the foundation to help other kids.

I am sad for her, and I am angry for her. It is so unfair to be dealing with serious health issues with, yet, another child.

And she stays strong, focused, and faith-filled. Lisa, you are my hero tonight.
I hope you feel me wrapping you in love and prayers.

Cheryl

Tuesday, March 6, 2007 12:49 AM CST

I have been working on our Foundation so much, it has been absorbing my days. At least the part of my day where I function.

I have been asked to speak to chaplaincy students at Emory on grief and loss. It is really an honor to be asked, and I hope to inspire them with Haley’s story. It is on March 28th, and I am making Bruce go with me. I can’t face Atlanta alone again.

And in thinking so much on the Foundation, I have been thinking about “our” kids and their families. So many families facing so many hurdles.

So, today I just want to pray for the success of this Foundation, that it may help others with love and compassion.

And for the kids, our little warriors, always fighting..

Kelly

Rachel

Roger

Aiden and Mason

Hunter

Jen and Jon

Mark’s family

Lizzie’s family

Kyle’s family

Olivia’s family

And so many, many more….

May God hold them all tightly in His arms today.

Praying,
Cheryl

Monday, February 26, 2007 7:08 PM CST

“But, Inside I am Screaming.”

I saw that book title recently, and thought it summed it all up pretty well.

I went to Atlanta last week for the HVF meeting, and it was both good and bad.

Good in that we accomplished some important stuff.

Bad in that I was a total wreck. Pretty much the whole time.

I returned to my hotel room after the meeting about 1:00PM, crawled into bed, and just waited for the day to be over. And cried. And cried. And cried some more.

When night finally came, and darkness filled the room, I opened the nightstand, and found the hotel Bible.

Then I took the Bible, and put it under my pillow.

I slept on the promises of God.

“As the deer pants for the water brooks, so my soul pants for You, O God”
Psalms 42:1

Cheryl

Saturday, February 17, 2007 2:29 PM CST

*Please read the bottom of the journal for new Foundation information*

I haven’t talked about the grief journey for awhile, and I think it’s time.
I get a lot of emails from parents who have lost children, wanting to talk, wanting reassurance that what they are feeling is okay, and mostly asking how to deal with friends and family who just don’t “get it”.
So, today is going to be about that.

Most of the things I am going to say here are from my direct experience with the loss of a child. Other people may have different opinions or experiences, and that is completely valid. I can only speak to what I have been through personally.

Just like there is no greater love than a mothers for her child, there is no greater loss. It is not something that can be put into words, anymore than you can tell someone what it feels like to give birth. Have you ever tried to explain to someone the love you feel for your child? Only another parent understands that love. Only another parent can understand that loss.

As a parent, you can IMAGINE the pain, and you can empathize with it. But, you really cannot know how it is to live with it, day in and day out.
Every day, simple, common things bring up painful memories. Just the other day, for me, it was froot Loops. I have a froot loop story, that I won’t bore you with right now, but suffice it to say, it’s a hospital memory, it was an important day, and froot loops were involved. So now, froot loops make me sad.

As do, a million other things….playgrounds, theme parks, ice cream, American idol, church, music, silky pajamas, fun shoes, giraffes, Clifford books, cheetah girls, sno-cone machines, crafts, American girl things, baseball, school, valentine’s day parties, and, as I said, a million other things.

I saw a cremation scene on “Desperate Housewives” that dropped me to my knees. It still haunts me. The other millions of viewers probably thought little of it.
I drive miles out of my way to avoid the hospital, the funeral home, the middle school, lots of places….

We live with constant reminders of what we have lost. Nobody knows what that is like, until you have lived it.
So, as our friends, the first thing is to realize that you don’t really know what this is like. And that is Okay. Believe me; we don’t want you to know what it is like!
But, if you acknowledge this, you will be less likely to offer, what is sometimes hurtful, advice.

So, I am going to share a few things I have learned along this road, to hopefully, let you understand how you, as friends, can help those you love who have lost a child.

1) It’s Loooooong….. process. Grief has its own time space continuum. A week is a minute. A year is a month. Time passes, but grief stands still. In the beginning, there is no passage of time. Time may heal, and I believe it does get easier, but not in what most people think is a “reasonable” amount of time. Take what you think is reasonable, and triple it…and maybe…you will be close. I am 16 months into this journey, and I can see, that I am still at the very beginning.

2) Grief is selfish. Our feelings are so intense, that it takes all of our energy, just to survive. We have no energy for socializing, we don’t want to write thank you notes, or return phone calls. It can be a “full” day to just shower and change our clothes. And again, this goes on for a looooooong time.

Now here’s the part that isn’t fair. Just because we push you away, don’t answer your calls or emails, stop coming to church….that doesn’t mean we don’t need you. We need you to leave us messages that say “I love you, what you are going through is horrible. No need to call back, just wanted you to know we are thinking of you, and we miss you’. Even if you never get a call back, we HEAR those messages, and they help. We READ those emails and guestbook entries, and they help. We want our friends to continue to be there, even when the friendship (seemingly) becomes one-sided.
It is common for people to think, when they don’t hear back, “She doesn’t want to be bothered” Well true and not true. We don’t want expectations placed on us, but we do want, and need to be reached out to.
And at the risk of offending some, let me also say, on this subject, it is NOT okay to abandon your friends. It is NOT okay to think that attending the funeral, or bringing one meal is enough. If you care about this family, you will step up, check in, send emails, cards, make phone calls…not just in the days and weeks, but in the months and years to come.
Grief is selfish. It is not easy to be the friend of a bereaved parent. It separates out the real from the fair weathered in a hurry.
And IF you stick it out, IF you become one of the few, well that makes you a hero. I look at my friends, and feel sorry for them…I am a lot of baggage to drag around, but I know the ones who have stuck, are in it for the long haul. The others, well, it makes me sad.

3) Sometimes, in trying to help, you can make things worse.
I wish I had a dollar for every time I have heard, “you need to get out of the house”. No. I need my daughter back. Getting out of the house does not fix that, and you saying it over and over only puts unneeded stress and pressure on me.
Here’s the tricky part….don’t stop inviting us places, just make sure you give us an easy out. Every invitation should come with the knowledge that we can back out or leave as our emotions dictate.
Early on, the best invitations are to meaningful events, not just for “fun”. Movies and parties can make us very uncomfortable.

4) Please let us do as much as we can in our own homes. It is easier to have people in, that to go out. Our best friends will call and say, “We’d like to see you, when can we come over?” Thank goodness they do that, or we would never see anyone.
Instead of inviting them out to lunch, offer to pick up lunch, and bring it over. Better yet, Give us the choice. I still have not been to lunch or a movie for pleasure. It is too hard. I have, however, had friends over for takeout and to watch TV. We love that, and our kids love it too.

5) Don’t ever forget our child. Let us know if you have a picture on your refrigerator, or if you listened to her music one day. People, wrongly, think bringing up the subject makes us sad. What makes us sad is having a special day or time with friends and no one mentions her. She existed. She was everything to us. And even if you don’t bring it up, believe me, she is on our minds.

6) We are still crying. Be okay with that. Tears won’t kill any of us. They are a normal expression of sadness. And we will be sad forever. We will be quick to tears forever. Please don’t say, “Don’t cry”. Just pass us the Kleenex.

7) I can be crying for hours in the morning, laugh at something at lunch, be in a fetal position by dinner. Don’t judge me. Don’t tell me I am too happy OR too sad. I am exactly where I need to be.

8) Help us keep our faith. Pray for us, and with us. Just saying “she‘s in a better place” isn’t as helpful as actually quoting us the scripture that TELLS us that. Tell us something about Heaven.
Read about grief, read about Heaven, so your words can be a comfort to us.

9) Understand that we do not feel “normal” anymore. We don’t belong anywhere. We are forever changed. We are not the same people we were before this happened. But, we ARE still people. We still need our family and friends.

I hope you take all of this in the spirit of love and friendship. If you are reading this, you care enough about someone in these shoes, to make a difference in their life.

From the brilliant Randy Alcorn’s book “Heaven,
“Father, thank you that our gifts, and passions, and special interests, are not an accident. But, are part of the way you have wired us. Thank you that You have intricately designed each one of us to uniquely express Your Glory.”

*FOUNDATION NEWS*

We will be starting a “blogging” feature next week on the foundation website.

I will be taking turns,with Lisa

We will blog, consistently, every Monday, and hopefully we can add and change pictures as well. We plan to make the blog both personal, and topical. We will write about topics from our own unique perspectives. Our first topic will be organ and tissue donation. I hope we will have a guestbook soon for feedback also. This blog, is in addition to what we already post on our respective caringbridge pages.
When you check in, please check the new events, as we add them as they come up, and we are about to post several new fundraisers and opportunities to help.

We also intend to create a ‘prayer request’ page, where we will feature short synopsis’s of children, specific prayer requests, and links to their sites. We want to include children in all phases of illness and treatment. Please consider allowing your child to be featured there.

Last, but certainly not least…go there RIGHT NOW and listen to the final song for Haley’s CD, written for Haley (by Steven Wagner) and sang by Kim Miller. It is called “A Voice Above the Crowd”, and it is amazing!!! I am so proud of my girl.

Thanks for being here,
Cheryl

Wednesday, February 14, 2007 2:40 PM CST

Let’s talk about granola bars for a minute.

I have always put them into the “health-food” category, because, let’s face it, my sweet treats are things like donuts, cookies, ice cream, reeses peanut butter cups…..not much that resembles granola.

In an effort to subtract a little fat from my life, and my butt, I decided to stock granola bars as treats, and forego the rest. At 100 calories each, it worked great for a couple of weeks.

Until…
I discovered the “butterfinger granola bar”. It started innocently enough, a couple here or there.
One day, I found myself taking every box in stock off the Walmart shelf (14) and considering running to Food City to check out their supply.
And there it was. No hiding from it.

I had a 10-bar-a-day-butterfinger-granola-bar MONKEY ON MY BACK!!!!

I was binge eating granola bars. How pathetic is that? Where, oh where, has my self discipline gone?
Now, I have one more thing I can never buy, because I will eat the entire box.

Anyway…onto my real topic. Tony Dungy.

The coach of the Indianapolis Colts. I like the Colts, but never knew much about the man.

In December, 2005, his son committed suicide. It was only two months after Haley died, and I couldn’t believe he was back coaching in a week.

I remember thinking, “How can he think football is important right now….he should be home with his family.”
Well, I didn’t know anything about Tony Dungy.
And yet, I judged him, and found him lacking.

After this years superbowl win, Tony Dungy had this to say,

"It's great to be here," Dungy told the crowd, then adding with a
laugh,

"I just wish I wasn't here in this capacity so many times of being just
that close to being in the game and just being an invited speaker.

"My goal is to have our team here one day and have a couple of tables
with all of our guys here. Because we have a special group of young
men, a great group of Christian guys.

It'd be wonderful to have them here so you
could see their hearts and what they're all about.

"It hasn't quite happened yet, but we're still hoping one day it
will."

He told them he was going to talk about lessons he had learned from his
three sons. The crowd fell silent. Then Dungy spoke.

And although this was a breakfast - and although at many such events
speakers speak over the clinking of glasses and murmurs from
semi-interested listeners - for most of the 15 minutes the room was
silent except for Dungy's voice.

He spoke of his middle son, Eric, who he said shares his
competitiveness and who is focused on sports "to where it's almost a
problem."
He spoke of his youngest son, Jordan, who has a rare congenital
condition, which causes him not to feel pain.

"He feels things, but he doesn't get the sensation of pain," Dungy
said.
The lessons learned from Jordan, Tony Dungy said, are many.

"That sounds like it's good at the beginning, but I promise you it's
not," Dungy said. "We've learned a lot about pain n in the last five
years we've had Jordan.
We've learned some hurts are really necessary for kids.

Pain
is necessary for kids to find out the difference between what's good
and
what's harmful."

Jordan, Dungy said, loves cookies.

"Cookies are good," Dungy said, "but in Jordan's mind, if they're good
out on the plate, they're even better in the oven.
He will go right in the
oven when my wife's not looking, reach in, take the rack out, take the
pan out, burn his hands and eat the cookies and burn his tongue and
never feel it. He doesn't know that's bad for him."

Jordan, Dungy said, "has no fear of anything, so we constantly have to
watch him."

The lesson learned, Dungy said, is simple.

"You get the question all the time, 'Why does the Lord allow pain in
your
life? Why do bad things happen to good people? If God is a God of
love,
why does he allow these hurtful things to happen?''' Dungy said.
"We've learned that a lot of times because of that pain, that little
temporary pain, you learn what's harmful. You learn to fear the right
things.

"Pain sometimes lets us know we have a condition that needs to be
healed.
Pain inside sometimes lets us know that spiritually we're not quite
right
and we need to be healed and that God will send that healing agent
right
to the spot.

"Sometimes, pain is the only way that will turn us as kids back to the
Father."

Finally, he spoke of James.

James Dungy, Tony Dungy's oldest son, died three days before
Christmas.
As he did while delivering James' eulogy in December, Dungy on
Saturday
spoke of him eloquently and steadily, speaking of lessons learned and
of the
positives taken from experience.

"It was tough, and it was very, very painful, but as painful as it was,
there were some good things that came out of it," Dungy said.

Dungy spoke at the funeral of regretting not hugging James the last time
he saw him, on Thanksgiving of last year.
"I met a guy the next day after the funeral," Dungy said. "He said, 'I was there. I heard you talking. I took off work today. I called my son. I told him I was taking him to the movies. We're going to spend some time and go to dinner.' That was a real, real blessing to me."

Dungy said he has gotten many letters since James' death relaying similar
messages.

"People heard what I said and said, 'Hey, you brought me a little closer
to my son,' or, 'You brought me a little closer to my daughter,'''
Dungy said. "That is a tremendous blessing."

Dungy also said some of James' organs were donated through donors
programs.

"We got a letter back two weeks ago that two people had received his
corneas, and now they can see,'' Dungy said. "That's been a tremendous
blessing."

Dungy also said he received a letter from a girl from the family's church
in Tampa. She had known James for many years, Dungy said.
She went to the
funeral because she knew James.

"When I saw what happened at funeral, and your family and the
celebration
and how it was handled, that was the first time I realized there had to
be a God," Dungy said the girl wrote. "I accepted Christ into my life and my
life's been different since that day."

Added Dungy, "That was an awesome blessing, so all of those things kind
of made me realize what God's love is all about."

Dungy also said he was asked often how he was able to return to the
Colts
so quickly after James' death. James died on December 22, and Dungy
returned to the team one week later. Dungy said the answer was simple.

"People asked me, 'How did you recover so quickly?"'' Dungy said. "I'm
not totally recovered. I don't know that I ever will be. It's still very,
very painful, but I was able to come back because of something one of
my good Christian friends said to me after the funeral.

"He said, 'You know James accepted Christ into his heart, so you know
he's in heaven, right?' I said, 'Right, I know that.' He said, 'So,
with all you know about heaven, if you had the power to bring him back now,would you?' When I thought about it, I said, 'No, I wouldn't. I would not
want him back with what I know about heaven.'

"That's what helped me through the grieving process. Because of Christ's
spirit in me, I had that confidence that James is there, at peace with
the Lord, and I have the peace of mind in the midst of something
that's very, very painful.

"That's my prayer today, that everyone in this room would know the
same thing."

That is my prayer as well, although I could never have said it as well as he did.
God humbled me with his speech. He reminded me of the sin of judgement.

And I have asked God to forgive me, and I wish I could apologize to Tony Dungy as well.

Judging others is a natural, and human quality. But it hurts people, and it is something that is specifically mentioned in the Bible many times by Jesus.

So, all I can say is, I’ll try to do better.

Love to you all,
Cheryl

Wednesday, February 7, 2007 7:20 PM CST

By good old fashioned hard work and an excellent work ethic, my eldest son brought home a wonderful grade in Math this semester…….NOT!!!

Oh, wait…..by NEVER cracking a book, my eldest son brought home a deservedly bad grade in Math this semester.

I won’t embarrass him by telling his grade for all to see, but it is the 6th letter of the alphabet, and if you can count that high, you are, apparently better in Math than my son.

Now, you may think that is a bit harsh…but this kid never studies! He skates by, with a little charm, and a lot of natural ability…but it is starting to catch up with him.

So, to tackle this problem he has been having for 10 years of school, we have decided to throw all of our parenting skills into one fast hard ball of discipline, and whip him into a studying, pencil carrying, and paper toting MATH-LETE!!!!

We don’t believe in starting them with good habits early…say in elementary school.
It is so much more rewarding when you all of a sudden realize that SAT’s are in 6 months, and it’s not a case of WHERE he can go to college, but IF someone, possibly blind, actually reads his transcripts, and ALLOWS him go to their school.

So, we have a two-pronged approach.

First…the study hour. It is like creepy, silent in our house from 7 to 8 pm. everyone around the dining room table, noses in books. Even the home-schooled one gets homework.

Our second plan of attack….we signed him up for tutoring 2 hours a week. And that is what initiated this conversation.

Me (talking to Bruce): “Did Nick go to his tutoring class today?”

Kendall….Snickers loudly

Me (Ignoring Kendall) “Is the math teacher his tutor?”

Kendall, who is bursting with giggles can’t stand it a second longer “He goes to a tooting class!”

Me: “What?”

Kendall: “A class where he learns to toot!!!!”
Kendall: , completely cracking herself up, screams….”He’s got a toot-er”

Bruce: (Proving once again, my theory that there is a 14 year-old boy in every man gets into the swing of things with) “What do you call a stinky teacher?”

Kendall: “A TOOT-ER”

Oh, good grief. Try to be a grown up around here…..

I can’t sleep tonight, and since I am pretty filled with those pills that are supposed to make you sleep, I am not sure how lucid this will be.
Hopefully, I will be smart enough to proof it, before I post it.

We all learn “Life Lessons” in life. One of the truest and funniest was pointed out to me by my lifelong best buddy, Jennifer. Although I agree with her, they are her observations alone.

I’ll set the scene.

First the cast of characters
Bad Girl (BG)
Bad Boy (BB)
Drug addicted stupid girl (DSG)
A badly beaten black woman runs into, and then behind, the KFC counters. (This is the DSG) The fast food employee’s spring into action, one holding pressure on a deep wrist cut. Another calling 911.
At this point, a well dressed black lady (BG) comes in, says that is my cousin...or friend maybe…she says. “I live around the corner; I can patch her up there, and bring her back here”
I KNOW what you are thinking..Those are the last words Mr. Grinch said to Cindy Lou Who as he stole her family blind.

At this point, the lady is cringing under the counter, and the police are called. Believe me when I say, that was one happy lady going to jail that night. You want to know why??

Because…

The BG (Bad Girl), had gotten herself into trouble and was about to go away for 20 to life. So, BG convinces BB (Bad Boy), into finding someone her size to create false dental records.

So the DASG, doesn’t seem to notice anything amiss when this couple approaches her, and says, “We’ll give you drugs, if you pretend to be this woman (BG), take her ID, and get your teeth cleaned and x-rayed.” She agreed to this, hence the “S” in DSG.

But something in this genius plan goes awry, they haven’t planned out the murder, so they beat her up a bit, cut her, and then leave her in another room while they discuss how to kill and bury her. So, showing the first hint of common sense beats it the heck out of there…to KFC.

The Life Lesson, in case you didn’t get it, Nobody wants to clean your teeth out of the kindness of their hearts.
And drugs make you stupid.

Your life tutor,
Cheryl

Tuesday, January 30, 2007 6:05 AM CST
Many people who have lost children, see special “signs”, comforting things that they know are sent from their child, or from God to reassure and comfort them.

I love reading about these experiences, and I believe every one of them

But, for me, it never seemed possible. I wore blinders for fear of deceiving myself into believing something that wasn’t there…for fear of making something sacred out of a mere coincidence.

However, I was reading the Bible recently, and it triggered a memory of the one “sign” I have always claimed….and with that came memories of more, and the clarity to see them for what they were.

I want to share them here.

A Pre Sign

Six months before Haley became ill; she had a vision of Jesus. Our lives were boringly normal at this time. Our conversation went something like this.

Haley: “I saw Jesus last night.”

Me: “Really, was He in your dreams?”

Haley: (Matter-of-factly) “No, he was sitting on the edge of my bed.”

Me: (Turning my full attention to her) “Are you sure you weren’t asleep?”

Haley: (Getting exasperated with me) “I was awake. He talked to me.”

Me: “What did he say?”

Haley: “He told me to never be afraid, that He would always be with me.”

I remember that like it was yesterday. It was late summer, we were in the kitchen, and all the hairs stood up on my arms and neck.

The Sign I Claimed

A few months after Haley died; she came to me in a dream. I am sure I wrote about it in this journal when it happened. She had on a white dress, trimmed in gold. I stared at her hair, it was so shiny.

And her face just glowed, and radiated health. I have never seen her look more beautiful. She didn’t say a word to me, she just let me look and drink her in, and then she lowered her face to mine, and so very gently, kissed my lips.

This is the verse that brought that memory to my mind.
“The joyful redeemed in Heaven are described as shining” and wearing “white robes”.
Daniel 12:3, Matthew 13:43

Praise You in This Storm

There is a very popular song by this name by Casting Crowns. If you haven’t heard it, you are missing something special. Just a few days after its September, 2005 release, someone gave me a copy of it. I put it in the CD player, and immediately felt how powerful this song was.

However, when it came to the line that talked about “The God who gives, and the God who takes away”, I stopped the CD. I couldn’t let my mind go there. I never thought Haley would actually die. And yet, less than a month later, she did.

As I said, it was a popular song, and one day, a few months later, my son, without telling me programmed it into my cell phone. It was not set as a ring tone; it was just on the ring tone list.

One day my phone rang. It started playing “Praise You in This Storm.” I looked at it, and the number was 555 555 5555. I thought it was a sales call.

This started happening numerous times a day.

Same song, same number.

I even took the phone into Verizon, thinking it was a simple problem. They said they had never seen anything like that before.

So, I started calling them my calls from Heaven. As soon as I did that, they stopped. I have not had one since.

The song has become very special to me, and it plays often.

I recently read about the little girl that song was written for. Her name was Erin. And several things struck me about her story parallels Haley.

Erin became sick in 2001…as did Haley.
Erin choreographed dances to praise music and performed them. Haley wrote and performed praise music.
Erin was saved after a Point of Grace concert. Haley’s favorite band was point of Grace.
Erin died on November 1, 2004. Haley died exactly 11 months later on October 1, 2005.

I hope they have met. I hope they entertain many with their songs and dances. I wish I could meet Erin’s mom someday.

The Beach

Something I never told anyone (except one person) is that I prayed on that car ride to the beach. I was so terrified to go, so afraid I would be overwhelmed with sadness, afraid I would be miserable and make everyone else miserable as well.
So, I prayed.
My prayer went something like this. “God, I have trusted you every step of the way. I have believed in your plan, and in your wisdom and your love. But, I have a favor. I need a sign. I need to know Haley is okay. In fact, could you send me three signs this week? Seven days, three signs….and I’ll never ask you again…please, just remind me you are in control of all of this.”

We had never been to this beach before, or this house. It had one store with an attached ice cream store.
And there it was. An ACTUAL sign. You look at that and tell me God doesn’t have a sense of humor.

That sign made the whole week bearable.

The second sign was a dolphin…and I won’t bore you with WHY that is important, I just knew it when I saw it.

I didn’t think I got my third sign until I was back home, and Lisa reminded me about all the nerve pain I suffered at the beach, and how Haley had the same pain, she couldn’t even move her foot one time at the beach. I never connected the two together, but Lisa said it was definitely my third sign.

God talks to us all the time….we just have to listen.

Love, Cheryl

__

Sunday, January 21, 2007 11:11 AM CST

A few days ago, I woke with terrible joint pain. This has been an ongoing thing for me that I hate to talk about, because it reminds me of how Haley suffered.

My pain has been thrown into the catch-all diagnosis of Fibromyalgia….but who really knows. Most of the time, it is an annoyance, but occasionally, it can be a real pain. Pun intended.

So, I keep thinking it will get better, but it is getting worse, and pretty soon I have a heating pad wrapped around each ankle. I don’t know why, since the pain was from my hips to my toes….the ankles were like a shot in the dark.

In our medicine cabinet is Ultram, which I am convinced contains no pain relieving component at all, probably the medical world’s attempt to appease us, without actually prescribing us, anything.
At the other end of the spectrum, we had Dilaudud, which, even for me, seemed a bit much for joint pain. (It’s really old anyway, prescribed years ago, for Bruce’s kidney stones.)

I called my husband, who was, as always, sympathetic. He offered to call me in something. (This is where I need to say that the single best perk of marrying a doctor is his prescription writing abilities.)
However, I wasn’t even in good enough shape to drive to the pharmacy. So, Bruce reminds me that we have cough syrup with Hydrocodone in it.
And there it is.
I am immediately sucking down sample bottles of cough syrup to get some pain relief. How pathetic is that?
Of course, about 20 minutes later, I was, literally, praising Jesus for creating opiates. You are never so aware of pain, as when it finally goes away.

And it reminds me of how strong my little girl was….of what she endured so bravely…of what so many of our sweet children endure.

And speaking of the children, I am meeting next month with hospital officials, including the chaplains, to discuss some ideas we have for memorial gifts and for future involvement our Foundation will have with the hospital.
I’ll keep you posted.
Also, we are hopeful the CD’s will be available in February. It seems like it has taken SO long, but I know, when we have them, we will be so glad we did all of it so carefully and professionally. I am looking forward to seeing the final product of all our hard work. And the tribute it will be to Haley’s life.

Until next time,
Cheryl

Tuesday, January 16, 2007 6:03 PM CST

Hello, my friends,

I have been watching Court TV lately. Something about watching other people live out their nightmares entertains me in some twisted way.

Right now, there is a trial going on, in which the wife is accused of poisoning her husband. Besides enough arsenic in his body to kill a small elephant, the key evidence seems to be, that she didn’t appear to be a typical “grieving widow”.

And, I think that it is very scary that this jury, who may never have experienced a shocking loss, would send someone to prison based on how she grieves. I have seen this before..a mother not acting “normal”, after her child dies. What is normal? What is typical?

In 2001, when we were told Haley was dying, I became completely hysterical. I was inconsolable.
In 2005, when she did die, I calmly thanked the nurses and walked out the door.
Of course, inside my brain was screaming, my heart was breaking, and it felt like it was all happening to someone else. I knew the tears would come, and they did, but it took awhile for the horrible shock of it all to wear off.
I wonder what the people who saw me that night thought?

If I have another significant loss, what will be my initial reaction? I have no idea. Grief is a very individual experience. And who gets to say which is the right way?

The prosecution wins 90% of all cases. Is it because they always get the right guy? Or because it is human nature for us to “judge” people by the way they act, look, and behave.
I would never want to be on a jury, for just that reason. I would never want to send to prison, an innocent person.
And if ever charged with a crime, I would not opt for a jury either.
A “jury of your peers” is a ridiculous assumption. My peers are white, middle aged, doctors wives, who have lost a child. My peers are Pro-Life, but anti-death penalty. My peers are moms who have both biological and adopted children.
Those are the only people who can judge, fairly, my reactions and emotions. I would ask for a judge instead.
I am, of course, not planning on committing a crime, but if Bruce ends up poisoned, they will use this journal against me, even though I didn’t do it!!!

Seriously, I am not planning to poison anyone.

Seriously.

Nobody else gets to leave this Earth before me.

So until next time, remember…

“We fix our eyes on not what is seen, but unseen. For what is seen is temporary, but what is unseen is eternal.” 2Corinthians 4:18

Cheryl

Sunday, January 14, 2007 11:41 AM CST

I saw on an episode of “House” the other night an intriguing topic. The patient was secretly in love with his brother’s fiancée. Every time the fiancée was near, the patient would have this stress thing that caused a near-death episode. (I didn’t say it was believable.)
The treatment was electro-shock therapy to erase the memories of this girl from his mind, so when he woke up, he didn’t even know her.
I found myself wondering if I would do that. Just erase the past. Erase the hurt. Wake up with a clean slate.
My husband said no, that your experiences make me the person I am. He said, you don’t dislike yourself as a person, you dislike how you feel.
I suppose that is true, but I wish sometimes I could just be “zapped” back to normal.

I wonder sometimes too, how long I should keep this website active. All I really write about these days is the minutiae of my life. But, this page feels like a link to Haley. It would be hard to say good-bye to it, and to the people who come here to support me.

So, on to the minutiae….

Cara (Corgi) had to have surgery this week. It looks like no puppies are in our future.
Cara, sadly, is barren.
And on that note, I need to paste here an entry from the summer of 2005.

Tuesday, July 26, 2005 2:04 AM CDT
We are leaving again very soon for the beach, but before we go, I have another beach story to share…
One day my friend Jennifer and I decided to do a little shopping on the island. There are about 4 stores on the island, so our choices were limited. We decided on ‘The Christmas Shoppe’. Seemed like a fun thing to do.
We were browsing, and some really pretty advent calendar houses caught our eye. We were discussing how I could fit 4 little gifts into the little windows of the calendar/house, when the lady came from behind the counter and entered (uninvited) our conversation.

Her: Four kids? Don’t you know when to stop?

Me: Well, two of them are adopted. (Why I felt the need to defend myself I will never know…if I want to give birth to 20 kids, that is my business)

Her: Oh, where did they come from?

Me: (Inching my way away from her) One from the US, the other from Guatemala.

So, she leaves us alone for a minute, we decide to each buy a house, and as she is ringing me up, she eavesdrops on the conversation I am now having with Jennifer.

Me: I am going to breed Cara for one litter of puppies.

Her: What?? Why don’t you go the the pound…don’t you know how many unwanted dogs are there?

Me: Well…I have children, I would like to know who the parents of the pups are, you know so I can be sure of the temperament of the dog.

Her: Oh, I guess that means you met the parents of your adopted children. After all, you would want to know if they were going to have bad temperaments.

Jennifer: Uh, we should get going…..

Me: Children are Different From Dogs!!!!!!!!!!

Her: Has she been in heat yet?

Me: (snarling a bit, at this point) Noo

Her: Well, maybe we will get lucky and she will be barren.

OH YES SHE DID…She wished barrenness on my poor dog.

Jennifer: (steering me a bit toward the door) We really better go…

Jennifer and I stared at each other for a minute outside, and then laughed so hard, we had tears. Don’t think I’ll be buying anymore Christmas stuff at the beach.

What an evil woman. Her wish came true!
Love, Cheryl

Monday, January 8, 2007 4:20 PM CST

I have taken NOT grocery shopping to a whole new level.

Who knew you could make a casserole out of a can of corn, half a bag of frozen French fries, and some cream of chicken soup?

Our pantry being officially bare, I braved shopping. I attacked it like an enemy. Nick and I drew up a battle plan.

Wal-Mart first.

Each of us gets a cart, and we split up. Nick takes his cart and fills it up with drinks.

Everything…bottled water, diet Dr Pepper, diet coke, Gatorade, juice boxes…etc

I, meanwhile, am zipping through the aisles buying non food items…cleaning supplies, paper towels, trash bags, books, kitchen rugs, new dog beds (Did I mention Cara is in heat?).

We meet at the checkout aisle, the Wal-Mart Warriors.

On to Food City.

Nick, with the debit card, to once again, fill a cart with drinks only (12 cartons of diet coke alone), he checks out, takes it to the car, and rejoins me, already in action, with a new cart.

As I get the usual stuff, Nick fills his cart with frozen food.
Two more carts, completely overflowing.
It was a thing of beauty.
I may even get 6 weeks out of this trip.

My children do wonder why they only get fresh food the week I shop.
But they don’t complain.

Life Lesson : Set the bar low, and Hamburger Helper becomes a feast. A birthday dinner, even!!!!

The Second Year

Is it worse? Is it better?

For me, it’s just different. A lot of the intense emotions of shock and pain have evolved into a more constant heartache.
Someone once said that getting back to life after losing a child, is like going to a party with a bad toothache. You can smile for awhile, but it is never without the background pain.

And I think I miss her even more. The longer it’s been since I have seen her, the more I want to hear her voice, or watch her play. I just miss everything.

I still find little that motivates me to leave the house, although we have been attending church again.

And somehow, we survive each day, just to start all over again……….

For those of you who asked, I am planning to post a picture of the portrait soon.

Love, Cheryl

Wednesday, December 27, 2006 10:49 PM CST

Here’s what I am thinking about today. I would call it my “Random Thoughts #4”, but all my entries seem to be random thoughts these days.

I am waiting for it to be 1:30 AM, so I can drive my 15 year old son to his high school to catch a 2:00 AM bus for Atlanta, to catch a 10:00AM plane to Pasadena, CA.
I never took trips like that in high school!

They, the band, are going to be playing at the Rose Bowl Parade. They are also going aboard the Queen Mary for a dance, staying at a 5 star hotel, going to Sea World, Universal Studios, and the San Diego zoo.

I go back and forth between thinking, “How cool! A once-in-a-lifetime experience” to “Seriously! These are children, not royalty!” Of course, voicing any kind of opposition in Kingsport against band activities is like mutiny. The band is the coolest thing going….and I can see why with trips like that.

The rumor is that 2009, Nick’s senior year, the powers-that-decide-these-things (Or as George Bush likes to call them, “The Deciders”, are considering two options. The Macy’s parade in NYC, or some competition in England.
We are thinking about trying to take all the kids and go with the band…..after mortgaging the house, of course.

Speaking of mortgaging the house, Bruce and I are considering, (Emphasis on considering) adopting again. Bruce is really all for it, he misses having a baby around. I am a little concerned about me being a little old to do the bottles and diapers again.
But, we are praying about it, and I know if this is something God is calling us to do, then it will be done. And I also know, from experience, that this child will bless us beyond words.
Bruce has such a heart for the children of the world, if he could bring them all home, I think he would. I think our purpose in life will always revolve around children whether we are parenting them, or helping through the foundation.

And speaking of purpose, Rick Warren has been all over the air waves recently. And I have to say, I just love him. I listen to him speak, and I think “Finally! A Christian spokesperson who actually speaks for the majority of us. A pastor with some common sense, someone who feels like Christianity is about compassion, not condemnation.”

His book has now sold 30 million copies, and is the best selling hardback book in history. Hmmm. Think God is blessing, not to mention ENDORSING, his work??.
He also reverse-tithes, meaning he gives 90% of his income to charity, while living on 10%.
(For anyone who may not know, Rick Warren is the author of “The Purpose Drive Life”.)

So, what else..let’s see……

The Foundation is doing well. It is a lot of work, and truthfully, I wish we had a few more volunteers, but, as with all things, it is growing at the pace it should, and it is in God’s hands. He is in control.
We are finished with our part of the CD, now we are just waiting for the production end of things, so…soon, soon….

I had this amazing, beautiful portrait done of Haley, from the last pictures ever taken of her. It is 16x20, and it captures her so well.
It is breathtaking and heartbreaking at the same time.
I haven’t decided where to hang it yet. The perfect place will come to me, I just have to wait for it.

As always, thank you for coming by, supporting me, loving us…it makes a difference.

Blessings,
Cheryl

Thursday, December 21, 2006 8:43 PM CST

Tonight while watching the new game show “Identity”, the following conversation was overheard at the Vincent household.

Bruce: “Hey, why don’t you get one of those schoolgirl outfits?”
The schoolgirl he is referring to is one of the “identity” people. She is wearing a mini skirt, a belly shirt, and knee high socks. Did I mention Kendall (our 7 year old) is sitting between us as he makes this incredibly inappropriate comment.

Kendall: “Why would she want to do that?”

Bruce (laughing): “Don’t you think mommy should hang out around the house in one of those outfits.”

Kendall: “That’s disgusting.”

Uh…excuse me?? “Disgusting” is a bit harsh.

Bruce (laughing harder) “Why is that disgusting?”

Kendall: “Because we’ll see her hairy legs.”

WHAT!!!?????

Bruce is practically wetting himself, and I find myself in the position of pulling up my pant legs to prove to everyone I DO NOT have hairy legs.
At least, not THAT bad……I mean, it is winter…everybody slacks off a bit in winter.

We have been wanting to let our Corgi, Cara, have a litter of puppies. But, she hasn’t been in heat for a year. Well, the vet looked at her external female parts, and said she was in a “pre-heat” cycle.
Well, she’s looked like that for a year.
So, he said, “Well, that’s not normal.” And to be honest, I THOUGHT something wasn’t right…down there.
To make a long story PMS’ing for a YEAR! No wonder she is such a b***h!

I though she was just cranky.

So, she has to have blood work next week, and may need to take hormones.

Speaking of dogs, our other dog, Kelly (border collie), ate ½ a FROZEN casserole off the kitchen counter. She ate the tin foil, the tape I had on it, she even ate the pink post-it with the cooking directions on it.

I had to go the mall tonight, proving that if you put it off long enough, even online stores won’t guarantee Christmas delivery.
It was a mob scene, and as I was waiting to get some presents wrapped, some man behind me, told the wrapping girls….could they take him now, HE was in a hurry. I looked at him, and barked, “GO…PLEASE..just GO, I will wait!” He looked at me like he was a little scared, but he butted his way ahead of me.

He should have been scared.
Nobody knows when my anger will unleash…or my grief, which is all tangled up together, and it isn’t pretty.

I could have told him how *I* was in a hurry, because the mall is full of painful memories. I could have told him how bad my feet hurt because of this weird nerve thing I have and the only time I am pain free is when I am barefoot.
I could have told him my back hurt, my feet hurt, and I wanted to go home. I could have told him how lucky he was to have his little girl next to him, and to slow down, and enjoy her.

I could have told him that he was rude, and self centered.

But, I swallowed all of that, and tried to remind myself that it is Christmas….Good will to Men….love your enemies…all of that. And I settled for those few words in an unfriendly tone.
And you know what, all I did was make myself feel bad. For saying anything at all. I should have turned the other cheek, and let it go.
It didn’t help me feel better by trying to make him feel worse. I am sure there is a life lesson in there for me somewhere.

To honor Haley this year, we will hang her stocking as usual, and Christmas Eve, we are all going to write her letters. We will put them in her stocking, and after Christmas, pack them away, unread, until next year. Next year, we will read them and write new ones for the next year.

I was looking at our Christmas tree the other day, and I wondered what Christmas is like in Heaven.
I wonder if they have trees.
I think they do. Beautiful trees.
And beautiful girls.
That’s what Heaven has.

I hope you all have a blessed Christmas, and remember…..
“Today in the town of David, a Savior has been born, to you; He is Christ The Lord.”
Luke 2:11

Cheryl

Friday, December 15, 2006 1:59 PM CST

This was a hard weekend for me. I am sure part of it is being in the middle of the holiday season.
But, at the risk of beating a dead horse, I find (again) myself in the position of having to defend my grief. My right to grieve.

My right to still be sad, even though this is the 2nd Christmas. Apparently, I am only allowed to “ruin” other peoples Christmas with my sadness once.

And I want to shake these people, and yell, “How can you NOT get it? Don’t you understand what a treasure I have lost! Don’t you MISS her? How can you have so little compassion for us?”

And then I get online or open my mailbox, and the love and compassion of strangers overwhelms me. How is it that these people appreciate Haley so much more than some of the people who were closest to her.

Tonight in the mail, I got one of those letters of love.
From a 17 year old child…. The compassion I have sought so recently, from a young girl named Laura.

Laura reminds me of Haley. That is the best compliment I can give. Haley knew what was important in life. Showing love to others. Small kindnesses. Welcoming those who are different.

Opening your heart. Loving God. She knew it wasn’t about who you knew, or what you wore. She, like Laura, was wise beyond her years.

Laura – We are all born with spiritual gifts. I believe that yours is the Gift of Compassion. It may not always seem like a gift, as those who feel for others feel their pain, but it IS a gift….and a responsibility.

How lucky you are to have discovered so young what you are made for. And how very proud your parents must be. Thank you for the gift of a piece of your heart, for Haley.

This is Laura’s letter to me, I have edited out personal information, but the content is the same.

“I do not find it possible to truly express to you in words the imprint that Haley has left on my heart, but I will certainly try. On Christmas Eve, about two years ago, I stumbled across the organization “Make A Child Smile”, and my life was forever changed. The strength and the faith of the children and their families featured on the website astounded me and moved mt to do everything in my power to bring a smile to the faces of these children.

I would like to believe that since that night I have made a difference. I have started a club in my high school dedicated to the work of the organization, and together, we have sent hundreds of packages full of toys, CD’s, coloring books, and, most importantly, words of hope.

Although it was over a year ago, I remember the night I first read Haley’s story as if it was yesterday. After reading about her brave fight, I listened to the three songs featured on the website.
I sat at my computer and tears streamed down my face. I could not comprehend how such a young girl, who was going through so much, could find the grace of God, and reach out to others in such a unique and special way.
Since then, I have re-read Haley’s story many times in search of inspiration, and every time I am amazed. A smile is brought to my face as an eleven year old reminds me how loved I am by God.

When I stumbled upon the website for, “The Haley Vincent Foundation”, and found three new songs. I felt blessed beyond words. Haley’s song, “Everywhere” has gotten me through some of the hardest times in my life, and I am thankful for that every day.

I wish that you could understand the extent of how thankful I am for your family. You have brought a wonderful daughter into the world, and she is someone I strive to be like each day God blesses me with. You did something even more spectacular when you let her go home to God.
The memory of her is something that I am certain will never disappear, not only in your hearts, but in the heart of ever person she has touched.
I hope that I have helped you to realize how loved she is countless strangers all over the world, just like me.”

Yes, Laura, it helps. Thank you.

Ok everybody. Laura has told us what she is doing. What are YOU doing?
Find your place, and lets make this world a better place.

Blessings,
Cheryl

Wednesday, December 13, 2006 5:52 PM CST

I am sitting here, procrastinating addressing Christmas cards. Funny, it seemed easier last year, but I know it wasn’t.

My computer is home, but my last update is still on some backed up file that I can’t find right now, which is a shame, because I really want to tell you about this special girl who wrote to me. Hopefully, my teenage son can help unlock the mysteries of the computer, and retrieve it, so I can post it soon.
And on that topic, I don’t have any of my links anymore, so if you visit the guestbook, leave your link.

My counselor asked me today how my week had been. I told her I had walked on the treadmill twice AND gone to church. She was suitably impressed.
I didn’t, however, tell her about the day I ate nothing but chocolate donuts….or the day I watched HOURS of season three of the O.C…..or that one day, I just pretty much stayed in bed. It just didn’t come up.

The song, (A Voice Above The Crowd), that our friends wrote and recorded for Haley is finished. . I am going to try and get it on the foundation website in the next couple of weeks. It is so beautiful…and it means we are finally ready to start producing the CD’s! I would be happy to email it to anyone in the meantime. Just be warned, it is a big file…and you will need Kleenex.
The Foundation is doing really well. We are getting lots of referrals, and we are working on keeping it all straight.
One of our local churches is sending out Christmas boxes to a lot of the kids, last count was around 45.

I spoke with Haley’s doctor last week about the Foundation, and about making a gift to the hospital. He suggested combining her two loves…Music and God, and doing something with the chaplaincy. I thought that was brilliant. I can’t believe I didn’t think of it myself. Of course, we still need a specific idea…so feel free to throw them out there.

Well, this isn’t too exciting…..sorry, I really need that other update…maybe this week.

Bye for now,
Cheryl

Wednesday, December 6, 2006 7:39 PM CST

SUNDAY 10th
Updated to add:

Check out: www.castingcrowns.com On the main page they posted under "share your lifesongs" something written about Haley. There is more to this story to come...

~~~~~~~~~~~~~~~~~~~~~~~~

previous update

I had an update all ready about compassion. Seems like I’ve been thinking about that a lot lately. But….THAT update is on my laptop, which is in the shop.
So, I am “slumming” in the bonus room on the kids computer…..which makes me thankful for my laptop.
I have to actually sit upright in a chair to use this one….so, please, note my sacrifice.

I have been thinking about Mary a lot.

THE Mary.

Of how it must have been for her. She was just a child herself, she must have been so scared. Of everything that was happening to her. This was just a normal girl. Who showed enormous courage and strength. Of course, God knew she was the right girl. But, that didn’t ease her suffering. She still endured childbirth in a dirty barn.
And then, what responsibility!
To be parenting the son of God.
Do you ever wonder what Jesus was like as a two year-old?
Although obviously special, I think, in Mary’s eyes, He was just her little boy. Probably one of several children she and Joseph went on to have.

And then, He is brutally beaten and killed. In front of her eyes.
I can imagine her never leaving her son’s side during the hours he was dying. Which one of us would leave our child, no matter how hard it was to watch?
Her pain, her grief, her sense of outrage and injustice.

How many nights did she watch, in her own mind, his death over and over again.

Did He tell her it would happen? Or was she surprised and horrified, as the death sentence was carried out?

Even as the resurrection took place, and she KNEW he was going to Heaven, and live and rule….she still had to be sad. Because she was human. And Jesus was her son.

I hope when I get to Heaven, I get the chance to meet Mary. What a remarkable woman she must have been.

After Haley died, some people played the “It could have been worse…” Or “you are lucky to have other children” Or “At least you know where she is, think of all the parents of missing children” game.

A word of advice.
That is not a fun game for anyone. If you are even THINKING about saying one of those things…….don’t.
But, like many things, I AM allowed to say those things.

And tonight, while I am thinking about another mother who lost a child, I think it could have been worse.

At least I didn’t have to watch her be crucified.

So, before we complain about the “stress” of the season, remember WHY we celebrate.
Because of the Christ child.
No matter what the media tries to say, the truth is simple.

It is always simple.

Christmas is about Christ.

In His Love,
Cheryl

Thursday, November 30, 2006 10:22 PM CST

We went for Christmas card pictures, one of the traditions we paste a smile on and GO.
The lady asked, “How many children?”
She never saw the dagger that pierced my heart.
I bit my lip hard, to stop the threatening tears and said, “Three”.
I was amazed that my voice sounded normal, because the true heart of my brain was screaming, “NO, THAT’S WRONG! WE HAVE FOUR CHILDREN!! CAN’T YOU SEE THAT?” Don’t you see the huge whole in our family?” Don’t you see the sign on my forehead “Grieving mom?” It’s there. I am sure of it.

When we got home, a family member called and said, “We decorated our house.” She then said “Last year…..was…..last year, and we didn’t put up anything.”
I applaud her desire to be festive for the holidays.

Believe me, I wish I had the desire to decorate. I wish I had the desire to get up in the mornings.
But I disagree with this Christmas being any better than last years.

Christmas will be every bit as painful as it was last year.

Today was painful.
Yesterday was painful.
Tomorrow will be painful.

I really don’t want to update with the same old sad, depressed entries all the time.
But, it is hard to do that when you ARE sad and depressed all the time.

Last Christmas was incredibly painful, I enjoyed watching the kids excitement, but it was tainted, as always, with what should been.

This Christmas will be no better. In fact, it’s worse, because other people think it’s better.
That we want to go to Christmas parties, concerts, services….it was understood last year, but this year…..”Aren’t you coming over to see my tree?” I don’t even want to look ay my OWN tree.

I don’t even want a tree.
Or presents.
I just want Haley.
It is the only thing that will ever heal my heart.

I am tired of grieving.
I am tired of having no energy.
I am tired of crying.
I am tired of pretending. I have to pretend a lot.

All the things taken from us. Even Christmas.

Sunday, November 26, 2006 3:21 PM CST

Well, here we are at the beach, and the little surprises have started early.
I, as most of you know, have been quite apprehensive about being here, at the beach, for the first time since Haley died.

First surprise: no internet! not even dial up. Now, I'm not going to lie to you...that one hurt.

You see, the beach was a special and healing place for our family.
We came here, and no shop talk allowed. Other than morning/evening meds/ and putting out the occasional medical fire, we stuck to normal things like collecting and painting rocks we found, long walks on the beach, sand castles.
Puzzles. Lots of easy dinners...hot dogs, hamburgers, steaks, eggs and bacon.

To help me heal, we chose a different beach.
We always used to go to Jekyll Island, and I WILL go back there some day, but every inch of beach, sidewalk, gift shops, we have explored together.
I can't look at the same box of rocks she poured through finding there perfect ones to bring home. She loved those pretty rocks.

Our new beach is in N.C. instead of GA. Our new beach doesn't have gift shops, thankfully.
Instead it has the tiniest little grocery store ever with an attached ice cream parlor.

It is named:

Wait for it:

It'll be worth it...

HALEY'S ICE CREAM STORE!!!

Of all the beach towns we threw darts at trying to decide, how very funny we ended up at this one.

The beach house itself is incredible, the nicest one we have stayed in yet. Windows everywhere and views everywhere!
We can sit on our couch, with the football game on, and still see our kids playing on the beach. It is incredible.

Logan has asked me lately if it is time to get another child for our house. We need four, he says, another girl.
I asked him if he would like that and he said yes, not only would he like it, he is looking forward to seeing WHO God has in store for us next.
It made me laugh. Most families don't think you just go out and "GET"¨ a kid every few years...but that seems to be what Logan thinks.

Sunday
Our first whole day. I took a long walk and hurt my foot. The kids built a sandcastle, Perfect weather for us this time of year. High 60.

Monday
Bruce walked two hours. No sandcastles today, too cold. I went to grocery store and stocked up.
Watched TV, read books.
The insomnia bug has a hold of me and I'm writing at 2am, we can walk off any porch here and look at magnificent views.

The ocean has always been so overwhelming to me. So vast and beautiful. And all the life it holds. I feel close to God at the beach, I always have.

Tuesday
The foot pain persists. My husband-doctor told me I have a neuroma, which is a nerve irritation caused by compression...so the tighter the shoes, the worse the pain.
And all I brought were tennis shoes. I tried walking barefoot, and while I had no pain, my feet went numb from the cold :).
Our friends got here around midnight or so. We are glad to have them here!

Wednesday
I tried to walk again today...and the pain about brought me to my knees. Those neuromas are apparently nothing to mess around with.
But, Haley and/or God gave me my 2nd sign today...a Dolphin.
I had never seen a dolphin at the beach before, but Haley had.
The very last time we were at Jekyll, she and her daddy had a dolphin stay with them, while they were walking, jumping, all the way down the beach.

Later that day, Bruce took Haley to a gift shop, where she agonized over the perfect gift for me. She brought me back two ceramic dolphins, I treasure them. And now, I have SEEN a dolphin!

Thursday
I took a long walk today; I wore (non-compressing) clogs. The good news is I got a 45 min walk in. The bad news is my feet hurt after, and I think it involves the nerves of both feet. We ate spaghetti, and I went to bed at 8:30. I can practice avoidance, even at the beach.

Friday
Today it was warm enough for me to walk bare footed. I discovered it does not hurt at all to walk barefoot. The good news is the diagnosis is made; the bad news is the treatment involves putting a big needle in the bottom of my foot. Ick.

More important than my feet, I did a lot of thinking. A lot of thinking. I remembered every single summer we rented a beach house, starting with 2001.

2001 The One Where We Were Stunned

We were shell shocked. Our previously healthy child, the one so intensely beautiful and gifted child had a serious physical flaw.
One that could kill her. We all pretended she was going to be fine, and aside from steroid cheeks, she acted that way. She ran and played alongside the other kids.
That is when she, too, fell in love with the beach. It was a place to get well. A safe haven.

2002 The One With The Arthralgias

Still pretty well this year. On the lowest doses of meds she would ever be on, but the joint pain had begun.
We carried, and used, extra steroids and pain pills this summer. But, she still turned her cartwheels and hunted for sea shells.

2003 The One Where We Found Out What Courage Meant

The week we had rented the house for, we spent in the PICU.
We were able to reschedule for the end of August, but we carried her illness with her.
She had had a rockin case of Shingles (Unbelievable pain!). Besides the pain, it shut down her bladder, so I had to straight cath her every 8 hours, and yes, that is as unpleasant as it sounds.
But as always, Haley was a trooper. She also had a damaged nerve that gave her "foot drop"¨ so she was quite unsteady and needed lots of help.
So, that was the summer she began painting seashells, doing jigsaw puzzles, and a million ways to enjoy the beach with a bum foot, and an amazing spirit.

2004 The One Where She Was LISTED

That year we took the "liver beeper" with us, in case we got "the call"¨.

This was also the year that her hands and feet just started splitting open for no apparent reason.
Not much fun with the salt water. So, once again, it was mostly puzzles, paintings, and her new hobby...shopping.
She discovered the four or five gift shops with gusto. And we went shopping every day.
One day she took her dad because she wanted to buy me a gift. She came back with the ceramic dolphins I mentioned before.

2005 The One That Was To Be The Last

For the first time, we did two beach weeks....it had been such a hard year, our family had spent so much time apart, and I wanted two vacations.
It was difficult for her to walk much distance. She would become short of breath with any real exertion.
So, we played in puddles with crab nets, she loved searching for crabs, and scooping them up.
We spent hours collecting, and then painting shells, we built some of the best sand castles ever.
She actually did the work, I mostly sat in my beach chair watching her, worrying about her, loving her.

One night Bruce drove her to the other side of the island to watch the sunset...she wanted me to come, but I was busy with some little thing and didn't want to drive somewhere.
They came back, and she had such joy on her face. It made me smile to see her so happy.
And she said, "You HAVE to come tomorrow mom, its beautiful!"¨
It occurred to me that she had never seen a real sunset before. Tomorrow it rained. And the next day we headed back to Kingsport. The last time we would ever be on that beach as a whole family again.

From THIS beach, you can see the ocean, and the sunset from the front deck. I think about how much Haley would have loved this house.

This one is for you, my sweet angel...I will always wish I had gone with you and we had experienced that first sunset together

Thursday, November 21, 2006 9:37 AM CST
Here are some photos from Haley's Party at the hospital.

Some of the toys we donated!

(from left to right) Jen, Mindy, Grandma Pat, Lisa, Nick, Kendall, Cheryl, Steven, Logan

sweet precious, enjoying the party

It felt so good to help, even if it was just one day.

sick can come in all sizes... but they all deserve a smile

Nick and Kendall.... helping the children

The party was an amazing tribute to an amazing little Girl. Happy Birthday Haley...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
update from Nov 16th

I spend a lot of time and energy running away and hiding from my grief. And all the books says DON’T do this….they say meet the pain head on…experience it…it’s the only way to get through it. All I can say is…..Easier said than done.

I prefer to spend my time in all different forms of distraction and avoidance….TV, books, computer, sleeping, drugs, ….If I could only channel that into something good, like laundry.

<><><><><><><><><><><><><><><><><><><><><><><><><><><><><><><>
I am reading this series of books by Randy Alcorn, the man who wrote “Heaven”. He writes these Christian fiction books that are amazing. I am almost obsessed with these books. I want EVERYONE to read them…whether they want to or not!!

This is an excerpt…a man who has just lost his sister and 7 year old niece is talking to God.

“I thought you just gave the best to your children. All I wanted was a home in the country where I could enjoy my wife and kids and my sister and her kids, and they could be safe. Was that asking too much? Were my dreams too big for you, was that it?”

In another place, the rough, eternally scarred hands of a carpenter reached out toward one who pushed them away. No stranger to suffering, he heard the man’s words being spoken in the universe.
“No, my son. This is not the time. That is not the place. Your dreams were not too big for me. They were too small.”

<><<<><<><<><><><><<><<><><<<><><><<><<<<<><><><><><><<><<><><>

I don’t think that ANYONE who has lost a child has ever NOT questioned God. Why? Why a child? Why me? Why her? Why him?
It’ almost impossible to believe that something so devastating, something so WRONG, something so tragic could actually bring glory to God. Or that anything good could ever come out of it. The humanity in us, the mom in us, rebel against that idea. We don’t want to be part of a greater plan. We want our child back. We feel like it is too hard, it is way too much to ask…to give back what we have loved best. It’s unnatural.

So, we try to cope, the best way we can…..TV, books, computer, sleeping, drugs….whatever helps. Whatever gets us through our days.

<><><><><><><><><><><><><><><><><><><><><><><><><><><><><><><>

Recently, two babies have died while waiting for liver transplants. Thousands of people, including children, wait on these lists for donor organs. The demand outweighs the supply by tens of thousands. Be an organ donor. Talk to your family. There is a real crisis going on here that few people talk about.

So, we are going to the beach Saturday for the Thanksgiving week. I am a little nervous. The beach was so special for Haley and I. And Thanksgiving last year was a nightmare!
The holidays are rough, even the second time around. I miss her SO much. I just miss her.

Missing my baby,
Cheryl

Thursday, November 16, 2006 9:36 AM CST

I spend a lot of time and energy running away and hiding from my grief. And all the books says DON’T do this….they say meet the pain head on…experience it…it’s the only way to get through it. All I can say is…..Easier said than done.

I prefer to spend my time in all different forms of distraction and avoidance….TV, books, computer, sleeping, drugs, ….If I could only channel that into something good, like laundry.

<><><><><><><><><><><><><><><><><><><><><><><><><><><><><><><>
I am reading this series of books by Randy Alcorn, the man who wrote “Heaven”. He writes these Christian fiction books that are amazing. I am almost obsessed with these books. I want EVERYONE to read them…whether they want to or not!!

This is an excerpt…a man who has just lost his sister and 7 year old niece is talking to God.
“I thought you just gave the best to your children. All I wanted was a home in the country where I could enjoy my wife and kids and my sister and her kids, and they could be safe. Was that asking too much? Were my dreams too big for you, was that it?”

In another place, the rough, eternally scarred hands of a carpenter reached out toward one who pushed them away. No stranger to suffering, he heard the man’s words being spoken in the universe.
“No, my son. This is not the time. That is not the place. Your dreams were not too big for me. They were too small.”

<><<<><<><<><><><><<><<><><<<><><><<><<<<<><><><><><><<><<><><>

I don’t think that ANYONE who has lost a child has ever NOT questioned God. Why? Why a child? Why me? Why her? Why him?
It’ almost impossible to believe that something so devastating, something so WRONG, something so tragic could actually bring glory to God. Or that anything good could ever come out of it. The humanity in us, the mom in us, rebel against that idea. We don’t want to be part of a greater plan. We want our child back. We feel like it is too hard, it is way too much to ask…to give back what we have loved best. It’s unnatural.

So, we try to cope, the best way we can…..TV, books, computer, sleeping, drugs….whatever helps. Whatever gets us through our days.

<><><><><><><><><><><><><><><><><><><><><><><><><><><><><><><>

Recently, two babies have died while waiting for liver transplants. Thousands of people, including children, wait on these lists for donor organs. The demand outweighs the supply by tens of thousands. Be an organ donor. Talk to your family. There is a real crisis going on here that few people talk about.

So, we are going to the beach Saturday for the Thanksgiving week. I am a little nervous. The beach was so special for Haley and I. And Thanksgiving last year was a nightmare!
The holidays are rough, even the second time around. I miss her SO much. I just miss her.

Missing my baby,
Cheryl

Saturday, November 11, 2006 2:55 PM CST

As I said before, the Atlanta party hosted by the foundation went really well.
There were 40 or so kids there who enjoyed painting, beach music, snacks, and gifts. The more we do, the more needs become known to us. Sometimes it feels overwhelmimg just how many children are out there…hurting….but, I have to remind myself of our motto…”Helping…One Child at a Time”. And we are definitely helping.

I am surrounded by such good people also. I was really proud of my own kids this weekend, watching them trying to help the hospital kids paint and pick out gifts. I forget sometimes how good they really are, they just know they are lucky to be healthy and have real empathy for these kids and their families.

I have been sick with a cold recently. So, a better update next time….for now, back to bed with me!!

Just for fun…I am watching 24 on DVD…what are you guys watching these days?
The best new show no one is watching? “Friday night lights”.

See you,
Cheryl

Thursday, November 9, 2006 10:55 AM CST

Today, another more talented writer, has written my journal entry for me.
It is actually her journal, but she took the words from my heart.

As the mother of a child…a precious, remarkable child, who died waiting for a liver transplant, I applaud her entry. And I ask all of you to go read it, and say special prayers for Jackson and Dillon and their families.

The Wait and The Wonder

To Moreena – I am too dumb to figure out how to sign that blog guestbook…..but thank you for using your talent and your audience so wisely and generously.

“Whoever is thirsty, let him come; and whoever wishes, let him take the free gift of the water of life.” Revelation 22:17

Sunday, November 5, 2006 10:12 PM CST

We just, moments ago, got home from Atlanta…..and I feel compelled to get this post in while it is still Haley’s birthday. Like she doesn’t know…..

AS IF she doesn’t know she has been on my mind every minute, and in my heart every second of today.

AS IF she didn’t know that none of this would have happened today, without her inspiration, her example.

AS IF she needs me to say “Happy Birthday” to her, when she is celebrating her new birth in Heaven EVERY day.

But, I guess I needed to say it. I needed to remember that 13 years ago today, I brought a living, breathing angel into this world. And for 11 years and 11 months, she brought pure joy into my life.

And I guess, I needed to have a small, intimate memorial for her in the Hospital Garden. I didn’t even know I needed that. But my friends did. And they brought balloons to release, and Lisa said the most beautiful prayer that I will remember forever. Funny, how I didn’t know I needed that. And yet, it was the most beautiful part of the day.

I used to worry that people would forget Haley, but as I watched the people she touched, who have known and loved her, come together today, I realized something important. They all have a bit of Haley in their hearts. An imprint. Not only will they not forget, I believe those little pieces will grow bigger and brighter as time passes.

And this world will be a better place, because once a little girl was here, who made a difference.

Happy Birthday, sweet girl.
Mom

PS Stay tuned for pictures from the big Atlanta party!

Wednesday, November 1, 2006 10:16 PM CST

This Sunday, Nov.5, 2006, would have been…should have been…. Haley’s 13th birthday. A teenager at last. She would have loved that, she even liked being called a “tween”.

We have decided, through Haley’s Foundation, we will be hosting a beach luau at Egleston Children’s Hospital in Atlanta to honor Haley’s birthday. She will be with us that day, and she will be proud.

Thanks to the generosity of the people who knew and loved Haley, we have collected over 300 toys.
The good news is we have 300 toys!! The bad news is our need will never end.

Just this week, another hospital, Hughes Spaulding Children’s asked to be added to our program. They said they have many children from low income homes with lots of needs.

So, while in Atlanta, we will be dropping off around 50 new toys to Hughes Spaulding. For many of these children, it will be the first new thing they have received in a very long time.

So, my friends, my volunteers, my donors, all my want-to-help people, you are humble people, but take a second to be proud. Bask, for just a second, in changing the course of a child’s day. Good for you. And THANK YOU!!!!!!!!!!!!!!!!!!!

The party itself will have beach decorations, beach music, beach treat bags, snack and drink, a craft table, where we will paint poster size paintings to decorate their rooms, a games table, where we will play games with them, and lastly, a table where they can choose a toy to keep.

Our purpose is to remember Haley’s generosity, while glorifying God by sharing our love for His children.

We will have crazy meetings all day Saturday trying to get this together, party Sunday, and drive home Sunday night. Whew!

I hope when we return late Sunday evening I won’t be too tired to write a birthday tribute to my daughter. She deserves it. I love and miss her so very much. Every single day.

In the meantime, I need to go help fulfill my purpose in life….continuing what Haley started.

I’ll have my cell phone. If you are in or around Atlanta, feel like pitching in or just chatting, call me……and if you can’t call, please pray…this is difficult for me; I have a lot of memories of this hospital, and this town. I get weepy very easily. :)

We will be at The Holiday Inn (N. Druid Hills).
A big thank you and hugs and kisses to Lisa for driving up from Florida to help. I love you!!
And to my mom, the energizer bunny..she makes me tired.

AND, my dad’s surgery went well, so now we can start praying for physical comfort post op. Thank you, my prayer warriors.

Talk to you soon, hopefully Sunday.

Many prayers to you all who read this. May it bless you.

“The Lord is my shepherd, I shall not want….” Psalm: 23

I shall NOT want…He has supplied all my needs!!

Cheryl

Monday, October 30, 2006 5:48 AM CST

I had an emotionally disturbing week last week, BUT I am going to spare you that too-real-life update, because this story is to good to keep.

It started a few weeks ago, Bruce was putting hardwood floors in Kendall’s room, when he found, inside the closet, a perfectly circular hidey hole. And inside the hidey hole was a vial with white powder in it
.
Now, what do you do with something that appears to be an illegal substance in your home. How many times have I heard on “Cops”, “If it’s in your house/car/trailer it belongs to you…and YOU are the one going to jail.” I would not do well in jail. I don’t even do that great in my comfy home, with TV and chocolate readily available….not to mention my own bathroom.

We made sure to tell all our friends (one) who are cops, just in case there was a middle of the night raid in my suburban neighborhood. (Hey, I’ve seen ‘Weeds’…I get Showtime…It could happen)

So there it sits.

Then, at 8:15am (What an hour…could have been the middle of the night for me…I homeschool…we start at the reasonable hour of 10:00am) a persistent ringing of the doorbell. I knew whoever it was, wasn’t going away. So, I answer the door, in my pajamas, and there thrust in my face….a BADGE. A police badge. AND a gun. And a flak jacket. This man had on a bullet proof vest!!!

Turns out he is a United States Marshall, and he shows me an 8x11 color mugshot, asks if I have ever seen this guy, and says this address (MY ADDRESS) is this felons last known address. (Here is where I feel the need to tell you, we didn’t buy and fix up a crack house…I live in a traditional 2 story suburban house in the epitome of suburban neighborhoods)

As I am talking to Rambo (That is honest-to-heavens his last name, I have his business card on my refrigerator, just to prove THAT little tidbit of the story)
I, immediately tell him I have drugs in the house. I cracked like an egg. Career criminal, I am not. Curiously, he was unimpressed with my little find…told me to just throw it away, which I did.

Okay, so anyway, Rambo and I are talking and four more marshals appear…two from each side of my house. They were casing my house!! I don’t know if they were thinking someone may run out the back door, or if they were peeking in windows or what.

My personal theory is they were checking a shed and 3rd garage we have in the back.
Then, quick as they came, they all piled back in this unmarked white station wagon, and off they go. They did call Bruce at work to ask him some questions too.

I never know what the perp (as we like to call them) did, except it was a felony, and he was on the run.

We went from barely locking doors to setting our house alarm EVERY night. I even set it at home after everyone leaves.

Locked in (but, not locked UP),
Cheryl

Thursday, October 26, 2006 1:21 PM CDT

I must seem, to the readers of this journal, to have a split personality disorder…or manic depression at the very least.
Funny dog stories one day…the depths of despair the next.

But, that is how life, for us anyway, really is. I noticed I was smiling at something on TV, even as the tears I had been shedding were still wet on my face.

Some days are definitely worse than others. Some days….well, they’re just worse than others.

As I alluded to on “dog day”, there was stuff leading up to the major meltdown that I like to call…uh…Wednesday. And I’ll share it, as I think it’s important. But before that, life continues, and that means there are stories to be told.

So, a hint for next time….and keep it in mind…

“Rambo”

Thank you for your prayers…they kept me breathing…

Love,
Cheryl

Wednesday, October 25, 2006 12:35 AM CDT

Please pray for me today, my friends.

Some days are just impossibly hard.

Today, I realized that I died when Haley died.

I just never stopped breathing.

Friday, October 20, 2006 2:53 PM CDT
Our Dogs
I could write a book about the misadventures of our two dogs. Talk about personality! And I don’t mean that in the usual friendly, happy-go-lucky..I’m-happy-when-you’re-happy *good* dog sense.
We have two dogs. Kelly and Cara. We got them both at the same time, as puppies. They are now 2 years old.
Kelly is a border collie. All I knew about border collies before I owned one was they were smart and could catch a mean Frisbee. For the record, Kelly has NEVER caught a Frisbee. I also knew they were herding dogs. Kelly is TERRIFIED of cows. If we walk by a pasture where a cow is 50 yards away, she will A.)tie us both up in her leash trying to get away from it, or B.) lie in the middle of the road on her back in an act of complete submission to the cow, who, by the way, is grazing contentedly, and has no idea this dog even exists.
But, she is smart. The trouble is, she is too smart to be a dog, yet too stupid to be a human.
We have a box in our pantry where I keep snacks of all kinds. Kelly can go in there, take out a snack, bring it into the family roon, unwrap it, and eat it, and the only evicence I have is the empty wrapper. In fact, I blamed it on the kids for months…..”Well, If YOU didn’t leave it here…Who did?? The DOG????”
It was only after catching her in the act that I realized it WAS the dog.
Right now, we have popcorn balls in there, and Kelly brought one into the family room. Instead of taking it from her, I decided to watch. She carefully unwrapped it, and then tried to eat it. First the ball was stuck to her mouth, then as she used one paw, it would stick there, then stick back on her mouth, then back to her foot. I was laughing out loud as this popcorn ball was hanging from her paw, and she would swat at it and get it stuck to the other paw…and on and on…she actually did manage to eat it though.
Then last night, I was loading the dishwasher and Kelly was, as always, underfoot, trying to lick the dirty plates. I walked to the other side of the kitchen, and hear this horrendous noise. Kelly has her head stuck in the dishwasher rack. In her panic, she has lifted the (full of dishes) rack completely from the dishwasher and is swinging it around. It was a sight to behold. It was like she had the strength of 10 elephants in wrestling that thing. She did get it lose, after smashing several of my plates. I, during the racket that brought my entire family running, am completely frozen in place. Kelly is cowering as if the dishwasher attacked HER.
The dishwasher is now broken. She ripped all of the screws out of place, and in trying to fix it, Bruce broke the door. So, I am washing dishes by hand. Thanks, Kelly.

Cara, who has been labeled *my* dog, especially when she is bad, is a Corgi. She is so loyal and protective. She growls deep in her throat every time Kelly walks by me. Which is hilarious, because Cara is tiny, by Corgi standards, at about 13 lbs, and Kelly is a big dog at 70lbs. But, Cara is in CHARGE.
Her biggest problem is chewing. She chews constantly, on everything. It is like a compulsion.
I try and keep bones everywhere in our house, but if no bone is handy, she will chew up clothes, toys, pens, books, boxes, paper, glasses (expensive!), she has even chewed up the side of our nightstand.
Right now, I am (very slowly) reading a paperback book, that Cara has been gmawing on. At first, it was just a little chewed on…Now it is actually a race to see who will (literally) finish it first. She has eaten both covers, the bottom, and all the way to page 70. That cannot be normal.
But, I love my dogs…..luckily for them.

Wednesday, October 18, 2006 8:10 PM CDT

Hello, my friends.

After my last two, more light-hearted, updates, I got a lot of feedback saying I seem "better".
And, my first instinct was to immediately scream from the rooftops, "NO"! I am not better.
And, so of course, being me, I then had to wonder..Why? Why am I so uncomfortable with someone telling me I seem "better".
Does it make my loss less valid? Does it mean I didn't love my daughter enough?
Because the truth is, I AM better. Not ALL better. But...better. Better that this time last year, when I wasn't eating, sleeping, or showering.
Better than 6 months ago, when I was sobbing in a closet.
Better than when I cried myself to sleep every night, begging God not to ever let me wake up.

But to admit that, feels wrong on so many levels.

First, it isn't so black and white. On any given day, I COULD be in the closet if I wanted to. I can bring myself to tears in 5 seconds flat, just by remembering one word, or one smile. I could cry for hours if I decided to look at her things, or listen to her songs.
I can conjure up any minute of the day she died, and feel that complete devastation all over again.

The difference is, I think, that as time passes, it isn't always right there at the surface. Most of the time, I can shove it back and do what I need to do.
And for right now, all that really means, is taking care of my family, myself, and the Foundation. I still don't do SO much! I don't drive into town much. I still put off the grocery store until my kids are BEGGING for food.
I don't like to go out to eat, or go to the mall, I haven't been to a movie, or watched "our" TV shows.
I don't listen to her music, take out photo albums, or go through her things.

Most days, I feel like I am hanging on by my fingernails.
I still take antidepressants and medication to sleep.
Going to church remains difficult.

So, what does all that mean? I don't know. I haven't walked this road before. I have no idea what to expect around each corner.

But, this I DO know.
I know that my faith is the key to moving forward.
I believe in God.
I believe in Heaven.
And I believe this separation from my sweet girl, is temporary.
But for a season. Just a season.

For whatever reason, I was chosen to be Haley's mom. I was chosen to be Nick, Logan, and Kendall's mom. I was chosen to be Bruce's wife. And, I CHOOSE to be a child of God.

My life has purpose. I may not always know what it is. I know I am not always obedient to it.
But, none of that changes the fact, that my life has purpose.
It is what it is.
I may not like it. Doesn't matter. It is what it is. Period. God gave it to me, and now He expects me to fulfill it.

"Real believers understand that there is more to life than the few years we live on this planet. Your identity is in eternity, and your homeland is heaven", writes Rick Warren.

Losing Haley gave me an "eternal perspective".
I do NOT like living here without her. I would do anything to change that.

But, I like myself more now. I like how simple right and wrong has become. I like how unimportant material things are to me.
I like wanting to help other people. I like praying for other people, and to know others are praying for me.
I like knowing that, when I die, I will be in Heaven forever. I like, that my life has slowed down, and there is no way I will ever "sweat the small stuff" again.
I wish I could have learned this some other way.

But, believing in God, means trusting that He knows what He is doing.

So, that is my sermon for this week. :)

Other news....
Toy Drive is still ongoing....we especially need toys for boys. And coloring books.
My email address is listed on this site. If you can help, please email me.

Prayer requests;
Aiden
Jen and Jon
Matty

My dad's surgery the end of the month.

Okay...next time I'll tell you about Kelly (our Border Collie) and the popcorn ball.

Much love and prayers,
Cheryl

Monday, October 16, 2006 6:29 AM CDT

First the tree/shrubs/hedges story is long from over, as I will explain later.

I have a story for you…a story about the song you are listening too. That lovely song, Everywhere.
In January 2005, Haley had a spontaneous epidural bleed. It was massive…the words “mid-line brain shift” and “possible stroke”…were thrown around (calmly, if you ask me) by the neurosurgeon.

We were lucky that she survived the surgery. After several days she started to very slowly become aware of what had happened to her. She knew her brain had been cut into.

She asked, “Did they take out the part of my brain that writes songs?”

“No”, I immediately reassured her.

She said, “Good, I am going to write a song about that nurse who shoved that NG tube up my nose.”

Hmmm…Wonder if that would have been a flattering song for the nurse?

BUT, Instead when she wrote a song, about 2-3 weeks after her surgery, it was not about her nurse. It was about her Father. Her Heavenly Father.

That is the song you hear playing right now.

~~~~~~~~~~~~~~~~~~~~~

Okay. HURRICANE BRUCE PART TWO

He tells me there is regrowth here “already”. “Look Cheryl, I hacked up our bushes only 5 weeks ago, and there is new growth. So, I go out there. All I see are the same sticks. Or bushes if you want to call them that. Please tell me if you can see any growth.

Weeds from the ground do not count!.

So, I say to him, "what about the tree?”

“It’s dead.”

“WHAT?”

“It needed to die.”

“What do you mean? Was it sick? Was it suffering? Was it stealing from us? Was it leering at me though our windows at night?”

I can find no good reason that this tree had to die. I think my husband had a grudge to settle.
Maybe it was how tall out tree was, he stood close to our house, protecting my window from the sun.
Maybe it was the way the tree looked at me when I wore my favorite fall sweater.
Or maybe the way the crabapples only fell on Bruce.

OR maybe, and this one is a bit farfetched….maybe Bruce accidentally killed the tree when he was “trimming”. Then committed the murder to cover it up. I am sad to say yesterdays’ tree is now but a stump in the ground.
A stump Bruce may be tripping over once or twice.

~~~~~~~~~~~~~

I was in Atlanta today. I taped the Star94 radio interview that will air during the share-a-thon 11/3-11/4. It was difficult, and it was sad. But, I appreciate them wanting to do a tribute to her this year. I read the letter I wrote for this journal on October 1st.

If Nick hadn’t bee with me, I a sure I would have been a mess driving home, but luckily, he was with me…and allowing my 15 year old, with his learner’s permit, to occasionally take the wheel, proved blessedly distracting.

Coincidentally, we will be there that weekend (of the radio show) also, for the party we are giving at the hospital. We have decided on a “beach/luau” theme. We have a few crafts, and every child will leave with a brand new toy!

Thank you to all who have donated toys, and we will continue this drive until we leave for Atlanta on 11/3.

Special prayers for my Dad who is having surgery the end of this month.

“Death is not a tragedy….living life without a purpose is.”
Author Rick Warren

Love,
Cheryl

Wednesday, October 4, 2006 5:10 PM CDT

Hurricane Ernesto made its way to Northeast Tennessee….Can you believe the damage to our yard?

Oh…No….wait….It WASN’T Hurricane Ernesto….it was Hurricane BRUCE…….and he did this to our yard…..ON…….PURPOSE.

Where there were bushes, he left me sticks.
Where there was a hedge, he left me sticks.
Where there was a TREE, he left me sticks. A TREE!!!
Are you even supposed to trim trees?? Why can you not put hedge trimmers in a man’s hand without mass destruction ensuing?
He does this EVERY TIME he trims our bushes/hedges/trees. This, Thank You Lord, is not often.

So, for someone who is doing mostly absolutely nothing, I have had an eventful couple of weeks. Each of my wonderful children have picked the same moment in time, to have their unique and individual needs made known.
How should I go? Well, Oldest to Youngest, though that is not necessarily the order of difficulty.

Nick….15 years old….apparently has the stupidest parents in the world.

This was the week that every parent dreads…..the Learner’s Permit. First of all, the DMV is, what was it, Kristie? Dante’s seventh circle of Hell?
I don’t like even BEING in public right now, and there is no place more public than the DMV.
The great equalizer. Take a number. Squeeze into the only seat left, next to the guy with a mullet and a tattoo of a hula girl on his bicep. See? We all fit right in.

The guy sitting across from me decides to strike up a conversation. I don’t really mind that, although I am not much for small talk. BUT, he is a “soft-talker”. So, for 10 minutes I smile and nod, and pretend I can hear him because that seems more polite than to continually say….HuH?
What I learned in 10 minutes was, he is from Florida, and I possibly have a date with him next week.

So, after waiting what seems like an entire day, it is our turn. Nick goes to take the eye exam, and I explain that he is blind in one eye. He has been since birth, his optic nerve never developed.

HER: “ Ohhhhh, that’s gonna be a problem…”

ME: “Why? He has 20/20 vision in his other eye. People with one eye can drive. His only legal limitation is he cannot fly a plane. You didn’t think we were here for a pilot’s license, did you? HAHA (nervous laughter, silently praying…please don’t send us away…’I can’t take a number’ again)”

HER: “I am going to have to have a doctor’s note.”

ME: “Why? He will just say the same thing, and you can test his vision. It’s 20/20”

HER: “But, I need a doctor to confirm it.”

ME: “Are you kidding me? You think I am making it up?
Okay, you got me!! He can really see out of both eyes!! I shouldn’t have tried to
fool you!!!”

HER: “Please, ma’am, you have to know that we at the DMV have absolutely no sense of humor. And these uniforms we wear give us an inflated ego and a false sense of authority over you.”

ME: “I was hoping that was just a rumor….or an unfair stereotype.”

HER: “No, sorry, it is all true.”

ME: “But I have been waiting here for an hour.”

HER: “Is that all? We must be having a slow day. It is usually two hours.”

Because I am ME, it took me a week to get Nick to Value Vision for his “confirmation” that he IS blind in one eye.
Back to the DMV, where the line is TWICE as long…literally. No seats, and people lining the walls.
However, proving that human beings DO work there as well, the check in lady offered to take care of us between checking in other people. The checking in of other people was endless, but not as endless as that line, and we soon left with a 15 year old legally allowed to operate a moving vehicle.

And speaking of endless, now the “Can I drive? Can I drive? Can I drive? Can I drive?” begins.

Logan…age 11 (we do not believe in “labeling” our children, but if we did, he would be the “easy” kid)

He started middle school this year, which has been a huge adjustment. And he is taking it all SO seriously. Putting so much stress on himself. So, to add to his burden, and to place us among the contenders for parents-of-the-year, we decided to mess with his head a bit.

Logan: “Mom, I have to return this survey back to the school tomorrow.”

Mom: “Logan, you know I hate surveys, that require effort on my part. Let the PTA moms do the surveys. I am busy watching ‘Laguna Beach’ and eating ice cream straight out of the carton.”

Logan: “Mom! I’ll get in trouble!”

Mom: “Don’t be ridiculous, they can’t COMPEL you to turn in a survey. It’s not like homework.”

Logan: (looking panicked) “My teacher said!!!!”

Mom: (taking pity) “Ok, Let me see it. Hmmm. What do I think about the new gender specific classes? Separating boys from girls. Ok, Logan, I am going to write ‘it probably cuts down on the wild sex in the sixth grade classroom’.”

Logan: “MOM! NO!!!”

Mom: “Calm down, I am just kidding. I am going to write “Opinions are like buttholes. We all have one, and no one wants to hear about yours.”

Logan: (wild eyed) “I think they can take your kids away for writing stuff like that.”

Mom: “Ok, just give me the form, I’ll think of something else.”

Logan: (backing out of the room) “No, its fine, we don’t HAVE to turn in that survey.”

Now, the teaching point you can take from that is, Logan is only in the 6th grade, and I am likely to NEVER get another survey, of any kind, from him.

Now to brag on him a little. We got his 5th grade TCAP scores back, and he is over achievement levels in every single tested area, but his math scores were unbelievable. In five categories, he scored 92 to 99 99s as high as you can get. That means he scored higher than 92-99f the whole state in Math. He did amazing…and we had him placed in gifted math. Lots of homework, but he is doing well.

Kendall….age 7…cute as a button

Kendall is back home schooling. It just suits her better. And it forces me to DO something. Although, not too much, as I have the Abeka DVD’s and she watches her “teacher” on TV. But, I get all her work ready, and grade everything. She is starting cursive writing.

As for me, I am watching ‘Laguna Beach’ and eating ice cream out of the carton. That speaks for itself.

Cheryl

Sunday, October 1, 2006 8:06 PM CDT

A Letter To Heaven

Dear Haley,

Like every day, I have thought of you constantly today. I have thought of little else.

I really loved being your mom. I loved doing that one thing more than any other thing in the whole world. I was lucky, blessed beyond belief to have had you in my life….even for such a short time.

When you first left this Earth, I felt so sad about all the things you were cheated out of….your first kiss, high school, the prom, graduation, a wedding, a career, a baby….a whole lifetime of things. Now, I am more likely to be grateful for all that God has spared you. Although there is certainly joy here, this world is full of pain and grief.
And no one gets away from experiencing it. Some, more than others, I suppose. But, to know that your life is now more perfect than I can imagine, gives me great comfort.

If I were to list here all the things I miss about you, it would take all day. And, I know you know. I am not sure there was anyone on this planet who knew me better than you did.

Instead, I want to tell you some things maybe you don’t know. Like how much I have learned from you.
Watching you face your worst fears head on, I have learned about courage.

Seeing how you have handled yourself in every possible situation, I have learned about dignity.

I have learned what true compassion and empathy are from you. From all the times you prayed for children you barely knew, when you pestered me to buy cards and toys for them, how you would spend an hour online checking on “your kids” and signing their guestbooks.

I learned about kindness from you, in how you treated others. I don’t think you ever knew how unique your spirit of kindness was.
You would never have gossiped or said something unkind about a friend. And you did not tolerate that among your own friends either.
I can see you now, taking a child new to Heaven by the hand, and offering your special friendship.

I learned how to laugh at myself, and everything else, from you. You were, without question, the funniest person I ever met. You made me laugh every day. Every single day. If I had to pick the one thing I miss the most…it would be the gift of laughter you gave me. I didn’t even know how precious it was, until it was gone.

Through your incredible walk with God, I learned about Faith…and hope…and Grace.

You taught me about what matters most in life.

And, my sweet girl, I continue to learn from you, from your life, and from your death.

I have learned that love never dies. I carry your love, and my love for you with me every day. I see the little gifts you have left for your brothers and sister. They carry a part of you with them also. It pops up just when I need it most.

I have learned that memories are my friends. They were so sad at first…but I cherish them and even smile at most of them.

And I am not the only one who has learned from you….your talent, your songs have touched people from all over the country…and outside it as well. I wonder if you can understand how very proud I am to say, “I am Haley’s mom.” Nobody else can say that. That is mine alone.

And that makes me want to make you proud, as well. I want you to look down from Heaven, and say, “You are doing great, mom.” I know you are please with The Foundation that bears your name. My dream is for it to live on, longer after your dad and I have joined you. In the meantime, we are working hard to continue the kindnesses you began.

I love you so much. I am happy that you are at peace. I praise God for giving you to me, and for, when it was time, taking you back Home….where you will wait for me.

Wait for me, sweet angel…..I want yours to be the first face I see.

An eternity of love I send to you,
Your mom

Tuesday, September 26, 2006 9:49 PM CDT

No matter how I fight it, life just seems to keep happening to me. Happening, it seems lately, at breakneck speed.
Which, in my world, means I have to WORK at getting all those hours of mindless TV in. Seriously.
Back when it was an absolutely necessary defense mechanism, I had no idea that I would come to really care about whether Meredith Gray picks Dr McDreamy. Seriously. I CARE about that crap. It BOTHERS me to miss an episode of 'Dancing with the Stars'. I think I would have a nervous breakdown without my TIVO. Actually, maybe I AM having a nervous breakdown.

And now, other silly TV shows have piqued my interest...such as 'Studio 60'....and 'Ugly Betty'.
That is ALL I need...new people to get to know. And yes, I feel like I know these people. And yes, I know how crazy that sounds. However,they are extremely low maintenance friends.

Okay, so about all this busy-ness. We drove to Atlanta early Friday morning. I mean early.
Like leaving at 5:30 am. And I KNOW Bruce did the driving, but all that sleeping in the backseat STILL made me grumpy.
We get to Atlanta about 1PM, shower, and go to the hospital. We dropped off 48 boxes of crayons and coloring books for the kids at transplant clinic (Thank you, Jeff), 30 Spanish-language books and 6 DVD's for the inpatient kids, all courtesy of donations from the wonderful supporters of The Haley Vincent Foundation.

We met with people regarding the party we (The Foundation) will be hosting in November.
And we had a chance to see one of Haley's doctors and some other staff we have stayed in touch with.
Although the hospital continues to be a difficult place to be, it is gratifying to be able to do something for the kids and their families who have no choice but to be there. I love that Haley's impact continues to be felt there.
Along with my sadness, I feel such incredible pride to have been her mother.

Saturday, despite the fact I had not packed the right clothes, we decided to visit Stone Mountain.
As I got out of the car in corduroy long pants and clogs (Hey, it's Fall here in NE TN) I knew immediately I was going to be hot and grumpy.
And I was right.
Plus everything cost money, and everybody wanted cash. Who carries cash anymore??
So, by the time we paid $8.00 in parking, and $15.00 to get into the 'Japan-Fest' that was going on, we only had a few dollars left.
And now I was HUNGRY, hot, and grumpy. I was able to scrape together enough cash for a funnel cake and a diet coke....so that helped.

So, we were walking through the vendors and, despite the heat and crowds, it was actually pretty fun....

when

WHAM!!

In my face....

SUMO WRESTLERS!!

EEEWWWW!
SERIOUSLY!
EEEWWWWW!!!

Now I know this is, like a REAL sport. But, these were not even real Japanese people.
These were nasty white boys, in thongs, with their cellulite hanging out.
With microphones. Calling people over. Asking them to wrestle with them!!
AS IF!!!!
Not one person volunteered.
I think this whole display had a lot more to do with a love of exhibitionism than a love of wrestling.

After that trauma, we went to Subway, took sandwiches to our hotel room, and promptly fell asleep at 6PM like the old farts that we are.
And that would have been fine if I hadn't called a sweet caringbridge friend and made plans to see her!! And to insult her even more, my cell phone was charging, so it never rang, and I didn't hear her message until the next day.
Please forgive me Deirdre ! I am so very sorry!! You must think I am terrible. Everybody! Go sign Deirdre's guestbook, and tell her I am not usually that rude! Or if you can't tell her that, just make something nice up about me!
I really AM sorry. :(

Sunday was the baby dedication. Adorable Jordan Haley was dedicated to God in a beautiful ceremony, with a touching tribute to our Haley.
I was an emotional MESS! At least half a box of Kleenex was used just by me. But, in a good way. I was, of course, so very, very sad that Haley wasn't there, but I was so proud of her too.
And I am so honored to be included in Jordan's life as well. Our two families share a special bond because of our two daughters.
And there is real joy in that. I see God's promises of turning mourning into joy unfolding with each life event such as this one.
Thank you Matt and Kim for letting us be a part of Jordan's life.

(And Deirdre....I cried myself into a migraine, and slept on the way back to TN, so I didn't call...and then we were home....and I had ALL those shows TIVO'd....okay, I AM the worst. I have NO excuse. I am sorry!!!)

Monday, we were back home, and there was home schooling to be done, and foundation work. We are getting lots of referrals, ..so if you know any wealthy people who want to give to a wonderful non-profit organization, have them email me.
More importantly, if you know a family who would benefit from our services, please refer them to us. We want to help.

I am going back to Atlanta on Thursday to be interviewed by Star94 for the November Share-A-Thon.
They will be doing a memorial to Haley. I believe they will be using parts of her interview from last year as well.
I have the tape of it, but have never listened to it. One day I will find the courage to listen to it.

Please pray for me this week. I will be driving up and back Thursday/Friday after what will be, I am sure, an emotional day. And the one year anniversary of Haley's death is Sunday. I can't believe it has been a year.
Other prayer requests:
Aiden
Bailee's family
Rachel
Catie

All in all, God has brought me a measure of peace and comfort this week. And I thank Him for that. I pray that same Grace for all of you visiting here this week.

"Since you have been raised to new life with Christ, set your sights on the realities of Heaven, where Christ sits at God's right hand in the place on honor and power. Let Heaven fill your thoughts. Do not think only about things down here on Earth."
Colossians 3:1-2

I leave you with those wonderful words of wisdom.

Cheryl

Sunday, September 17, 2006 6:15 PM CDT

Well, I had a "lighter" update all ready for this week, but Lisa is holding it hostage. Just because her son, Aiden, had an anaphylactic reaction, and spent a night in the hospital is NO reason to be slacking off with my web page. Just because she spent days working on a Chik-fil-a fundraiser in her hometown for Haley¡¦s Foundation is NO excuse either. Come on, Lisa, we all know it"s all about me...isn't it?

So, instead, you get what I am thinking about this week. Which is actually something that happened to me last week. :)

For those of you who follow this journal, you know that I have found, for many years now, my comfort, my strength, my purpose in life in God. But, surprisingly, (to me, at least), I have found all things "church-related" to be extremely difficult.
Since Haley died, my faith has grown even as my attendance has decreased. Thus, adding to my puzzlement about the whole situation.
But, at a raw level, worship services, small group, bible studies all make me sad. And, it is easier to avoid what makes me sad and emotional.

Having said all that, I was in a particularly bad funk the last few weeks. Grief, at this stage, seems to come in waves. A couple of days of peace, less pain....followed by three weeks of anguish. I think it makes it worse to have had a good day or two, to then to be smacked in the face with grief, and loss, pain and such unbearable sadness all over again.

I was driving home from the store the other day, and I was thinking about my relationship with God. I realized I hadn't even been reading my Bible or praying at home. In fact, I realized that even THAT was making me uncomfortable. So, I turned it over in my mind, and examined it.
And I asked myself, "What is really going on?"
And BAM!!! I burst into tears and I got ANGRY. I mean PISSED OFF.
I have never, ever been mad at God. I trusted Him. I knew His purposes were perfect. I knew Haley was safe, and more alive than I am now. Who am I to question Him? The Creator? I mean, come on.
Nevertheless, I was suddenly so angry with Him, I was on the verge of wrecking my car.
So, I let loose on Him.
I said (Pretty much),
"YOU had the power to save her. You didn't. YOU let my baby die.
AFTER you let her, and us, suffer for five years. She deserved to live.
I deserved to HAVE her live. We were good people. We worshiped you, we loved you, we obeyed you. We did what we were supposed to do. WE PRAYED FOR HER!!! Why would You do that? Why was our family less deserving than the ones who get your miracles and your favor."

Oh, yes, I was quite worked up. I had never been so angry in my whole life. And, it felt good.
And then, it was gone.
I kept trying to re-create the anger in my mind.....I kept trying to have that conversation, and yell some more at God, but it was gone.
It felt as if, once I released it, it was just gone, and I couldn't get it back.
And I really tried. For a day or so I tried.

I finally decided that God had engineered that whole thing, like He does everything, for a purpose. I had to release the anger to have any healing.
Now, I don't want anyone to think I have been miraculously healed of my grief. But, I have taken a baby step, and that is good.

We will be in Atlanta the end of this week, and it stands to be very emotional, as we have a meeting at the hospital. Please pray for us, that we are productive and have the strength to get through it.

And while you are praying, Christi's parents are experiencing something not many of us can imagine.

Prayers also for Kendrie's mom and dad.

"Blessed are they that mourn, for they shall be comforted." Matthew 5:4

I guess sometimes He finds ways to comfort us that we couldn' find by ourselves.

Cheryl

Wednesday, September 13, 2006 9:46 AM CDT
I have received some negative feedback in regards to my last journal entry, and I feel the need to clear up a few things. Most of these I have said before, but I guess they bear repeating.

1. My journal entries are but a glimpse into my life. Although I am incredibly sad, I do not spend 24 hours a day grieving. God gives me moments of peace and comfort. He even gives me moments of laughter.
Just last night, I gave Cara (our dog) some chicken, which she promptly choked on, and the whole scene of her gagging, and Bruce trying to get her to NOT throw up on the couch, reduced me to fits of giggles.
I can’t write about every second of my day, so I write about either my overall feelings, or what God leads me to write about.

2. After Haley died, I searched CB sites to find how others were coping two weeks, two months, two years down this road. I was so lost. I didn’t know what to expect.
I found a lot of information and inspiration at those sites. It, at the time, was the sole reason I kept this page going, to help the parents who traveled this path after me.
I knew others would search, the same way I had.

3. About my other children. Yes, it has been difficult. No, they haven’t had a “normal” childhood. But, they have risen to the challenge. And they are learning lessons that other people don’t usually have a chance to, until much later in life.
Lessons about life, compassion, and faith. They know they are loved. So very loved.
And because my feelings are shared openly, they are learning to do the same. Last night, my 15 year old shared something quite painful for him. I felt honored that he trusted me to help him.

4. Make no mistake, I am proud of my children. They reflect the very best in us. They get good grades, are well behaved, are all gifted musically. They get along well with each other, and I believe, understand and are grateful for the sibling experience in a way most children are not.
Although it is hard for me to go places, we spend nearly every evening together. We make popcorn, watch TV or play board games.

5. There are really only two reasons for you to be on my caringbridge site.
- to inspire, encourage, or support me
- if you think I can inspire, encourage, or support you by my experiences.

6. I have a counselor to give me advice on my feelings and my actions. Unless I specifically ask for it, I don’t want your advice.
I am sorry if that sounds harsh, but I make myself extremely vulnerable on this site, and a vulnerable heart is easily wounded. What feels like helpful advice to you, may feel like an attack to me.

7. I have taken positive steps towards healing, with Haley’s Foundation. It is unbelievably difficult to interject myself back into the world of pediatric illness and death.
But, I know we are meeting a need, and making a difference. Especially with our grief packages…this is an undersupported population of people, too sad and isolated to reach out….so we reach out to them.

If I have offended anyone, I truly ask your forgiveness. It was never my intention. Please know, I am doing the very best I can.

God bless,
Cheryl

Wednesday, September 6, 2006 10:08 AM CDT

*Added Thursday, Sept.6, 2006

Two more of our caringbridge family members are gone too soon.
Bailee and Cameron

Please pray for their families. I feel so empty and sad....just too many children, gone too soon.

I have been meaning to write all week, but sometimes it is just so hard. My energy levels are pretty much zero. I use all I have on just getting by. Homeschooling Kendall, keeping the house just clean enough not to be condemned, making dinner, and foundation work.

Today, Kendall has a piano lesson, and that is a big deal for me. To get in the car and go somewhere (anywhere) all but guarantees a bad day for me. I think that is how agoraphobia starts. You start associating outside your house with these bad feelings. I can understand. After, I have been out, when I see my house, I have this feeling of relief.

I am uncomfortable in my own skin right now. I feel this sense of impending doom. I think it is because the one year mark of Haley’s death is approaching. I have been thinking a lot about why this bothers me.

When Haley died, I made a very conscious decision to not make every 1st of the month, every Saturday any different than any other day. I decided not to count off weeks, days, or hours in my head. Or to say…”this is what was happening exactly this time one week ago”. I knew myself well enough to know I would go crazy doing that. I made a conscious decision to NOT know the exact time of her death. I told myself that every day is bad without her, so it doesn’t matter. And it has worked pretty well. I do have some horrible “flashbacks” to the day she died, but usually they are triggered by something on TV, or a comment someone makes, not because of what day it is.

So, why does this feel this way?

I didn’t anticipate September being so hard. This was the last month of Haley’s life. The last movie we saw, the last episodes of Friends and Gilmore Girls, our last trip to the mall, the last time I got to buy her clothes, the last time she had a first day of school, her last CT scan, her last doctor appointment, our last trip to Atlanta., our last stay in our apartment, our first and last concert together, the last time she sang in public for a hospital event, the last time she saw anyone except her immediate family, the last birthday party she attended, the last time she went to her best friends house, the last time she played in her room, the last time she wrote anything down, the last time I fixed her medications….all happened in September. Because she woke up sick on Oct.1st, and died before the end of the day.
The last day I ever felt true happiness was in September. The last day I did not cry was in September.

But, it’s more than that. There is something significant about one year. A milestone, I suppose. And that bothers me….and angers me. I feel, rightly or wrogly, that there is an unspoken rule that a year is enough grieving time. In civil war times, they had “official” mournig of one year…you wore black and hung a wreath on your door, and then magically, you were back in normal clothes, wreath gone, able to dance and attend parties, as if there was some difference between 364 and 365 days.

I feel as if people, even my own family, are frustrated with me. As if I should be better now. More able to put on a happy face. Function better. Be stronger. So, not only am I still hurting as much as ever, now I feel like a failure also.
They say, “You have to make a choice to be happy, to keep going, you have other children, just DECIDE these are happy tears, you know she is in Heaven. Would Haley want you moping around? You owe it to your other children to be normal again.”

I say. “Do you think I WANT to feel like this. That I would choose to lay around and watch trashy, horrible TV. That I prefer my life as it is, to what I once had? I WANT to take my kids to the movies and the park. I want to go to church and bible study. But I want to do it without crying my eyes out….and I am not there yet. I am sorry!!!! I wish I could magically make myself only have happy memories.
But remember, you are not the ones who watched your child suffer and die. You didn’t see her turn blue. You were not the ones who begged the doctor to save her, and then told him when to stop trying. You were not the one who had to kiss a face that could never, ever kiss you back and say goodbye to her. No one knows what I lost. You were not her mother. I was.”

Now people will read this and think I am talking about them. If you care enough to wonder that, it is not you.
No, you are the ones who support and love me, no matter how crazy I get. Who try so hard to understand what I am feeling. Who have walked this path. Who pray for me when I don’t have the words. Who strengthen me and restore my faith. Who make sure I know that you remember her. Who support me through Haley’s Foundation. You are my friends and my family, and I love you.

It is unthinkable to me that it has been a year. It feels like a month. I cannot believe that I have woken up every day for a year without my daughter. That I have kept breathing. That it isn’t just a bad dream.

And I have heard, from other parents, the second year is worse than the first. Sometimes, I wonder if I will survive.

Cheryl

PS As Kat noted in the GB, she has set up a candle lighting spot for Haley. Please think about lighting a candle for her. Thanks

Tuesday, August 29, 2006 7:17 PM CDT

I had a different update all ready when I heard this news, and felt it deserved this space all to itself.

Another child has flown to Heaven too soon. Caitlin, a friend of Nick’s, died yesterday, following complications from surgery.

I know that Caitlin is fine, strolling the streets of gold with my own angel. But, her parents are not okay. And will not be for a very long time.
They have lost a priceless, priceless, treasure….their only child. How my heart breaks tonight, for them, for me, for all of us.

Cheryl

Thursday, August 24, 2006 8:35 PM CDT
Hello Friends,

For the last several weeks I have been whining, sniveling, pouting, and exhibiting other childish and unflattering behavior. No one has called me on it because
1. You all are too polite

OR

2. You are afraid of me

I think you are afraid……and with excellent reason. I am a completely unbalanced woman. Mood swings??? Are you kidding me???? I found my self (in the same day) laughing (until I had tears) about some poor unfortunate woman who lost control of her bowels on “Flavor Flav” (I don’t watch that show, I feel the need to add, but saw a clip of it on another show), crying because I couldn’t get my comforter to fit in the washing machine, and angry (I mean, spitting fire) after listening to President Bush’s speech. I mean, come on, I don’t care if Iran’s gonna nuke us. I say….”Bring it on!”
That is NOT a bash at the President…I am bi-partisan, which means ½ republican and ½ democrat. I’m a Republocrat.

So what is worse?

Paralyzing grief or out of control emotion? This is a rhetorical question, of course, since I don’t actually get to CHOOSE one.

So the point of my rambling is this….. Once people realized I was feeling isolated (even though I do this to myself) and as if Haley was forgotten, I was reminded in many ways, just how many people are NOT forgetting, how many people choose to not only remember Haley, but to honor her life and the legacy of music she left behind.

And then I feel silly, because it is just not possible to have known Haley, to have loved her, or to have listened to her sing, and NOT remember her. God reminded me, in a gentle, loving way, that she would never be forgotten.
But, I really love when people remind me that they still listen to her music, or look at her drawings, remember funny things she said or jokes she told….or just think about her.

I read recently that overwhelming fatigue often accompanies grief. I felt relieved to read that, because sometimes I think it is just me. I am so tired of feeling so tired. Life is exhausting. I would really love just a little energy.

Foundation News!!!
The golf tournament was a big success! We raised $3000.00!! And I will forever know what a “mulligan” is. That is knowledge you can’t put a price on.

We have delivered (mailed) dozens of packages of Miracle Mail, and several (too many) grief packages.
I met today with the man who will be manufacturing Haley’s CD’s. He wants to donate the graphic design costs, and we will pay for production. They are going to look so beautiful and professional….they will even be shrink wrapped. :)
I think we should have them ready by late October….in time for the big birthday bash we are throwing at Egleston Hospital in honor of Haley’s birthday. They are actually giving us the exact date (11/5), so I need to start collecting donations of toys and other items. If you want to help with a toy drive, please email me!!! I need your help. 

Sleep well my friends; hug your babies tight for me,
Cheryl

Saturday, August 19, 2006 10:02 AM CDT

Thank you for your entries. They have touched me and made me cry…in a good way.
I know that there are so many of you who won’t forget Haley, anymore than I will ever forget the precious kids I have met from caringbridge and CLASS. Each of them is special, and it is amazing that I have room in my heart for each and every one.

I loved that a couple of you are hanging “Haley stars” in your kids rooms. It is a sweet idea, and I am going to hang them in my own kids rooms. And of course, I DO know she has the 3 bricks at Give Kids The World. I hope to see them in person someday.

Fall used to be my favorite season. I was thinking about that this morning, and I think it goes back to the most ideal years of my life.

When Nick was one (1992), we moved to a small town in upstate New York. Not far from the Canadian border, although we never ventured there…never went anywhere much…too busy building our family.

I loved it there. We lived in a sweet little neighborhood where there were lots of little children. Everyone knew everyone, and we just walked to each others houses. We had a neighborhood Bible Study that I never missed. The fall begins early up there, the school clothes we bought were long pants and sweaters, lots of turtlenecks.

The leaves change, and crunch in the driveways…the apples are crisp and fresh….the air has such a chill, and yet the sky is as blue as it can be. It feels to me like the beginning of everything, like New Years should be sept 1st, instead of Jan. The beginning of school, and the train of holidays, each one a little bigger and more festive than the last. We used to spend much of fall decorating and un-decorating.

Soon I was pregnant with Haley. I loved being pregnant. I loved feeling her move and hiccup. I loved getting bigger and rounder each day. Haley was delivered by C-section on Nov. 5th. Right in the middle of my favorite season. And soon it was Christmas, and I had my two babies…Nick 2 ½ and Haley 7 weeks. Everything was perfect.

By the next fall, I was pregnant again, with Logan. The fall after that I now had three little ones, Nick 4, Haley 2, and Logan 6months. We went to the pumpkin patch, petting zoos, everything open to babies and toddlers, we were at. Everything was perfect. Beyond my wildest dreams was this life I had.

I just breathe in a little of that fall air, and it all rushes back. A different life. A lifetime ago. A time when I woke up expecting to be happy. Planning for my busy day as my feet hit the ground.

Now, for now, I’d rather just stay in bed.

Sunday, August 13, 2006 8:19 PM CDT

I am sitting in my bed, in pajamas, at 7:00PM, with an ambien at my bedside, just waiting….just waiting, for it to be just long enough to be late enough to take the beloved pill, and slide into a few hours of unconsciousness.

Today, we went to church…sort of. I made it through 1 and ½ songs before I was actively fleeing the building. I sat on the steps and sobbed for awhile, and then managed to get to my car. In my car, were Kleenex and a Xanax. Thank God for the small things.

I knew I wasn’t going to do great today, because of my dream last night. I dreamed of Haley. I saw her. She looked normal, and I reached to hug her, and was expecting for my hands to go through her, but to my delight, she was solid. I hugged her hard, and she felt just like I remembered, soft, and warm.

I kissed her lips, cheeks and forehead. I knew it would never be enough. The need to touch her was animalistic. It was from my gut. My love for her was exploding out of my arms, fingers, and lips as I embraced her. She told me she was cold. Oh, between her fevers and poor circulation, I heard that often.

I wanted so bad to take care of her. To bring her home, put socks on her feet, cover her with her favorite couch blanket, put on “The Gilmore Girls” or “Friends” on the DVD player. To give her dinner on a TV tray, and sit with her, talk to her while she ate, let her tell me for the hundredth time her favorite lines and episodes we had watched so many times before.

Oh, Haley, I still haven’t watched a “Friends” episode without you. That, like so many things, lost its appeal as soon as I could no longer do it with you, my Haley.

Sometimes I am a little jealous of the cancer moms. They have so much wonderful support from each other, and with a few exceptions, their doctors, and the hospitals where they are treated.
They have chemo angels and sibling camps, they have bereavement camp, and bereavement groups, and hospitals often have candle lighting/memorial services for the children.

That one may hurt the most that the hospital where Haley was treated for years never even asked for a picture. Just, oh well, she is dead now. That’s too bad. Other than the day she died, never called…nothing. It is possible there was a condolence card mixed in with 600 we got; I still haven’t read them all.

But, my point is, it feels LONELY when your kid dies from something they have only identified in four other people Lupus/Autoimmune Hepatitis. Besides caring bridge, where all are welcomed, I am a tough fit anywhere.

Just once, even in my daughters death, I want us to belong. I want someone to write her name on a star and stick it on the ceiling, or leave with a flower honoring her. A plaque somewhere...even just a picture.

Something that says Haley Vincent was treated at this hospital for four years. We grew to love her. And we will miss her. Seems like a small thing for them to do, after all she gave, and continues to give them. But, we seem to be one of those slip through the cracks family.
Tonight I read an article about an actress named Kellie Martin, who lost a 19 year old sister to lupus. So, now I am thinking whatever organization she is working for about lupus, maybe our Foundation can help the kids. I am going to try my best to get a conversation with Kellie Martin. I have never tried to contact a celebrity before, so any help would be accepted with extreme gratitude.

Also, to my locals, we are soon going to be reaching out to some local families and hospitals, including the Ronald McDonald House. I need workers for Kingsport/Johnson City. We’ll need drivers, packing baskets, bring toys from church to my house, decorating the rooms we use at the hospital at RMH. Please email; me, I CANNOT do it alone, although I will if I have to …I promised Haley. :)

Tons of love to you guys. You know who you are. You are my rocks.
Golf Tournament team is Monday, Aug 21st at 1:00PM, shotgun start. $300.00 per team.
Right now we have 14 teams. We need help registering the golfers and stocking g drinks. We need 12-14 people, and we only have 7. I know it’s a Monday, but check your calendar and email me if you can help.

Love you all, Loving God through my trials,
Cheryl

Thursday, August 10, 2006 11:34 AM CDT

I was a little nervous after that last journal entry, that I might get some negative responses. Although, I have never, in over three years, received a mean email or guestbook entry. I think that is fairly miraculous, considering some of the things I have had to say.

I am not a preacher, even though I may sound a little “preachy” at times. If I come off that way, it is only out of love…AND because I slept at a Holiday Inn Express last night..

Seriously…
I am completely a work in progress. I struggle every day. I am depressed a lot. I can be selfish. And lazy. And I have a little problem with swearing. Not the hardcore words, but I have been known to drop the “A” bomb, and the “S” bomb on a semi- regular basis. Ask any one in my family, “who is the potty-mouth?” They’ll tell you.

And I have questions…..many more questions than answers.

The morning Haley died, as she put her shoes on to go to the hospital. She looked at me and asked, “Is God making me be sick because I’ve told lies?” And I said, “No, God doesn’t work like that.” She asked, “Even if you don’t know about them?” I just gave her hurried assurances that God was not mad at her, and got her into the car.
I have thought of that moment often, too often. And I marvel that Haley had those questions, and all the others, answered just a few hours later as she walked into Jesus’ loving embrace.

But, oh the hole in my heart that she left behind, the Haley sized hole that nothing else can fill. That hole will ache and yearn to be filled for the rest of my life. That pain, the pain of losing a child, is so uniquely devastating, I am not sure anything could match it. I hope I never find out.

This week has been especially tough, as I have realized that in addition to losing Haley, I have lost many other relationships that were important to me. People who, at one time, I thought loved Haley and our family, but who have completely cut us out of their lives since she died. The most hurtful part about that is, I feel as if they have forgotten her in just 10 months. Maybe that seems like a long time, but in my world, time stands still.

And Haley deserved better, she would have done anything for people….she deserved better than to be cast off without another thought. It makes me hurt and angry to think how hurt SHE would be to know that these people choose not to remember or honor her in any way.

It makes me sad.

On a more positive note, I loved your guestbook entries.
Thank you, Susie, for validating my thoughts on that graphic at church. I was moved, hearing it was the same one up the day after she died….just hours after. Thank you for taking the time to let me know that.

Off to find stronger antidepressants :)
Cheryl

Sunday, August 6, 2006 12:41 AM CDT

Warning…..Fairly heavy Journal Update

As I have said many times before, God guides my hand as I write these entries. Not EVERY time…the whole “Nick’s butt is on fire” thing was probably mine alone…..but He makes it clear when He has a message for me to write. Now, the message may only be for me, or maybe not. One of the many things I don’t yet know about our God.

I have been thinking about Hell. I heard a statistic once that 80% of people believe in Heaven, but only 20% believe in Hell. Now, that never made much sense to me, I was a Christian, and I believed in both…but truthfully, I gave it very little thought.
Until recently.
Thinking about Hell, literally makes my skin crawl. I truly cannot imagine what it would be like. Lakes of fire? Snakes and bugs? Our worst fears? People screaming and tearing at our flesh? It is unimaginable.
Which is why, I think, that only 20% believe in it. It is hard to believe in a place you cannot even imagine.

Conversely, I have no problem imagining Heaven. Especially since Haley died. I often see her, walking along the beach (God’s celestial shore), wearing a sundress, water lapping at her ankles. I also imagine her sitting in a lovely park full of children at picnic tables. Some are eating, some are drawing and painting, others run through the park playing tag, the bigger children hold the babies on their laps. And Heavenly mothers and Fathers loving them all. I can imagine the all encompassing light and love of Jesus Christ.

In fact, today at church, we sang a song, “There is none like You”. Behind the words of the song, on the big screen, was a graphic of a young girl on a mountaintop with her hands raised in praise. It was a silhouette, and the only movement was her dress swaying, as if the slightest breeze was blowing. Her hair was long and down her back. I immediately thought of Haley, not only did I just think of her, I thought “There she is.” I didn’t mean to think that, it just popped into my head. (Later, I started telling my family that, and Nick interrupted me saying, ‘You thought of Haley, didn’t you? So did I” Bruce doesn’t even remember the graphic being there.

So, I started wondering why we have such a hard time imagining Hell. I guess it makes us so very uncomfortable. Preachers hardly ever talk about it, and if they do, people are incredibly turned off. No one wants to hear about the “fire and brimstone.”..I can’t blame them; I don’t want to hear about it either.

So, what is Hell?

Simple really. It is separation from God. You may think that is not a big deal, you may think you can get along fine without God. But if you are separated from him, you are separated from everything good. Period. EVERYTHING. Think of the things you enjoy in this life. Everything good comes from God.
No Light.
No love.
No Hope.
No joy.
No compassion.
No happiness.
No sunrise or sunset.
No clouds or rainbows.
No babies.
No food.
No reunions
No companionship.
No truth.
No Peace.

None of those things can exist in Hell. Well…What IS there?
Hate
Darkness
Despair
Pain
Suffering
Cruelty
Lies
Fighting
Torment

And even knowing this, I still cannot imagine a day in Hell. My mind just cannot comprehend that kind of darkness and evil.

And I fall on my knees and THANK GOD that I will never know. I thank God that He sent me, and all of us, a way out. Through Jesus, who paid the price for our own wickedness. It is such an amazing gift. Free. A completely free gift…all you have to do is ask for it. Please ask for it. I love you all too much to see you miss this gift.

Our pastor told this story today in Church. (I am paraphrasing, of course.)

Skeptic: Don’t tell me you believe al those stories in the Bible.

Believer: Well, yes I do.

Skeptic: Come on, you don’t believe Jonah was actually swallowed by a whale? That is not even physically possible.

Believer: I have wondered about that myself. When I get to Heaven, I plan to ask Jonah myself.

Skeptic: What if Jonah isn’t IN Heaven? Huh?

Believer: Then, you can ask him.

Peace and Love,
Cheryl

Monday, July 31, 2006 7:26 PM CDT

I am having one of these random thought days, too many different topics for one journal entry, but not enough meat on any of the topics to really TALK about. I am not sure that even made sense. Even to me.

1. When do children begin to lie? When do we stop finding it cute? And why do they lie?
When Nick was 2, I handed him a piece of chocolate. He dropped it and the dog ate it. I said, sympathetically, “Oh, you dropped it.” And promptly gave him a new piece. He came back to me 2 minutes later with his face covered in chocolate and said “I dropped it.”
Thirteen years later, he is still lying. About the stupidest things. And even when faced with irrefutable proof of his deceit, he denies. He is like a well trained CIA operative. Admit to nothing. For example,

Mom: Nick, you aren’t supposed to be eating in your room.

Nick: I wasn’t

Mom: Then how did all these Twinkie wrappers get under your bed?

Nick: I don’t know. But it wasn’t me.

Mom: So, somebody came into your bedroom and stuffed Twinkie wrappers under your bed?

Nick: Well..I guess…I don’t know who would do that. But it wasn’t me.

His butt could literally be on fire, and if he thought he was breaking a rule, he would deny it was happening.

Mom: Do you smell something?

Nick: No.

Mom: Something’s burning.

Nick: Nope.

Mom; FLAMES ARE SHOOTING OUT OF YOUR BUTT!!!!!

Nick: No, they aren’t. I may have a little gas, that’s all.

2. School starts here in less than a week. I found out yesterday, that the middle school Logan will be attending is instituting a strict dress code. That is fine with me, great in fact, IF…IF I hadn’t just spent a ton of money on school clothes, many which do not meet dress code (Namely cargo pants). It irks me that it was just sprung on me…I found out about it in the newspaper. Don’t get me wrong, I am a FAN of the dress code, they started it at the high school last year, and the kids looked great…like kids. No baggy, underwear showing jeans, or micro mini skirts….no obnoxious writing on T-shirts or belly shirts. I love it. Just a little notice next time guys….and what is wrong with cargo pants anyway…I hate to tell you, but it is HARD to find pants without those side pockets….oh well, I’ll just do laundry every other day, and Logan will have two pairs of pants to wear.

3. Today I went to a lunch for a friend. Why does everything have to be so hard? These are all people who love me and have known me and my family for 10 years. People I am comfortable with. And even with them, I feel like an alien. Like I don’t belong anywhere.
I could have easily walked in there with Haley, fed her 16 pills, and had to leave early because she was ill, and STILL felt completely normal. But, now I walk in without her, and it is like I am an amputee going out for the first time. But what has been cut from me isn’t visible. The part of me that is injured is my heart. It is why I just stay home. I belong nowhere. It’s a good thing I can do a lot of my foundation work from home.

4. Speaking of the foundation, people have asked about it, and there is a link on the top of the page or click here.
We have a golf tournament planned for August 21st. It is a Monday, but think about taking a half day off and joining us. We have 6 teams registered and I would like to have 18 or 20. Our profit is $100.00 per team. So come on out, make our hard work pay off. And, think of all the kids we are helping. We have sent out over 20 miracle mail packages and 4 grief packages in just the last 4 weeks. The kids need us!!!
AND, we are now officially a non profit 501C3. So, it’s tax deductible.
If you want to be on the volunteer email list, it is not too late. Just email me your email address, and you will be kept up to date on what we are doing. Nothing is required on your part to be on our email list.

5. For those of you who know Haley, you know she wrote and recorded 6 songs to share with other children facing the same type of battles. You can listen to them all on our foundation web site (see #4). If you haven’t heard her sing “Everywhere”, you are missing a huge blessing. She wrote this love song to God, only weeks after a life threatening brain bleed. It is my very favorite of her songs, probably because I know how horrible things were physically, yet she opens her mouth, and sings praises to God in the sweetest way. Her friend Steven, in Atlanta came to me a few weeks after her funeral, and told me how he felt it was time for someone to write a song for Haley. And he did. A beautiful song called, “A Voice above the Crowd”. Dan, our music man, is writing music for it now, and I was treated to a bit of the melody this weekend. I was choking on tears. It is SO Haley. And written JUST for her. What a gift. What a blessing.
So, eventually, it will be the 7th, and final, song on her CD, with Steven and his sister (Jordan Haley’s mom) singing it. I feel very humbled they are all working so hard on this to honor Haley.

6. Reality TV. Which shows do you like? There used to just be a couple. But now, it is all reality, all the time! I like ‘So You Think You can Dance’. I cannot dance, but in my mind, I can. I can totally see myself up there dancing away. I love Benji. He’s my favorite. My kids like, ‘America’s Got Talent’, but as Randy Jackson would say, “For me, it’s just okay” I am excited to see ‘Dancing with Celebrities’ back on the fall schedule. I sort of like the ‘Rock star’ one, but they are all so freaky looking; it’s hard for me to get past that.

7. This one may make any men a little squeamish, so just skip ahead. Why are we forced to wear bras? Who made up the rule that it is ladylike to crush and confine our bosoms? Does anyone else find the bra to be so uncomfortable, it is almost torture? I have thought of giving it up completely, but I am such a “By-The-Rules” kind of girl, I just can’t NOT wear one where I may be seen by someone. Please ladies, let’s band together. If we all stop wearing them, no one will stare.:)

Well, I guess I have run out of random thoughts…after that last one, I hear sighs of relief coming from all over…

I love you all, and I will leave you with this. This is a great verse to just meditate on, and I encourage you to do that.

“Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have.” 1Peter 3:15

Cheryl

Thursday, July 27, 2006 3:00 PM CDT

Most of you have heard my wailing and teeth gnashing about the fact that my beautiful, youngest daughter, Kendall, would really….I can barely say the words…..rather be….oh, it’s painful…..A BOY!

Now, on the crap-that-I have-been-through-lately radar, it shouldn’t even make a blip. I mean, when I walk around feeling like a knife is sticking out of me constantly, why should it matter what my daughter wears or plays with? When I often don’t care if I wake up in the morning, why would I care if my little girl wants to be Batman for Halloween?

And yet…..somehow….it does.

I admit it. I demand OTHERS realize what is important in life, while wallowing in the obvious shallowness of wanting my girl to be a ….well…..GIRL!!!!!
Last night, we were looking through a catalog to pick out new décor for Kendall’s room. Bruce is laying hardwood floors in her room (thanks, once again to Cara and Kelly who think carpet is just indoor grass) and I am thinking she is getting older, and maybe it is time to get rid of the Spongebob décor for something more fitting a soon-to-be 2nd grade girl.

So, she brings me the catalog. She wants to trade Spongebob for Superman!!!! Kendall!!!
She just takes one look at the expression on my face, and snatches the catalog, mumbling to herself, “No, that’s for boys”. I am quite speechless, I don’t want to make a huge deal out of it, but Superman bed sheets ARE for boys. So, a few minutes later, she brings it back and has found a cute set from the “Hungry Little Caterpillar” book. It is a good compromise..Bugs and fruit, bright oranges and yellows and green…NO pink, and NO superheroes. Whew.

I really do try hard to compromise with her. Today, we shopped for school clothes. No dresses. I never make her wear a dress. She does not even OWN a dress. BUT, nor can she continue to parade around in public in torn jeans and boys T-shirts. We bought nicer, more tailored T-shirts, lots of khaki Capri’s and bling-less blue jeans. White tennis shoes. Red sandals. She insisted on a boy’s belt. The girl ones were all to bedazzled.

She will actually wear these clothes IF I put them out for her each morning. Left to her own devices, she has been known to actually root through the dirty clothes to find some nasty T-shirt she is attached to. Kendall, who never gets in trouble, has been SCOLDED for wearing things from the bottom of the hamper. We have had to resort to hiding certain clothing items.

I really missed Haley today while I was shopping. So many things I wanted to show her, and buy for her.

Don’t get me wrong, I celebrate WHO Kendall is. She is a beautiful, amazing child. I literally would not have survived this year without her.
And she has all the “important” girl stuff. She is loving and nurturing. She makes us gifts, and draws us pictures.
I just want to paint her nails…..just once 

Stay tuned for the Halloween costume fight. She is torn between a pirate and Darth Vadar. Sigh.

Wednesday, July 26, 2006 3:55 PM CDT

Faith is a spiritual gift and despite what you may think about me, it is not MY spiritual gift. I am, however, a woman of faith. How can that be, you may ask….assuming, of course, you have one iota of interest in me, what I think, or this subject.
I am hoping you do, because this is one of those entries that God has really laid on my heart to share.

Faith never came easy for me. I wasn’t raised in the church. We didn’t pray or study the Bible. I was never sure what exactly what my parents believed…it just wasn’t discussed.
I was a science major, with all that entails.

Faith, for me, was a choice. It was something I intentionally decided to pursue in my early twenties, I decided to try and learn all I could about God and religion, and then to make a choice. Either He existed, or He didn’t.
If He did, then this was the most important discovery of my life, not to be taken lightly.
If He didn’t, it wouldn’t turn me into a criminal overnight, I would still be the same person, only not a believer.

When I decided (or, I like the word ‘learned’ better) that God was real, it changed my life forever. However, faith was something I worked at. It wasn’t like I just woke up and I believed with all my heart and soul. I knew what I knew, but to grow my faith I had to pray, and read, and study. I have worked at being faithful.
Some would argue that I am working at ‘convincing myself’ of what I am afraid is not true.
I say, I am educating myself about what I know to be true.

One of the things that brought me to God was the one thing that keeps so many others away…..Science.
I have read many books presenting irrefutable scientific and mathematical evidence supporting the existence of God.

From ‘The Reptile and the Rose’
“Gravity is constant throughout the Universe. If it were just a bit stronger, stars would be larger and burn too fast, which means that none of them could support life on surrounding planets. If gravity were slightly weaker, all stars would have less mass, and the elements necessary for the formation of planets wouldn’t be created, also making life impossible.

Darwin’s theory of evolution claims that the first living cell was accidentally created from just the right random combination of ingredients over millions of years, but modern scientists from microbiologists to chemists are beginning to realize – and scientifically prove, through the laws of mathematical probabilities – that the odds against this theory are so astronomical that it’s impossible. Because of these calculations, even evolutionists are being forced to admit that because the simplest living cell is so incredibly complicated, the time it would take to be formed through purely random forces of nature would take billions and billions of years longer than the age of the entire universe.”
The chance of everything happening exactly as it would have needed to happen, and to maintain that perfect balance is a billion to one. In fact it is greater than a billion to one.

I don’t know all the answers to all the questions. But I know the answers to the important ones.
God is real. Heaven is real. Hell is real. God created our earth. He loves us. He paid for our sins with the blood of His son.

Question: Do people who believe in evolution go to Heaven?

Answer: They do, if they know Jesus.

Believing,
Cheryl

Monday, July 24, 2006 3:31 PM CDT

I have changed in so many ways since Haley died. One thing I do now is I think about Heaven…a lot. I have been a Christian since 1990, but like most people really didn’t think too much about dying…it seemed scary and an “unknown”. Not many preachers talk about Heaven, they talk about how to GET there, but not about what it is really LIKE there. Not many Bible studies on Heaven…or dying….we mostly concentrate on how to live, what is our purpose here on Earth.

But, I think about it every day. What it is REALLY like. What is a day like in Heaven? Are there seasons? Night and day? Where is Haley? Does she have a bedroom in her mansion just how she would want it? Who is with her? Who is being her “mom”? Does she have a special pet? Best friends? Does she swim? Dance? Sing??

One day I was talking to Nick (my 15 year old) about it. He asked, “Can I drive in Heaven?” I, of course, had no idea. He told me, if he couldn’t have a car in Heaven he couldn’t possibly be happy.
As I pondered this, (after all, we WERE supposed to be happy in Heaven), my younger son piped up from the back seat, “God takes away our earthly desires in Heaven.” Ahhh.
Of course.

We no longer WANT or, I am sure, need those things.
It is a lot like following God. People may think, “I have to give up all this worldly stuff”, but the truth is you don’t WANT that stuff anymore. And if you DO still want it, it is probably okay.

I am re- reading “Heaven” by Randy Alcorn. Reading it with fresh eyes. I just love this book. As I read it, I think it must have been a rewarding book to write. I would love to do research on Heaven, and know as much about it as he does.

So other things…
Pancake Breakfast…Great success! We made almost $2000.00. Thanks to all who worked, and to all who came and ate pancakes.
Next up…Our first annual Haley Vincent Foundation Golf Tournament.
Monday, August 21, 2006. Shotgun start at 1:00 PM. $75.00/person $300.00/team
Ridgefields Country Club

We only have three teams signed up so far, and my goal is 16. A team is 4 people.
I know it is a Monday, but please think about putting a team together. You can email me to register, and pay at the door.

Love you all,
Cheryl

Tuesday, July 18, 2006 6:34 PM CDT

I don’t think I have ever shared this story before, although I have meant to many times. Maybe I have, but I never read my own journal history….way too depressing.

About a week after Haley died, Bruce and I were driving around. That is what we did in those early days. Just left the house and drove. I can remember wanting to get out of the house, but not wanting to go anywhere. My brain desperately wanted to fix the unfixable. So, we just drove around, talking, crying, trying to make sense of something impossible to make sense of.

As we drove, our pastor called us on the cell phone. He said he had felt led to drop what he was doing, and share this story with us.

Haley died on a Saturday night. Sunday morning, amidst his own tears, our pastor announced it to our church. There was a man there, a new member, who did not know us, but was touched by the obvious emotion in our pastor and the congregation. His religious background was traditional, and our more contemporary church was a big change for him, but he was trying to find his way back to God after a long absence from church. One of his major life events that turned him away from God, was the death of his father, a traumatic event that had him questioning his faith.
He had only been back to church a few weeks when all of this happened.

That Sunday, after church, this man felt so moved by our tragedy, he found himself deep in prayer, praying for our family, and for his own faith to be restored.
He had, during this prayer time, what he described as a “vision” of his father walking in a beautiful garden, holding the hand of a little girl.
And he felt comforted and elated at seeing his father at peace.

The next morning, Monday, he was reading the newspaper, when he saw the little girl from his vision. In the obituaries. Our Haley.

He was so uncertain what to do, that he did nothing for several days, but finally called our pastor, and told him he just knew God wanted him to use this experience to comfort us.

I will never forget that phone call. I will never forget how hard I sobbed, or what I said to our pastor.

I said, “If he is walking with Haley, he is one lucky man.”

Tuesday, July 18, 2006 6:34 PM CDT

I don’t think I have ever shared this story before, although I have meant to many times. Maybe I have, but I never read my own journal history….way too depressing.

About a week after Haley died, Bruce and I were driving around. That is what we did in those early days. Just left the house and drove. I can remember wanting to get out of the house, but not wanting to go anywhere. My brain desperately wanted to fix the unfixable. So, we just drove around, talking, crying, trying to make sense of something impossible to make sense of.

As we drove, our pastor called us on the cell phone. He said he had felt led to drop what he was doing, and share this story with us.

Haley died on a Saturday night. Sunday morning, amidst his own tears, our pastor announced it to our church. There was a man there, a new member, who did not know us, but was touched by the obvious emotion in our pastor and the congregation. His religious background was traditional, and our more contemporary church was a big change for him, but he was trying to find his way back to God after a long absence from church. One of his major life events that turned him away from God, was the death of his father, a traumatic event that had him questioning his faith.
He had only been back to church a few weeks when all of this happened.

That Sunday, after church, this man felt so moved by our tragedy, he found himself deep in prayer, praying for our family, and for his own faith to be restored.
He had, during this prayer time, what he described as a “vision” of his father walking in a beautiful garden, holding the hand of a little girl.
And he felt comforted and elated at seeing his father at peace.

The next morning, Monday, he was reading the newspaper, when he saw the little girl from his vision. In the obituaries. Our Haley.

He was so uncertain what to do, that he did nothing for several days, but finally called our pastor, and told him he just knew God wanted him to use this experience to comfort us.

I will never forget that phone call. I will never forget how hard I sobbed, or what I said to our pastor.

I said, “If he is walking with Haley, he is one lucky man.”

Saturday, July 15, 2006 6:44 PM CDT

I appreciate all your thoughts and prayers.

Unfortunately, my blue funk continues.

C.S. Lewis said it so well in ‘A Grief Observed’

“Tonight all the hells of young grief have opened again; the mad words, the bitter resentment, the fluttering in the stomach, the nightmare unreality, the wallowed in tears. For in grief nothing ‘stays put’. One keeps on emerging from a phase, but it always recurs. Round and round. Everything repeats. Am I going in circles, or dare I hope I am on a spiral?
But, if a spiral, am I going up or down?”

Monday, July 10, 2006 1:11 PM CDT

I know..a long time between updates, but I have an excuse.

I am depressed.

Last week, Haley's medical records came in the mail. Reading about her last day was incredibly painful. And it made me angry all over again with the doctor who treated her.

One of our liver kids died. She was four.

One of my CB friends I have grown to love over the years has relapsed.

I know this, too, shall pass. But I don't feel like writing or talking (I WILL call Lisa, I promise), or even breathing…

And to top it off, I am getting fat.

“We’ve been given a glimpse of the real thing, our true home, our resurrection bodies! The Spirit of God whets our appetite by giving us a taste of what’s ahead. He puts a little of Heaven in our hearts so that we’ll never settle for less.”
2 Corinthians 5:4-5

Sunday, July 2, 2006 11:52 AM CDT

By popular demand, here is the buzzzzzz on the bee story.

A few years ago, we noticed an unusual amount of bees on the back deck of Kendall and Haley's bedroom.
Our first plan of action was the usual one for us.....ignore it and hope whatever the problem is goes away on its own. Didn't happen.
Instead, there were the always one or two dead bees in the girls room, or the random bee flinging itself against their window, trying to get back outside through the glass.

Which actually reminds me of another story...before we were married, Bruce and I went to a friend's house for a football party....you know, tailgate without the truck....and with a TV. Bruce had had a few (too many) beers and with a hotdog in his hand, smashed into a glass door while trying to walk through it. The glass is now smeared with mustard. So what does my husband do? He backs up, and tries again. Of course, surprisingly, the glass was STILL solid and he hit it again. You could just see the wheels turinig in his beer-addled brain..."Hmm...must need a little more momentum..boy that wind resistance is something else..."¨

Okay, so back to the bees.

The bees were starting to become a real problem. Kendall was still in a crib, and we would go to bed at night....all would be quiet...then buzz. An elbow to Bruce's ribs, and he was up to put the bee (and us) out of our misery...for a night.
Time for plan B.....now think about this....bees in the house....what would you do???

Call an exterminator!!! Of course!!!

Except that honeybees are a PROTECTED SPECIES! That's right, they are not ALLOWED to kill them! Now, I like a honeybee as much as the next guy, but come on, they are getting in the house, where my kids sleep!!!!!

Okay, that part reminded me of another story.
During the 20 year long honeybee debacle, as it has become known in our house, and possibly the entire town of Kingsport, I was homeschooling Haley.

Homeschool moms know we take EVERY opportunity to teach (and eat).

So, I had Haley search "Honeybees" on the internet. Imagine my surprise when a triple X website appears. AND it is "mouse-trapped", meaning every time you click on the exit, it just takes you to another picture.
I am frantically pounding the computer, trying to get the extremely nude (except for the little bee-antennas on their heads) girls off my computer, Haley (who was always the world's biggest prude) is screaming, "Mommy, get it off! Get it off!" We were both traumatized enough, we gave up on the honeybee lesson for good. I have been told that that site is no longer up, (by someone who cared enough to check for me), but I won't be searching "honeybees" anytime soon.

Okay, so back to the bees.

Yes, they are protected, but IF they are posing a threat to humans, the exterminators can kill them, but only a little bit.
They would send a "couple guys", it was a bit hush-hush, and after that, we called them the "Bee Hit Men" to protect their identities. Because bee hit men SHOULD be a protected species!!!
We had them out at least three times as they tried to do the very least damage to the community of bees at large, while making our house safe.
Not working. Still have bees in the room.

So, we decide to try and figure out where they have their hive. We have always thought it was in the attached deck because that is where they are swarming.
My brilliant husband decides to use his stethoscope to listen to all the walls and the floor. He looked absolutely ridiculous, BUT, we could hear them loudest in the actual floor of the room.
We call the bee hit men back, and they say "Huh" "That IS a problem...You are going to need to call a bee keeper."

Excuse me? A BEE KEEPER?? I don't KNOW a beekeeper or how to call one! They are not exactly in the phone book....at least not in OUR phone book.

Somehow, we find a bee keeper. I think he was a friend of a friend of a patient's of my husband. (And I need to add, my husband has the BEST patients, they are always helping us with various things).

I talk on the phone to the bee man The bee man is country. I mean SO country he is cute. You want to pinch his cheeks.(Of course all this from one phone call :))
He says we have to be ready to pull up the floor when he gets there.
As in the whole floor, including the sub floor. (Did I mention I was trying to raise four young kids, one with a liver disease?) This was becoming a full time job.

So, the day comes, we are all in our positions. The carpet has been taken up, Bruce has his hammer and crowbar, the kids are locked in the usual closet, and I have the video camera. HA! If you don't believe this story, I have actual PROOF!!

In walks..hush now....The Bee Whisperer.
All he brings are several buckets, and that bee-soothing voice. I, seriously, thought they put the bees to sleep or something with sleep-spray. BUT NO!

The Bee Whisperer just GETS them.
The floor is torn up, he gets a piece of the hive and just starts collecting the bees into his bucket. The bees just go to him!!! His arms are covered in bees!!!
They follow him like the he was the pied piper, and all the time he talks so soft to them, and moves so slowly.

As he got deeper into the floor, he finds the dead bees from where the hit men had knocked a few of them off.
He said, very softly, almost to himself, "Someone has done a very bad thing here. A very bad thing."

I felt SO BAD!! Which is crazy, but he was literally caressing these bees, and talking to them! You could tell he really cared about these bees.

They took out a "hive" from under the floor that was about 6 feet by 4 feet. It had to be broken into many pieces. We all tasted the honey, and we broke off a couple of pieces for the kids to take and show at school.

Bruce rebuilt the sub floor, and we put in a hardwood floor. And the bedroom has been sans bees ever since. AND we have a bee story to add to our family lore.

REMEMBER THE PANCAKE BREAKFAST!!!
July 22nd 8-10am
$5.00 Tickets at the door OR in advance nhlk@aol.com

Love and prayers,
Cheryl

Thursday, June 29, 2006 1:23 PM CDT

I walked into church Sunday angry. Not AT anyone. Not even at God. Just free floating anger. Maybe angry at the many injustices in this world.

And then, as always happens, the message spoke to me. Our pastor spoke about how useless an emotion anger is, and how NOT of God. How true. What does being mad get me? It makes me feel worse, puts knots in my stomach, makes me grind my teeth, and most importantly..It does nothing to honor either my daughter or God.
It doesn't make people want to reach out to me.
It doesn't improve my life in any way.
It won't bring my little girl back to me.
Not only is it useless, it is destructive.

I think, for some people, anger does make them feel better. Actually, the truth is letting the anger OUT is what makes them feel better.

For me, it is more about sorrow and tears. My sadness always outlasts my anger. And I feel better after I cry. Unfortunately, I have to hide my tears more and more. Especially from my family. My kids want to move on. They don't want their mom to be sad forever. And, the thing that matters most is, they are FINALLY starting to talk about Haley. They won't do that if they think it will make me cry.

Now, please know, I am only talking about ME here. If you have lost a child, and you are angry, that is fine. Nobody understands the WHOLE gamut of emotions better than me! And I am NOT judging. I get so mad sometimes, I want to actually smash things...I have just discovered, that for me, it doesn't work. I just get no relief or comfort from anger.

I posted that last story (last entry) because Bruce is doing another, quite involved home improvement project. This one, however. Is at my request..so no making fun...which is WAY hard for me. So, after he is done, I will make fun of him again :)

I am doing okay, most days. I certainly would not have chosen this life, even with the blessings God has shown me along the way. If I could change it, I would change it in a heartbeat The ONLY thing in this world I would not trade to have her back here is my salvation..and that of my family. That is my promise that I will see her again. I guess that is why He doesn't give us a choice. He makes us walk the hard road. But, I know He walks it with me.

Someone asked me once if I ever thought of what that reunion will be like. The answer is "No". It is too painful. Can you imagine not being able to think about something because the sheer joy of it is too painful to imagine.

When we planned Haley's funeral service, it was through a veil of shock. When they asked me about music, the first thing out of my mouth was, "I can Only Imagine", a beautiful song about Heaven. It was a song that Haley and I had listened to dozens of times together during the many hours we spent commuting back and forth to Atlanta. Now, I am left alone to imagine. And it just hurts too much.

Today, Nick and Logan got into a fight over Logan playing Haley's music on his ipod. Nick told Logan that if I heard it I would cry. When I Nick that, not only was it okay for Logan to listen to it, but I encouraged him to listen to it, Nick admitted that it was really him (Nick) that the music upset. I hide my own tears so as not to upset people (when I can)..so I don't know..no easy answers, that's for sure.

I am excited about our first real fundraiser coming up for Haley's Foundation A pancake breakfast at Applebee's here in Kingsport. PLEASE try to come!!!! The tickets are only $5.00, and our whole family will be there along with some of our key people from Atlanta and Florida. It is July 22, from 8-10, and you can buy tickets at the door or in advance by emailing me, or Pat at nhlk4@aol.com.
I really hope to see you all there!!!!!!

Love and Prayers,
Cheryl

Sunday, June 25, 2006 3:14 PM CDT

Mother’s Day 1998

Husband: “What would you like for Mother’s day? Three children in four years means you deserve anything I can buy/get/do for you! I GET how hard you work around here, I really do.”

Wife: “Oh, honey…all I really want or need is my adoring husband and children appreciating me. But, I will settle for a nap. That’s all…just a nap on this rainy, Sunday afternoon. I haven’t had a nap in years!”

The Wife puts on her softest pajamas, snuggles into her soft bed, listening to the beautiful stillness interrupted only by a few raindrops on the windowsill, when….

BAM!!!

Wife: “What the….?”

Husband: “I KNOW you said a nap, but what you really want is for me to build you a walk in closet and start RIGHT THIS SECOND!!!”

Wife: “What the…?”

Husband: (with a sledgehammer in hand) “I am going to knock this half wall out and build you a big walk in closet.”

Wife: “Huh?”

Children: (One in diapers) “Daddy, can we hit the wall?”

Wife: “NO! Don’t give the kids a sledgehammer!”

Husband: “Of course not, don’t be silly, they need hammers their own size.”

The wife leaves the bedroom, realizing her mother’s day will involve power tools, and praying it doesn’t also include a trip to the ER.

These days I beg my husband NOT to get me anything for Mother’s Day, and in returun, I also agree to completely ignore Father’s Day as well. It works for us.

Thursday, June 22, 2006 9:26 AM CDT

A day in the life….

Bruce, yelling from upstairs, “CHERYL!!! IF THAT DOG OF YOURS CHEWS THE CROTCH OUT OF ONE MORE PAIR OF MY RUNNING SHORTS, I AM GOING TO MAKE HER EAT THE REST OF THEM!!!!!!”

Now, the seriousness of the situation was lost on me, as soon as I visualized my husband force feeding his running shorts to my 12 pound Corgi. I actually think, pound for pound, she could take him down pretty easily. She is a tough little thing.
I think if we are going to be upset about something though, it should be the fact that she occasionally sneaks into out walk in closet and poops. In fact, we are laying hard word in the closet and our bonus room to remind the dogs they are INSIDE THE HOUSE!!! Stupid dogs. Gotta love ‘em, though. Just a day in the life….

So, I found out Kendall (barely 7) was looking up bad words on Nick’s computer! Now, the words were not things that we throw around here at home….EVER! But, she does have two brothers, and a TV set. I have noticed lately, if something “adult” was said on TV, I might say to her..”You are too young to know about that”. I guess she took it in her own hands. I just hope she wasn’t permanently scarred by the pictures. I really need to figure out that “nanny” software. Luckily, she misspelled many of the words she was trying to look up. Just a day in the life……

Last week, we had to put in a new heat pump. For nearly four thousand dollars, there is SOME level of expectation. Trained technicians, delivered in a timely manner, courtesy, and that it WORKS! A day later, there is a horrible smell and a noise like metal scratching metal (And yes, that IS as unpleasant as is sounds.) We call. No problem, they say.
The next day a tech comes out and removes a huge piece of shipping bracket that the installers had left behind, despite the warning in bold red letter “REMOVE SHIPPING BRACKET BEFORE USE”. So, he takes it out. We roll our eyes, and he leaves.
The next day, the noise is back, and SO LOUD, we cannot run the A/C at all. 90 degree weather here as well.

I call (AGAIN) only to be told….no problem, someone has been “dispatched”.
“Dispatched” apparently means sent home to enjoy his own air conditioned home, because it took us two days to see him.
He tells us the shipping bracket burned up the motor. Now, they will replace the motor, but not the unit, and accuse me of being unreasonable for wanting a whole new unit, and not one that has been damaged already.
To make a long story..well, not exactly short…I gave up the fight (unlike me), and they replaced the motor. When the guy came, I found myself suppressing the urge (by actually biting the inside of my mouth) to yell, “You Suck!!” Not very Christ-like, I suppose.

Needless to say, I will not be using this business again. If any of you local people want to know who NOT to buy your next heat pump from, email me.
Just a day in the life…..

A favorite Haley joke:

A man breaks into a house. As he is stuffing things into a bag, he spots a parrot. The parrot shakes his head sadly at the man, and says “Jesus is watching you.” The man, stunned, stares at the bird. “Who are you?” he asks. “Moses”, says the bird. The man laughs and says “Who would name their bird Moses?” The parrot answers, “The same people who named their rottweiler “Jesus”.

Cool at last,
Cheryl

Monday, June 19, 2006 2:02 PM CDT

We had a pretty low key weekend.

As has become our habit, we avoided church…mostly because of Father’s Day. Churches really tend to celebrate Mothers/Fathers Day…which is great of course. But, sometimes you just don’t want to be reminded that you have one less child to mother or father. (Not that we HAVE to be reminded!)

After my trip to Atlanta, I went right back to my routine of avoidance and distraction, of which I am a master. I thought, since it seemed such a huge step, I would be “better” when I got home. More functional, at least. And when that didn’t happen, I really had to think about why. And I had an epiphany. I figured it all out. And I am going to tell you.
So, this entry will definitely fall under the category of “Self-absorbed Annals of ME”.
But, come on, the last one was about you guys, so don’t pout.

Okay, so my epiphany….

IF I get up off the couch/bed/chair…I have to DO something. If I DO something, it will not involve a doctor/hospital/the work of saving Haley. It will be something NEW. A NEW routine. Even just housework….done differently if not packing for/unpacking from our many trips to Atlanta. Okay, so stay with me here….IF I adopt a NEW routine, then I am giving up my OLD one. This means I am trading my OLD life for a NEW one.
A new one that does not include Haley.

It means accepting that she is gone from my life, my routine forever. And, I can’t do that. I am not ready to do that. It doesn’t mean I don’t KNOW that in my head, I just don’t want it to be true, so I am not ready to get up and go on. I suppose one day I will be, but not now, not today.

However, I can have a day or two of new normalcy. As long as it doesn’t feel like a whole NEW routine. Here is where it is a bit confusing…even for me.

Yesterday, for example, was Nick’s birthday. We had our close friends here, went for a walk in the neighborhood, I made enchiladas (per Nick’s request), we ate together, laughed, had a great time, and it was fine. I missed Haley, and thought of her often, but I was okay. BUT, I could not plan a whole week like that. A normal week….without Haley. Does that even make sense?

And the ironic part is….this is the life I always dreamed of…a loving husband, healthy, happy kids, great church and friends….but I don’t want it anymore. I want my OLD life back, even with a sick child. Even with all the stress and inconvenience. Even with the high price, physically, emotionally and financially. I would do anything to have that life again.

“While Jesus was here on Earth, He offered prayers and pleadings, with a loud cry and tears, to the one who could deliver Him out of death. And God heard His prayers, because of His reverence for God. So, even though Jesus was God’s son, He learned obedience from the things He suffered.” Hebrews 5:7-8

Cheryl

Friday, June 16, 2006 7:13 PM CDT

I had meant for this entry to be about my Colonoscopy today (Betcha can’t wait for that one), but then read my guestbook and had to write this instead.

Sometimes I think my thoughts here are a little too “real”. I read it back to myself and think, “Yikes! That woman is depressing!” And then I read your guestbook entries and I know why I do this. You all encourage me so much. So, I need to say “thank you” and really acknowledge what you, my friends, mean to me.

To my fellow “angel” moms – Oh what a crappy club to belong to! But you encourage me with your words, you humble me with your generosity, and you inspire me with your courage.
I know you know what I mean when I say…”I could have written that!!”

Kyle’s mom who wonders if I am afraid I’ll forget. Absolutely. How painful it is to remember, and how much more painful to NOT remember. I write memories down so not only will I not forget…my other children won’t either. But, it is inevitable that little things will be forgotten, and it terrifies me.

Jonathan’s mom who wondered how it was possible to feel so much pain, and still be alive. I have thought that so often myself.
Emerald’s mom who commiserates on my feelings of not having made myself heard.
So many others who write and email. I love you guys. I AM you guys!

To my “liver moms” – I have left your world forever, and yet you never left mine. Even though I know I personify your worst nightmare, you have hung right in there with me every step of the way. It takes strength and generosity of spirit to reach out to some one who has lost a child. I am grateful that God has put all of you in my path. I need each and every one of you.

To the CB families - I have been a part of this community for over three years now, and I still am in awe of what a difference we make in each others lives. I can always ask my fellow CB moms and dads for help and advice, and I can always count on their support. What an amazing group of people you are!

And especially for this week to Terry and Kat for changing my music (turn on your speakers!), and Lisa for the slide show. Like I needed another reason to cry! It is SO beautiful. Lisa - you keep this page looking so beautiful, I am sure everyone thinks *I* change pictures, backgrounds borders...but you and I know the truth :)

Other CB families encourage me so much in my faith. God does His BEST work with the broken and vulnerable. I have seen that over and over.

And lastly, to all who have supported my dream (And, I am sure, Haley’s) of the foundation to honor her. You have all worked so hard, and then stepped back and let the light shine solely on Haley’s memory. You can never know what it means for me to watch this unfold. Haley would be so pleased. She would be tickled pink.

Humbled by His love, and yours,
Cheryl

Wednesday, June 14, 2006 9:56 AM CDT

I am going to try journaling here pretty much every day….more journaling than “updates”. So, if you are a ‘regular” you may want to check back more often.

I look at my daughter’s beautiful face right above this writing, and I can remember so much.
Her hair was still braided from our recent “Make-a-Wish” trip. She had had it done at Sea World. I look at her smile and remember the dentist said she would need braces soon.

I remember the day we bought that shirt, she had a black one just like it.
I look at the toy in her hand and I know we bought that for her brother at Cracker Barrel, during one of our many trips to Atlanta.
To others, they are just pictures. To me, they are a page from a much happier life.
I found a picture of Haley on Nick’s cell phone. One I hadn’t seen before. She was in a hospital gown, sitting in the waiting room of the Echo dept. She had two scans that day, a bubble echo, and a CT of the chest. Scans just 5 days before she died, that told us nothing.
How can that be? Normal lungs don’t just hemorrhage five days later.

Sometimes, I am so angry; I feel someone has to be to blame. Someone has to be accountable. I want to make lists of the mistakes made and throw them in the faces of anyone involved, and scream at them, “You can’t take this back…there are no ‘do-overs’ in death”. And my daughter died. My precious, talented little girl who made my life complete, died.

And, yes, I know I will see her again in Heaven. But I don’t want to wait that long. I have always been more the ‘instant gratification’ type. But, I can’t sit around wishing to die, I have three other children who need and depend on me. Although, my husband and I know I will go first. He is just healthier…and stronger. So, I made him promise when I die, to put my ashes with Haley’s and then scatter them at the beach. I told him he could join us too, we would wait. :)

I miss her. I look at that picture, and I remember stroking her face, and kissing her cheeks, they were always so soft and warm. I can remember how she felt wearing that shirt, how the sparkly stuff would stick to me sometimes. She was so beautiful, I loved just looking at her. She was so warm and affectionate. I loved touching and snuggling with her. She never felt too old for that. I miss her. Good God, I miss her.

I can’t imagine any other thing that has the power of grief. What else could make me cry so many tears every single day, over eight months later?

Does Joy really come in the morning? I am still waiting.

Monday, June 12, 2006 12:44 AM CDT

One Decision

How many medical decisions were made for Haley, by us, by many, many doctors in the last five years of her life. Thousands. And it haunts me that maybe, just maybe, one of these decisions could have sent us down a different road.

What if, in December of 2000, when we first noted her eyes seemed a little yellow, we had drawn liver enzymes?

What if, when she was admitted in Jan of 2001, with fever, cough, elevated LFT’s (liver function tests), it had occurred to SOMEONE that she had the flu. Especially after tests showed pneumonia and bone marrow suppression. Especially since it was during flu season and we had an Infectious disease specialist involved. What if her flu had been treated before she had became so ill?

What if, at Duke, they had chosen to ponder WHY her LFT’s had gotten so high, and asked for a GI consult?

What if, when we returned home, and her LFT’s had continued to climb, and I was taking her to the doctor twice a week, they had gotten her in to see a GI specialist? What if they hadn’t been so content to “watch the trend” of her labs and actually DID something?

What if her liver disease had been diagnosed more quickly, and the seven extra weeks of damage were not done?

What if we had never left our original transplant center (Cincinnatti)?

What if we had never tried the Remicaid for joint pain? Would she still have gotten lupus?

What if we never had the iron infusion? Would she sill have had the brain bleed the next day?

What if, the day they listed her for transplant, we argued emphatically for living related donor?

What if I had insisted on a pulmonary consult? What if I had insisted on admission to search for answers to her respiratory issues?

What if they had never lost her original pulmonary function tests?

What if I had screamed louder that her liver was SICK…no matter what her “numbers” looked like, no matter what her “score” was on the stupid PELD system?

What if I had trusted my instincts, and told everyone who would listen that she was going to die soon without a liver?

What if I never worried about hurting a doctor’s feelings, or what they would think of me if I said what I was thinking?

What if we had stayed in Atlanta the week Haley died?

What if, when I took her to the doctor, I had asked for an antibiotic?

Better yet, what if I had asked for her to be admitted, and treated for her fever?

What if we had admiited and treated her for every fever? That is was just her protocol?

What if I had called the Atlanta doc myself, and not let the doctor here do it? Would he have heard my desperation? Would he have understood the seriousness?

What if, the second she was admitted, I had insisted on a central line, and IV antibiotics?

What if, the doctor had thought of IV antibiotics himself, several hours sooner?

What if they had not wasted so much time on doing a CT of her head, that I knew she didn’t need?

What if we had taken her to Johnson City Medical Center?

I wish I had a chance to do over all of those decisions. I wish everyone involved had tried their very best for Haley. Many did, but many others did not.

Someone involved, very peripherally, with her care, made the comment that “We did all we could to save her.”
But, I disagree.
Some of her doctors did their best to save her. Others did nothing.
If everyone had done their very best, she would still be here.
Let’s be honest, mistakes were made, errors in judgement were made, the severity of her illness was underestimated at times. Not even I can say I did all I could to save her.
But, I was not objective. I wanted to be able to leave the medical decisions in the hands of the professionals, and just be her mom.
That is one mistake I would NOT make again.

Some mistakes are more costly than others.

Wednesday, June 7, 2006 2:46 PM CDT

I have figured out that the number of OC episodes I watch, directly correlates to my level of depression. Today I watched four. Ouch. Four episodes of The OC…all in a row. Yea…that hurts even to admit.

My mood was probably influenced by my trips to BOTH Wal-mart and the grocery store. What was I thinking? I couldn’t wait to get home, under my couch blanket, and get that TV humming with teenage angst.

Wal-mart rattled me a bit (who knows why..sometimes I can identify a trigger, and sometimes it is just free-floating anxiety), and then I had to pick up a prescription (no comment) and chicken for dinner. That is all. That is it. Drugs and chicken. Not so hard, huh? I left with 6 grocery sacks of stuff, and NO CHICKEN!! That is what I went there for…how hard is it to remember the one main thing you need…for dinner!

I realized as soon as I got in the car, and of course got completely flustered..because that is what I do..and started shaking, and spilling stuff..couldn’t get my keys in the ignition, hit the horn and shocked a poor old lady. That is what I do. I go to a Doctor’s appt. the wrong day, I forget to pay our bills, I listen to answering machine messages and still don’t know who called ten minutes later, I forget that I said Nick could spend the night somewhere, and search for him for thirty minutes until I finally remember, I send identical emails two days in a row, I forget to eat lunch…….my list is endless. I am the definition of a flake-y, flustered, forgetful, disorganized person.

I lost my car three times in Atlanta. Not once, THREE times. Three times I had to wander many levels of the parking garage/lot hitting the “lock” button, trying to hear my horn go off. Lisa, with me once, said “Just hit the panic button..who cares who hears” So we did, and we heard it, but still couldn’t find it. It was, easily, the most physical activity I have had in a year!

I dropped my cell phone out the car door…and as it broke and shattered, spilled coke on it, and watched it crackle. And I am in Georgia…I don’t know where a Verizon store is, so I got the gi-normous “Mall of Georgia”. Sixteen thousand cell phone stores in that mall…except a Verizon. I finally found a circuit City..I am so beside myself, I just blurt out “Any cell phone…just as fast as you can!” She looked at me like I was nuts…which I was.
Because that is what I do, that is who I am.

One day, a few years ago, I came home from church and quickly changed out of my church clothes. I pulled on shorts and a t-shirt and was heading out to Kmart, when I heard explosive laughter behind me. Haley had her hand over her mouth, eyes bulging. My husband was pointing and laughing, at something apparently on my behind. “What?” I’m saying, twisting my neck to see what is on my pants. Finally, I reach behind me, and feel….my underwear. The dog had chewed off the entire backside of my pants…and I’m talking both cheeks. And there I was, oblivious, on my way out the door. I often wonder if anyone at Kmart would have stopped me and said something.

Maybe it is a form of adult ADD. I don’t know…maybe it is a genetic defect. Most of the time I can brush it off and laugh at it, but sometimes it makes me feel downright stupid.
And forgetful. And stupid…..and klutzy…and did I say stupid?

So, to recap, I feel depressed and stupid today.

Oh well, back to the O.C...
Cheryl

Sunday, June 4, 2006 4:57 PM CDT

I know I promised you “The Self Absorbed Annals of Me”, but instead I think you may get the “The Sermon From The Couch.”

I have a feeling I may be jumping from topic to topic today, since, as always, I have a lot on my mind. So to those of you who may get bored with the beginning…DON’T SKIP…because, just like a tootsie pop, there may be a very cool surprise in the middle! And, of course, being self absorbed, I want to think that you hang on my every word…even if I have to bribe you to get you there!

A lot of you know I went to Atlanta, unexpectedly, last week. Some of you know that was a very difficult trip to make, as it was my first time back without Haley…but more on all that later…

First, my sermon.

I haven’t been to church for over two months. In fact in the eight month since Haley’s death, I have probably been only 5 or 6 times. I have mentioned many times, that although my faith is strong, church is hard for me. It is so emotional, and I just get tired of crying all the time.
BUT, today we went.

And the name of the sermon was…..

“Why Is This Happening To Me?”

How perfect is that? Now, I heard a sermon with a similar name on TV not long ago, and I have to admit (a bit ashamedly) that it irritated me. The preacher was talking about people not getting along with their bosses, not getting a promotion, not making enough money, problems with in-laws….you get the picture. And (selfishly, I admit), I am thinking….”I would live naked on the street with OJ Simpson as my father in law, if I could have my daughter back.” This preacher basically said all trials are created equal..that we all have them and have to “choose” to be happy.

So, it gets me thinking…will I like this sermon, or will it upset me? Knowing our amazing pastor, and his amazing ability to get to simple and powerful truths, I was hoping it was the latter..and it was.
It was exactly what I needed to hear, at exactly the right time….at one of the few times I had been to church in months. God is good.

This message was based on James 1:1-12. And I encourage every one of you to read it. One of my favorite books of the Bible, and one I sought out often during Haley’s illness.

In summary (from the bulletin notes), the message is this:

Trials are inevitable.
James doesn’t say “IF” you face trials, he says “WHEN”.
Trials bring about maturity.
Our question should be, “How can I cope with trouble and at the same time maintain my testimony?” (Haley mastered that maturity amazingly well)
Trials can lead us pure joy (Ok, working on that one, trusting it’s true, but let’s skip ahead)
Trials can produce perseverance.
(I love this part)
“God wants us to be complete; He wants us to have “stronger backs”, but most of us have no desire to go to the spiritual gym, and endure the trials”

Trials overwhelm us because
1. We lack wisdom, and
2. We are prone to doubt
And finally…The triumph that results from trials..
God will bless you. He will test your faith, refine your motives, and lead you to even greater joy.
I especially love the “refine your motives”….couldn’t we all occasionally use a little motive refining?

Ok, end of sermon…And all God’s people said “AMEN”!!

So, my trip to Atlanta…since I have already been a bit long-winded, I will give you the condensed version.
After talking to Lisa Monday night, I just felt compelled to go to Atlanta, to see if I could help. After all, if the President of Haley’s Foundation doesn’t deserve a little “miracle mail” delivered in person, who does?
Aiden was, of course, adorable, and it was so good to see them both.
I held it together very well, while talking to people, and cried like crazy alone in my car. I spoke to our main doctor twice, and aside from a little crazy rambling, managed to get through it with very few tears, but after, I went to the parking garage and cried so hard.

BUT, it wasn’t about me, this trip was about Aiden, and hopefully I lifted Lisa’s spirits a bit. It is hard to be the mom of the “mystery child”…symptoms that no one can figure out. She is an amazing mom, Aiden is lucky to have her.
And Aiden was amazing too. He was happy and playing constantly. He even had me trying to hide under the sink during a game of hide and seek! I always feel such a bond between him and Haley, I know, of all people, she is watching over him. I can just hear her saying…”There goes the happiest kid in the world.”

I also had a chance to see Steven, his sister Kim, Mindy, and best of all (no offense, guys) little Jordan Haley. Six weeks old, and gorgeous! Thanks you guys for going out of your way to see me! And to my friends in Atlanta I missed this time….well next time for sure.

I have some funny stories about my trip, and my children…but I will save it for next time.
I love you guys. Thanks for checking on us,
Cheryl

Friday, May 26, 2006 12:56 AM CDT

Kendall (7 years old, my daughter who put the “boy” in the “tomboy”) “Mom, want me to make you a fruit salad?”

Mom (absentmindedly, not looking up from season finale of “conviction”) Mmm Sure.

Kendall (wisely) “Will you eat it?”

Mom (sensing a whole new level of commitment) “Umm..sure”

Kendall (going in for the kill) “Promise?”

Mom (Crap, I’m going to have to eat this) “Ok, but you have to let me cut your fingernails, wash your hands with soap and water, and change out of that shirt you have been digging through the mud in.”

Kendall submits to all my demands and five minutes later, I have a bowl of fruit I can hardly describe. Believe me when I say, presentation DOES matter. I have a cut up banana on the bottom of the bowl, four whole strawberries, stems and all, and a large apple cut exactly in half, smushing the rest of the fruit.
And, I realize belatedly, I didn’t tell her she had to wash the fruit! Luckily for me, she has the attention span of a gnat, and I am able to hide the fruit in several different trash cans.

Last week we had Logan’s 11th birthday party. I knew it would be a hard night for me on so many different levels. Haley is forever 11. And she would have loved this party. Kids getting to pretend to be grown up. A disco dance floor, a DJ, all the cool music, a bazillion kids, all moving in packs, whispering secrets about who liked who.

Logan has had a ‘crush’ for many months now, on a cute little girl. Coincidentally her name is Haley also. They hung out together, and even danced a stiff-armed-I-am-not-really-touching-you slow dance. It was precious.
Last night Logan told me he dreamed of both Haley’s. His sister whispered something in his friend’s ear, who turned around and said “No Way!” I wonder what secret our Haley had for her brother’s 6th grade girlfriend.

So, other news… I have been so sad lately..not exactly a newsflash, I guess. But, I’ll save that for next week. We’ll call it “The Self Absorbed Annals of Me.” Bet you can’t wait!

This week, I will tell you our Foundation efforts continue to move forward. We can unveil our Foundation website! And if you would be willing to place a “button” on your own website, let me know…I will send you the code. “Code” is probably the wrong word in computer speak…but hopefully you know what I mean.

Many prayers and Hugs to my dear friends Lisa and Kristie, two of the most selfless people I know, dealing with their own stressors, good and bad, in a way that continues to inspire me. I love you guys!

I was pretty successful at ignoring Mother’s day this year, but it was hard, and yet I smiled at so many things. I made a list in my head one night of things I never thought I would ever utter (before I became a mom)

1. Stop biting the dog.

2. Why are there rocks in my freezer?

3. I am NOT taking care of you when you are paralyzed from jumping off the roof!! (I am especially proud of that one)

4. Who put pine cones in my underwear drawer?

5. Do not let the dog drink milk out of your mouth.

6. No, the dog is NOT enjoying jumping on the trampoline!

7. I am going to open a can of whup a** on you (That one is actually Bruce’s) (In fact, Bruce could not have a list here, our kids would be taken away!)

8. When Dr Phil is speaking, no one else is allowed to talk. Come on, you guys know that!!

9. Stop breaking eggs on the dog’s back!
(Unfortunately, I did not say it intil 11 eggs were broken, then ingested by the chocolate lab. A night of explosive diarrhea ensued.
I had a 2 year old, a 2 month old, a lab with diarrhea in sub zero temps, so she had to stay inside, AND a husband on a ski vacation in Colorado, who would call home to COMPLAIN to me how bored he was and how much he missed us!) Obviously, that is a whole entry in itself.

10. No more “Science experiments” without asking first!! Who do you think has to clean this up?? The science experiment fairies??
Yea, they live with the same fairies who magically make your beds and put clean clothes in your drawers, and snacks in your cupboards….and magically transport your dirty popcorn bowls from your rooms to the dishwasher..and back to the cupboards.

And how about those fairies who make sure you wake up in your bed in the morning in pajamas, no matter how you fell asleep at night, the ones who kiss your heads, and pray to God for you every night, the ones who would fight lions, and tigers, and bears for you, who would put your well being and safety above their own in every single instance, the ones whose love you cannot imagine….not until you have been a fairy yourself.
I love you, my children…..I never wanted anything more in my whole life than just to be your mom.

Sunday, May 21, 2006 7:47 PM CDT

If you have lived long enough, if you are old enough, unless you are one of the unusual people for whom life has not yet kicked you in the gut, I think you understand how senseless this world seems. It feels useless to try and make sense of things.
I am watching an MSNBC special called “Saving Carrick” about a girl whose family loves her so much and would do anything to help her, but Carrick chooses to be a heroin addict. Why?

So many people don’t appreciate their lives, so many people mistreat their children, so many abortions, and then there are SO many of us who would walk through fire for their kids to just have a chance. Or to just catch a break. For five years, Haley never caught a break.
Our doctor visits were always bad news. I can’t remember ever having a positive visit with a doctor. The best we ever got was knowing she was stable for the moment, but there was no chance she wouldn’t, at some point, get worse. Where is the sense in that? In what universe is that even remotely fair?

I can think of thousands of people less deserving to live than my daughter. Thousands just in the prisons. So, why? Why, as Billy Joel so eloquently put it, do the good die young? Well, the Bible says because death is a reward, not a punishment. A difficult concept for us mere mortals

. It is so intensely instinctive to do everything to live, to extend our lives, to reverse aging, to look young, to feel young, to BE young. People do everything and anything to NOT die. My own grandmother, well into her 80’s wanted treatment for breast cancer. A decision her doctors wisely talked her out of. She died at age 93…not of cancer. Some people even freeze their brains in hopes to live again someday.

I, because of a rogue polyp, am supposed to have a colonoscopy each year. It has been 3 years. Obviously, with all that has been happening, not extremely high on the priority list. What I found amusing, in my twisted way, is when I tried to schedule it for the week of June 9th, the doctor said he wanted it on the 2nd; his nurse said the 9th was too far off.
Too far off? I am two years late already….and I have quite the fatalistic thinking of what is going to happen is going to happen…It is just an inconvenient little blip on my radar.

But I am digressing a bit…

What I don’t really get, is my own purpose here. I know Haley’s Foundation could be so huge, and help so many families….what I don’t get is why me? I am not even remotely the best person for this job. This is important. Why not Haley? No one who ever met Haley ever forgot her.
Talk about making an impact, making a difference…..she did it in a way I will never be able to.
I am not a speaker, I don’t have her talent for singing, I am not great at organizing or fundraising, my projects always seem to go nowhere. I am not good at small talk, or schmoozing, or even remembering people’s names. Why trust me with something so important? That is truly a mystery.

I am not a strong person. My purpose for so long was in saving Haley. It was what I lived for…and I lost her. And in losing her, I have lost my purpose.
And I am afraid to take on a new purpose, I can’t survive failing again.

And although this all sounds quite depressing, my faith is intact and as unshakable as ever. It is always there….in fact it is the ONLY thing that makes sense in my life. Thank God for….God.

So, what to do? I need to pray more, trust more. Give over control.
It is good for you all to know that even Christians struggle. Even Christians cry on their closet floors, and question God’s plan.

Paul (of the Bible) sat in a prison cell for years openly questioning God, but never doubting His plan for Paul’s life.
At least I am serving my sentence from my comfortable sofa with my TV and my chocolate.

Next time, a more upbeat update, I promise. Just missing my girl tonight…..

Cheryl

Thursday, May 18, 2006 7:25 PM CDT

I haven’t updated this week. It has been a weird week. I have felt…well….weird. Just kind of this jumble of weird feelings that have been confusing, and …umm…weird.

I have an amazing command of the written word, do I not? Not to mention a great handle on my feelings.

Why weird? Not sure.

I have changed all my medications around. And it is POSSIBLE that these mind altering drugs have had an impact on the weirdness of how I am feeling.

I realized last week, in a rare moment of clarity, that I was feeling NO better emotionally, and MUCH worse physically on all these medicines.
(My husband just read over my shoulder and said “Could you sound any crazier??” Umm, I don’t think so, at least not as an outpatient)

Anyway, back to the medicine….I stopped three out of four of the antidepressants, now I am back just taking one…like the rest of...well…pretty much everyone I know! I am still taking two things to help me sleep at night…think Patrick Kennedy…But, don’t worry, Bruce hides the car keys at night.

SO, all of that to say, I feel really weird, kind of up one minute, down the next. I think my brain is becoming a bit “undrugged”. Sort of like waking the sleeping giant. I am just hoping that more and worse grief is not the giant…I am not sure how much more I can take.

Today was the last day of school. And I think my kids may be expecting me to do more than lying on the sofa watching Tivo’d episodes of Survivor. Selfish little goons.
I think someone even mumbled “Dollywood”. Pray for me. In fact, pray for all who enter Dollywood. It’s a special sort of place.

We are having a birthday party tomorrow night for Logan. It is at a middle school dance club. Boys, girls,….and a DJ. One of the many tragedies of losing a child is you dread the very events that should make life enjoyable. Life, instead, becomes something to avoid.

Avoidance becomes an art form. How to dash past certain TV channels, turn your head at the right moments at the grocery store, quickly avert your eyes at the unexpected picture or ad….how certain foods never enter the house again, and birthday parties, once loved, are something to simply endure, for the sake of others. A playground, the pool, a theme park…for others mean fun…For me….Sweet torture.

I am just hoping I survive the summer…..

Hanging on by my fingernails,
Cheryl

Friday, May 12, 2006 10:16 AM CDT

Well, this week has been a total suck-fest. Is that a bad word? Probably is. I wouldn’t let my kids say it, but it pretty well sums it up better than any other word I can think of.
I don’t even want to talk about it, so lucky reader; you get another day of……

“Random Thoughts”

1. I was watching Supernanny the other night, and it struck me that I am observing, rather than participating in life. Which is exactly what she does at the beginning of each show. And, where do they get these kids? I have never known ANYBODY whose children act like that. A tantrum here and there maybe….but swearing and hitting. None of my kids have ever hit or kicked me. Although, when Logan was 11 months old, he did bite my shoulder, and believe me, I still bring that up to him on a regular basis.

2. You know “Earl” from “My name is Earl”? He is a Scientologist. Now, I don’t want to bash anyone’s religion, but they are….well…..different. It taints the show for me a little.

3. I fell in the bathroom the other night. Middle of the night. Hit my back hard on the commode. Bruce heard me moaning and came running downstairs. I had a most impressive bruise. I fell because I did not respect the sticker on the Ambien bottle that says “May cause dizziness” and I thought I could just get on and off the toilet at will. Silly me. That was probably way too much information.

4. I had told Kendall one day last week that I would play “Spongebob Life” with her the next morning. The very first words out of her mouth the next morning were “You promised to pay Spongebob life” “I said, Boy you thought of that fast”, and she said, “I dreamed about it last night”. I have so neglected this poor child that she is DREAMING
about me playing a board game with her. Mother of the year.

5. Kendall said to me the other day, “mommy, why are your eyes always leaking?”

6. My new guilty pleasure is “Big Love” on HBO. I am offended by the whole premise, and yet oddly fascinated. And the show is so well written, it just sucks you in. I could do without the graphic love scene though.

7. Actually two guilty pleasures. I am watching season one of “The O.C.”. A show I banned my children from watching without ever seeing it.

8. Speaking of banned TV shows, we finally reeled the family in after Kendall wrote me a note, saying, “Bring me beer and dope, Love Homer.” Bruce said maybe she was watching too much Simpson’s. Uhhhhhh Ya think? So, much to my children horror, I made a poster for their TV room listing all banned items so there would be no mistake. You know what I mean….”But, you didn’t say I couldn’t watch Marilyn Manson on MTV”. Our banned list is long…it is amazing how much they CAN’T watch. Some whole channels are banned..MTV, Comedy Channel, any movie on cable higher than PG. They were mad at first, but they have adapted pretty well.

9. So, five months after we moved in, our next door neighbors are leaving. I am just hoping it doesn’t have anything to do with two barking dogs, or two boys who like to practice playing their trumpets on our back deck.

10. The smoke alarm went off, and Logan said, “That means lunch is ready”.

Well, I hear a dog barking….I better go take care of it.

Hugs!
Cheryl

Tuesday, May 9, 2006 12:15 AM CDT

I was trying to think of a "lighter" update for today, but I am just not feeling light hearted. In fact, I am heavy hearted. This is such a difficult road that God has chosen for us. I guess one day I will know why.

I was at Kmart yesterday and the check out girl mistook Kendall for a boy. Now, if you have ever seen how she dresses you would not be surprised. But as a girl, she looks a little rough around the edges, as a boy, she would look like a miniature biker kid or something. I mean her hair is down to her shoulders!

Anyway, it made me think of Haley. Kendall has always been like that. Very particular about what she wears, and she wants the same thing over and over. She has even gotten in trouble for digging through the dirty laundry for a favorite T-shirt. When she was 4, she had a pair of plaid pants that she loved. She wore them constantly, with the most hideous shirt combinations. One day, as I was fussing about it, Haley looked at me and said, dead pan-sarcastic, "Mom, you KNOW plaid goes with everything." It became a long running joke in our house. Although, now it makes us sad. Funny how what used to make us laugh now makes us cry.

Our foundation is still coming along. It is so much work, and a lot of waiting around for the lawyer to do his thing :)
I don't really want to unleash it to the public until it is ready, but it is going to help chronically ill children. Our slogan is "Helping....One Child at a Time." It will have a personal touch, a Haley touch.

Well, I don't really have much to say today.

"When Jesus was here on Earth, He offered prayers and pleadings, with a loud cry and tears, to the one who could deliver Him from death. And God heard His prayers because of His reverence for God. So even though Jesus was God¡¦s son, He learned obedience from the things He suffered." Hebrews 5:7-8

Learning obedience,
Cheryl

Friday, May 5, 2006 10:18 AM CDT

I wish magic was real. I wish there was a Santa Clause. I wish, like Samantha on Bewitched, I could twitch my nose and solve everyone’s problems. I wish Cinderella really did live in a castle somewhere, and that Hogwarts Academy was a real place. I wish there were real Superheroes. And they could fly, or make themselves invisible.

I wish, like Freaky Friday, I could switch places with someone, just for a little while. I wish I had a time machine. I wish I could be a child again, just for awhile, to remember what it was like to believe in magic.

I wish on January 22, 2001, Haley’s sore throat and fever had just been the same thing millions of kids get, and not the beginning of the end of her life. I wish wishes could come true.

I read somewhere that there are a certain number of tears you must shed for your child.

It must be millions.

So sad today,
Cheryl

Monday, May 1, 2006 7:35 PM CDT

I had to go the grocery store. We had NO juice. Kendall apparently cannot live without juice.
I suggested ice water at dinner last night, and she looked at me like I was trying to give her cyanide.
I didn’t want to go to the store, because I was having a major crappy day already.

So, I go in the store, single minded about getting through it as quickly as possible. I buy some fruit, a salad, and chicken for dinner, and three thousand gallons of juice.

I am now in the check out line. Okay, here I am going to sound a little un-Christ like, and I am working on it, BUT I do not like the small talk the check out people try to lure me into.

I am, at heart, a polite person, so I try to just smile, respond as little as possible, and show, by my body language that I can do without their commenting on every thing I buy.

Well, I apparently entered the Laurel and Hardy line, because the lady and her bag boy had this unending routine of trying to make everything funny.

I am in a horrible mood; I am in sweat pants, one of Bruce’s T-shirts, and my son’s gray hoodie. I am even wearing black clogs with sweat pants.

Top that off with 2 hours of crying and you can imagine no make up, puffy face. I would have thought my appearance alone would have scared them into silence.

Now, both of these people had southern accents, not the kind that sounds like English, but the kind where every word is given several extra syllables and dragged out so long it makes your teeth hurt.

She scanned my bag of tangerines. (They were in a fishnet type bag)

Her: "You really should put these in a plastic bag. One day I lifted one up, and the whole bottom fell out."

Me: (Tight semi polite smile) "Hmm"

Her: "Yep, it was a real mess."

Bag Boy: "Well, I sure don’t want to go on an orange run"

Her: "Huh?"

Bag Boy: "I don’t feel like an orange run today."

Her: "A what?"

Bag boy: "An orange run."

Her: "What?"

Bag Boy: "An orange run"

Her: "One more time?"

At this point, she has stopped scanning, so as to give this important topic her full attention.
I cannot stand it any longer and I say, annunciating every word.

Me: "He does not want to chase oranges all over the store!!!!"

Her” "OHHH"

Bag Boy: "Yeah, an orange run."

Around this time, she pulls a tuna package wedged in the bars of the bottom of the cart.
It is one of those aluminum kinds you don’t have to drain.

Her: "Is this yours?"

Me: "No."

Her: "Look, it is opened and eaten."

Bag Boy "Guess somebody smelled tuna and couldn’t help themselves."

Her: "Yea, somebody was hungry."

They look at each other and laugh out loud.

Him: "Well, it wasn’t the first time."

Her: "And it won’t be the last."

By now, I am thinking, no matter how bad I look, surely they don’t think I opened a freeze dried pack of tuna, and sucked it down right there in the store.
I have never eaten so much as a grape in a grocery store!

So, I beat it out of there. He wanted to help me out to my car so bad, I practically had to wrestle the cart from him, and the lady is standing there watching us, saying. "We are only trying to help."

Bruce and I not “yard people”. We don’t like to plant, water mow, dig, sow, weed, till, …well you get the idea.
When we bought this house in December, the owner told me it had a rose garden.
I thought, you mean it HAD a rose garden.
I kill any plant that dares to live on my property. Not on purpose, of course.
Today, I walked out to the backyard and they were in full bloom…and they were yellow and pink!

For those of you who know Haley, you know these were her favorite colors and flowers. She had planned to carry pink and yellow roses on her wedding day.

So, the Foundation is really coming together behind the scenes! We just need to finish up the legal stuff and we can begin going full blast!

We made a brochure, I would love to put it here so you can see it, but I don’t know how….but her foundation web page will be up and running soon.

Emotionally, I don’t know. It breaks my heart every day, all over again, to think of her not being here with me. It is the most horrible thing I could have imagined, and it happened to me.

“Blessed are those who mourn, for they will be comforted.” Matthew 5:4

Love and prayers,
Cheryl

Monday, April 24, 2006 11:49 AM CDT

I had a not-so-great week. More about all that later. Right now, I want to share some lighter side stuff.

I was trying to get Kendall to work on her math the other day. She said, or rather she whined to me "But it's weird...it gets inside my head." Hmmm. isn't that the point of learning?

First Love
Logan has a crush on the cutest little girl, who is LUCKY to have this great boy interested..anyway, our conversation about it.

Me: "How do you know she likes you?"

Him: "I asked her."

Me: "WHAT!! You just asked her?" (My surprise here is justified, as his father is the shyest man on the face of the Earth, and after dropping a thousand not-so subtle hints, I finally had to ask HIM out)

Him: "Yes, I just said, do you think we are more than friends, and she said yes."

Me: "What would you have done if she had said No?"

Him: "Run away!" (There is my husband's son!)

My other son, who will be 15 in June, told me a junior wanted him to go to prom this weekend. (In my day, it was social suicide for a junior to even be seen with a freshman boy...much less takes him to a dance.) He said, "Well I told her no, because I am grounded." (A semi permanent condition for this particular child.
I told him, "Tell her No because you are not allowed to date until you are 16!" Why does a 14 year old need to go to the prom. He can wait till he is a junior like every one else. He is in such a hurry to grow up.

Haley (although she pretended she didn't) used to love "blonde" jokes. We were remembering a few of her favorites last night.

A blonde, a brunette, and a red head were running from the police. They found a barn and hid in burlap bags. The police kicked the red heads bag, she said "ruff ruff". They then kicked the brunettes bag, she said "Meow". They walked over and kicked the blondes bag, she said "Po-ta-toes".

Now for my bad week.
I went to church on Sunday, which is difficult for me. One of the first songs they sang was one they sang at Haley's funeral. It was all over for me right then. I stayed through the sermon (which was very good), and snuck out before church ended. I don't think anyone even saw me there!
All of my "helpers" are out of town this week, so I have had to pick up the boys at school, another difficult task for me. The car, the schools, the kids, or just all of it, I don't know why, but it's hard.

As I walked across the parking lot from church, I just remembered how many times I had walked to my car with her hand in mine.
Haley was a hand holder. She was still young enough not to be self conscious about it.
And she always held my hand, at the mall, at the hospital, anytime we were outside.
It is heart wrenching to think I can never hold her hand again. How can you miss so badly something that was so simple?
But I knew that hand. I could have been blindfolded and found her hand out of a thousand. Her hand was special. People think the holidays are the worst...it is the every days that are the worst.

"The righteous pass away: The Godly often die before their time. And no one seems to care or wonder why. No one seems to understand that God is protecting them from the evil to come. For the Godly who die will rest in peace." Isaiah 57:1-2

Always Believing,
Cheryl

Wednesday, April 19, 2006 8:45 PM CDT

You guys did a great job! Thank you for blessing me with God’s beautiful scripture. filling Haley’s guestbook. There were 45 entries with scripture, and 284 visitors.
And if you were one of those who just stopped by to read, I pray it blessed you.

I have some wonderful and exciting news to share. A beautiful, healthy baby girl was born last night at 6:28PM to a family I very much claim as part of my own.
WELCOME …….. Jordan Haley Miller.
Congratulations to Kim and Matt, Uncle Steven, and the proud grandparents. Their TN family here, including our kids, cannot wait to start spoiling this special little girl.
Great job, Kim…we love you all.

I’m not going to share lots of feelings stuff today. I have been talking with the hospital about the night Haley died, and it is so difficult, I haven’t much left in that well right now.

I will, however, tell you the Foundation is moving right along. I am loving it so much. It all is unfolding so beautifully. And hopefully, very soon, we can invite the general public to the completed web page, and will have our start up printing done. We are still doing design and layout of things.

Are you all watching American Idol? Who is your favorite. I like Kathleen and Taylor.

I’ll try to update again this week, I know you are used to more witty and revealing repertoire, but I am bringing nothing to the table tonight. Sorry. Just too tired, I guess.

I love you guys though!!!!
God bless you all,
Cheryl

Saturday, April 15, 2006 8:06 PM CDT
After the christening of his baby brother in church,
Jason sobbed all the way home in the back seat of the car.
His father asked him three times what was wrong.
Finally, the boy replied,
"That preacher said he wanted us brought up in a
Christian home, and I wanted to stay with you guys."
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I asked Kendall what she wanted to be when she grew up.
Kendall: “An Oscar Mayer Weiner!”

When Nick was in first grade, he came racing into my room screaming, Mommy! You HAVE to buy Revlon lipstick. Completely perplexed, I said “Why?” He looks at me with that ‘DUH’ face, and said, importantly, “Because you can’t kiss it off.

Haley used to sit in her car seat between 2 and 3 years old, and just rock out to the praise music I had in. A particular song went like this
Our God is lifted up
Our God is lifted up
Our God is lifted up
ON HIGH!!!!!

Haley. In the backseat sang it like this...
He didn’t pick it up
He didn’t pick it up
He didn’t pick it up
ON TIME!!!!!

Tonight the kids were playing out side with Bruce. I called them for dinner. I said, “Five more minutes…Deal?
And you guessed it! Four voices in unison, “OR NO DEAL!”

Yes. Freaks all of them.

I really am going to depress and bore you a little later, but I have one more thing to share. Many of you have seen it, I am sure, but I though it was too cute too pass up

A first grade teacher had twenty-five students in her class and she
presented each child in her class the first half of a well known
proverb
and asked them to come up with the remainder of the proverb. It's hard
to believe these were actually done by first graders. Their insight may
surprise you. While reading these keep in mind that these are first
graders, 6-year-olds, because the last one is classic!

1. Don't change horses................................until they stop running.
2. Strike while the.......................................bug is close.
3. Its always darkest before........................Daylight Saving Time.
4. Never underestimate the power of......... termites.
5. You can lead a horse to water but.......... how?
6. Don't bite the hand that ............. looks dirty.
7. No news is.............................................impossible.
8. A miss is as good as a .......................... Mr.
9. You can't teach an old dog new ........... math.
10. If you lie down with dogs, you'll ......... stink in the morning.
11. Love all, trust....................................... me.
12. The pen is mightier than the ................ pigs.
13. An idle mind is......................................the best way to relax.
14. Where there's smoke there's................ pollution.
15. Happy the bride who............................gets all the presents.
16. A penny saved is.............. .................. not much.
17. Two's company, three's ............ the Musketeers
18. Don't put off till tomorrow what......... you put on to go to bed.
19. Laugh and the whole world laughs with you, cry and ....you have to blow your nose.
20. There are none as blind as ............... Stevie Wonder.
21. Children should be seen and not........ spanked or grounded.
22. If at first you don't succeed ........... get new batteries.
23. You get out of something only what you ...... see in the picture on the box.
24. When the blind lead the blind ............ get out of the way.

And the WINNER is.........

25. Better late than.....................................pregnant.

Okay, now for the important stuff. One of our very first CB friends were Kendrie. Everyone at CB knows and loves Kendrie and her whole family. Kristie has a dilemma that I struggle with myself about keeping this site running. So, if you want to read Kristie's post, link over there and giver her a hug from me, but you ARE on MY web site, so I am going to share my similar dilemma.

I have said before, but it bears repeating, this journal is just a snapshot into my day. It is what I am choosing to share. If I seem depressed, well I probably am…and I am probably tired, sad, and desperately trying to figure out how I can live my whole life with out Haley. It seems impossible most of the time. The loss seems insurr-mountable.

So, the dilemma is, when I write silly stuff , things where it sounds like we are having fun. Is that Disrespectful to Haley? Do people think, Oh good, now she is all better? (These are rhetorical questions…go ahead and look up rhetorical, I’ll wait…..)
Hhmhmhmhmhmhmhmhmhm Ready? Good, cause Big momma here is gonna rain some truth onto you, so grab your umbrella.

1. My daughter, who I LOVED SO SO Much died. I can never stroke her face, kiss her soft skin, ask her who her favorite idol is, I will never watch her jump on the trampoline again. She will never live in our new house. She (with her dad) will never fill our driveway with sidewalk chalk again. I will never get to decorate a room with her, or pick out new school clothes. I will never hear the phone ring, and have it be a boy. I will never see her go to high school or college. I will attend no graduations for Haley. And I will never have grandchildren from her. Even worse for me, she will never dance for me again, sing for me again, she will never have worm races with her friends. She will never complete The Lemony Snicket books, the 4th season of Gilmore Girls, Or the 10th season of Friends.

2. Ok…I am just getting started, but you get the idea, right. There is SO much to miss about Haley..it clearly will take me the rest of my life.

3. Every event we attend, every meal we out, every time we visit friends, go to the park, go shopping, no matter how much fun it should be, it will always be rife with sadness, because one of us is missing. We are not, and never will be whole again. None of us can go back. We are not the same people. My prayer is we are changing into better people. Haley deserves that.

4. But, you may see us smile or laugh out loud at something. While we smile and laugh, our hearts have thorns in it, reminding us, it isn’t anywhere near as funny or as happy as it would be if one wasn’t always missing.

5. BUT, in the midst of the sadness, life goes on all around us. We have three little kids around us who never let us run out of material.

6. And I suppose what I am saying is that , once you have been through the trauma of an ill or dying child, you learn to co-exist with lots of conflicting emotions.

7. It isn’t as up and down as it is ebb and flow…at least in my case.

ASSIGNMENT GUESTBOOK SIGNERS!!!
I have a project for you if you follow my site, and have a Bible, I have two short verses I want you to write in my guestbook…..For Haley.
And here is why. We read our Bibles individually for 15mins, then pray 15mins.
Last night Logan brought me these two verses, feeling very strong (in his sweet sensitive heart) they were for Haley.
Matthew Chapter 5, verse,8 and Matthew Chapter 5, verse,10 When you find them, please put them in the gustbook. How cool would that be to see dozens, hundreds, thousands, millions of scripture FOR Haley!!!!!! Okay, I know I am getting carried away, but I will look forward to next week. AND, I will reveal the grand total next time I post. I never look at my counter, but I am even going to write it down. Make me proud of you...pass on this link, Let's do it right, my friends :)

Love, prayers, sorrow and happiness all a part of our lives, so glad you guys are too!!
Happy Easter
Cheryl

ADDED EASTER MORNING:

HE IS RISEN!
HE IS RISEN INDEED!!!

Tuesday, April 11, 2006 7:12 PM CDT

“I will present my thank offerings to you.
For you have delivered me from death
And my feet from stumbling that I may walk before God
In the light of life” Psalm 56:12-13

So many parents have experiences after their child dies of feeling their presence, or getting “signs”. I totally believe them, and am often envious as I feel Haley’s absence much stronger than her presence.
Lately, this has bothered me more and more. Seems like every time I am in the car, I hear Point of Grace songs, or other songs we loved, but that can so easily just be coincidence. I don’t want to trick myself into seeing what is not there.

So, this was really on my mind the other day while I was driving to the grocery store. All of a sudden, like a blanket, I felt this wonderful presence. Although it didn’t necessarily feel like Haley, it was a feeling of love and peace that was as much physical as it was emotional. I remember thinking, well this I can not dismiss. I know what I felt.

At first I felt good, and then I felt really sad, just missing her so much.

That night I had a dream. I woke up (as usual) around 2:00AM, and stumbled downstairs to the sofa. This is pretty much my routine, as I sleep badly, and I don’t want to disturb Bruce with my restlessness. As I curled up on the couch, I woke up enough to think about that dream. I was too sleep deprived to really analyze it, but I thought I should write it down. I had a feeling it was important, and I knew I would forget it.

And I did forget it, until the next morning. I spotted the notebook and was amazed at my dream.

We were at an art fair at school. Everyone, including Haley. She was healthy and beautiful. Her hair was long and shiny, and she was running and playing with her friends, occasionally running to me for a quick hug. But, she was dead. And everyone knew it. But nothing was different about her. We just all knew she was dead. Someone asked me, “Now that Haley has died, don’t you miss her?” And I said “How can I miss her? She is right here. I am hugging her, and touching her, I am watching her play and laugh. She is here with me always.”

Haley was playing and playing. Running and skipping like she did before illness changed her life so much.
In my dream I was afraid that lady from the TV show “Medium” was going to come and take her, tell her to “cross over”. I thought, “No, maybe someday, but not today. Today we are happy.”

It was nice to be happy…if only for a minute, in my dreams. Thank you sweetheart. I miss you more than I have words to express.

Missing my sweet girl,
Cheryl

Wednesday, April 5, 2006 12:49 AM CDT

I went to Wal-Mart yesterday. I was a little apprehensive, as the last Wal-Mart visit culminated with me having a nervous breakdown in my walk in closet over a dress. If that is confusing, see the journal history. :)

But today was much more successful. I was able to buy under wear for my son, (more on that in a minute) and quite a few groceries. My only bad moment came when I was paying and trying over and over to swipe my credit card. The cashier finally rolled her eyes at me and said, "Umm ma'am, that's a Blockbuster card". In my defense, it WAS a gold Blockbuster card.

Ok, so about the under wear, one of my sons (who will remain unnamed as to protect his privacy) recently told me he had only two pairs of underwear. I was like "What!!", because I am definitely not doing laundry every two days. So, I say, "what do you do after a shower?" He said, "I just put them back on." EEWWW!!!! So, you can see why I had an actual underwear emergency on my hands.

You guys may remember my family doctor made me see a psychiatrist (Again, see journal history...you are really going to have to keep up). He put me on yet more, and stronger, antidepressants. I was a little confused about dosages, so I called him the other day. I was telling Bruce about it, and I said, "I called my psychiatrist today". He stopped me and said, "Wait! That is one of the four sentences I never wanted to hear come from my wife's mouth." So, in case you are wondering the other three are, "I am having an affair." "I have gained 100 pounds since the wedding." AND "Did my lawyer call you today?"

I was thinking today about my dog, Cara. She is a corgi and terribly spoiled. But, I have never seen a dog so totally devoted and loyal. If I leave a room, she follows. And it doesn't matter if I am just going to the bathroom, she waits outside the door.
And what is so funny is that sometimes I try to sneak out while she is sleeping, but those satellite dish ears perk up and off we go. I think she may be a secret service dog. I could just see her talking into her little ear mic.... "She is moving...she is on the move...oh, wait...no, she is just rolling over in bed."

So, I am really excited about Haley's Foundation. We have some amazing, dedicated people involved. We have established a board of directors and have a list of volunteers. I can add names to our volunteer list at any time, if anyone feels so led.
We are going to have her CD's revamped and professionally printed (no more sweat shop in my basement with my personal child laborers), have brochures made, a web site is being designed (www.thehaleyvincentfoundation.com), and fundraisers are being planned.
Our 501c3 is in the works, and we can begin accepting donations at any time.
Some of you have asked where you can send donations:
The Haley Vincent Foundation
304 Cain Drive
Blountville, TN 37617

This info will be included at the top of this site, along with a link to the website as soon as it is up and running. There will also be a paypal option on her web site.
I am excited about how many children and families we are going to be able to help.

I had a really cool experience this week, along with a dream. I'll share it next time, probably Sunday, as usual.

Please pray this week for Cam's family. Cam went to Heaven a few days ago.

Love you all,
Cheryl

Sunday, April 2, 2006 9:28 AM CDT

There is an old saying, "The worst of times brings out the best in people". That has been 100rue of our caringbridge community. When I feel my lowest, people come out of the woodwork, just to say, "I am thinking of you". You have no idea how much that means to me.

I have to say, however, that I have been surprised at how so many people have sort of dropped out of our lives. I thought people would be lining up to help with Haley's Foundation, yet I have only had a handful of responses.
It makes me sad, because Haley would have been the first one in line to help someone, especially a child, who was ill. She never said "No" to an opportunity to help.
I know people are busy with their own lives, jobs, kids etc...oh well, I'll keep trying.

On the positive side of Foundation news, we DO have a board in place and should have our charter in 2 to 4 weeks which means we can begin fundraising, and donations will be tax deductible.

I don't feel like writing too much today. Let me just say we are still looking for someone to help us put together a professional looking DVD to send to the media. I have written the letter that will accompany it. Instead of my usual update, I am going to post my letter. I would love to know what you all think of it, good or bad.

Sorry I seem to be in a cranky mood today....I still love you guys!! :)
Hugs, Cheryl

Media Release

My beautiful daughter, Haley, died on October 1st, 2005. She was 11 years old. Haley was smart, funny, and had an incredible gift for writing and singing music. As it became clear to her that God's plan for her was not to be a "normal" 11 year old, she embraced the reality of her life just as it was. She wrote songs for other children fighting chronic illnesses. We recorded them on CD's and gave them away by the hundreds. Her songs were such a hit, she was asked to sing at several American Liver Foundation fundraising events, she performed at a Tom Glavine event, and sang for the governor of Georgia for the Georgia Transplant Foundation.

She sang at fundraisers for Children's Healthcare of Atlanta, including singing The National Anthem at Turner Field. Through all of it, Haley managed to stay unaffected by her "celebrity". She was happiest just being a little girl, making up dances, talking, and playing with friends. Unfortunately she had little time for that.
Our medical world consumed our time and her illness slowly robbed her of her health and energy. In spite of her life threatening condition, Haley always put others ahead of herself. She always gave so much more than she took. She taught me more about courage and compassion than any child should ever have to know.

Haley and I shared everything. We had a small apartment in Atlanta for her many medical appointments. Although she much preferred our house in TN, complete with her daddy, 3 siblings, and 2 dogs, she never complained.
We made the trip so often; we had it down to a system. We drove thousands of miles, back and forth, just the two of us. We shared hundreds of conversations. We both loved American Idol and The Gilmore Girls. We listened to hours of 'Point of Grace', 'Shania Twain', and 'Avalon'.

Haley was obsessed with "Friends" and cookies and cream ice cream. She was waiting so impatiently for that 10th season of Friends to come out, but our bookshelf still holds only 9, she died before it was released.

The day Haley died was like any other; we woke up, had breakfast, and headed to the hospital for routine labs. Something we had done hundreds of times over the last 5 years.
But things went terribly wrong that day. Haley had a sinus infection.

Something you or I could fight off easily killed my incredible daughter in less than 10 hours. I watched, helpless, as she deteriorated by the minute, and then I did something no parent should ever have to do.

I watched my daughter take her last breaths, I kissed her goodbye, I told her to go to God, and I promised her we would continue her work for the kids she so loved.
Then we left the hospital, one less than when we came in.

Haley's death destroyed me. That she would die was unthinkable. For about 4 months, I rarely left my bed, and lost 30 pounds. I lost the will to even live. Finally, my promise to her, the loving care of my husband and surviving children, and the memory of her courage got me moving again. Although my heart will forever hold a huge missing part.

We have started '"The Haley Vincent Foundation", a non profit organization that helps children and their parents coping with chronic illness. We send "Miracle Mail" to these children and their parents. Our mail consists of a care package with small toiletries, a calling card, and a roll of quarters (vending and washing machines) for parents, and a few age appropriate, hospital friendly, toys for the kids. We hope to raise enough money to each year, in addition to miracle mail, to raise money for the ALF, and Children's Healthcare of Atlanta at Egleston.

Haley had autoimmune Hepatitis that destroyed her liver. She was on the waiting list for a transplant. Unfortunately, she ran out of time.

Haley also had active pediatric lupus that at times had flared in her lungs, heart, brain, kidneys, and skin.
In the 5 years since diagnosis, Haley endured more than 100 days as an inpatient. She had hundreds of blood draws, dozens of IV's, CT and MRI scans, x-rays, and ultrasounds.
She had 4 liver biopsies, 2 bone marrow biopsies, 3 skin biopsies, 3 emergent admissions to PICU, requiring being put on mechanical ventilation. She had fluid around her heart that required 6 weeks of continuing drainage (and 3 painful drain changes), she developed shingles that temporarily paralyzed her bladder, and required straight cathing her every 8 hours for weeks.

In January of 2005, she had a spontaneous epidural bleed, requiring emergency craniotomy. She was lucky to survive that one, but she never really fully recovered. Her lungs started to fail, and she became short of breath even walking from one room to another. But, she never complained. She was in the beginning stages of hepatopulmonary syndrome. Once diagnosed, it would have put her to the top of the transplant list, but she never made it that far.

I hope you will want to share Haley's story of courage. Of one little girl trying so hard to touch the lives of others who are suffering.

To read more, or see pictures of Haley, please visit her website:
http://www.caringbridge.org/ga/haley

Thank you for your time.

Cheryl Vincent, Haley's very proud mother

bandcvincent@aol.com

Tuesday, March 28, 2006 3:22 PM CST

From Nancy Guthrie’s ‘One Year Book of Hope’

“And know that God does not discount or dismiss your tears. They are precious to Him because you are precious to Him……He doesn’t ignore them or tell you if you had faith you wouldn’t cry. He wipes them away. And Revelation 21:4 tells us not only will He wipe away our tears, he will remove all of the sorrow that caused them. God’s plan for the future is to destroy forever the evil that has brought you so much pain and then to live forever with you in a place He has lovingly prepared where there will be no more tears.”

"Always On Gaurd"

Coincidentally, (or not) that was part of the devotion I read not long after I had gone on a fairly prolonged crying jag. Longer than usual. Long enough my eyes were burning and I had to hide my face when my kids got home. And what exactly set me off this time? I was shopping at Wal-Mart for Kendall birthday gifts.

I was thinking it was nice that Kendall would have hated the stuff Haley would have loved and vice versa. Kendall likes dinosaurs. Haley loved princesses. But then I saw it. A Double Whammy. ‘The Friends version of Scene It’ Haley LOVED Scene it, and she more than loved Friends…she was nearly obsessed with it. It was like a knife going through my heart. If Haley were alive, we would have bought that on the spot. We would have played it the minute we got home. We would have laughed and remembered our favorite ‘Friends’ moments. She used to love to do that. One day I will list her favorites. She was waiting with SUCH anticipation for that 10th season to make her collection complete. Now, it is forever 9 seasons on our bookshelf.

“The Sign”

The very first time we ever stepped into Egleston Hospital in Atlanta, Haley was 8 years old. I can remember every minute of it. Her hair was braided in pigtails, and she was wearing pink flowered overall shorts and a pink t-shirt. She was reading a Junie B Jones book. She told Dr Romero she hated math and she liked to sing.
As we signed in, there was a huge sign that said “center for GI Diagnostics and Transplantation” It was surreal. I looked at that sign, and said to Bruce “We don’t belong here. That doctor is going to tell us to go home and stop wasting his time. He is going to say that Haley can be managed fine in Kingsport. But he didn’t say that. He said, "I would like to see her every three months". As it turned out, we saw him much, much more often.

Soon that sign became a symbol of hope for us. Everything was “after Haley’s transplant…” Our lives were on hold waiting for that all consuming phone call. But, “after Haley’s transplant...” we were going to Hawaii, and visiting New York City, she was going back to school; she would feel well again….

Now, it feels like a symbol of betrayal. It taunts me. Other kids, who need livers, get livers. Why didn’t Haley? It haunts me. Where was Haley’s 2nd chance? Who failed her?
She needed a liver transplant…why didn’t she get one?

“Normalcy Lost”

It snowed today, it was lovely. I was supposed to be watching an episode of CSI Miami with Nick, but found my eyes drawn to the window, again and again. It was so beautiful. It seems so random and spinning in the air, but it lands evenly enough to perfectly cover our deck, our trampoline, and the tree branches. It really is fascinating, if you watch.
Haley loved the snow. She would have been right out there in it, breathing hard, getting cold, but most important to her, “Not letting life pass my by”. Life never passed Haley by. I wish her illness had. Sometimes I wonder what my life would be like right this minute, had we never been thrown into the world of illness and death. Would Haley have continued with gymnastics? Would she have tons of friends and sleepovers? Would she be talking on the phone to boys? Would she have been kissed?

“Come home”

Yesterday, I was putting away laundry, and tucked between Bruce’s clothes was the black dress Haley wore to the Tom Glaive event. We have the loveliest picture of her in it, sitting at a table, reading her most recent Lemony Snickett book. It was SO Haley. Unaffected. Loving her Lemony Snickett . I still have her last one bookmarked, the way she left it.

I saw that dress and I grabbed it and tried to smell her, but it had been washed. Her smell wasn’t there. But the dress was so soft, and I remembered how it gently hugged her shoulders. I sat on the floor of the closet and sobbed. Bruce called, Kendall answered the phone. I heard her say, “Mommy found sissy’s dress, she is crying in the closet.” Then Kendall walked in and said to me,” Daddy was going to the gym, but now he’s coming home.”

Bruce walked in and sat on the floor with me. I looked at him, and said, “I just want her to come home now. She needs to come home now and be with us. I miss her too much.”

I just want her to come home to me.

Thursday, March 23, 2006 12:49 AM CST
How do you know when God is talking to you? There is a well known verse in the Bible that says “Be still and Listen…”. Not many of us take the time out of the day to just listen. I know I don’t. I cannot stand the noise of silence. I am afraid of it. The TV is always on. The music in the car always on. Even in the bath, I will often take a CD player to listen to. So, how can God speak to someone like me who doesn’t listen very well? I know that He would prefer I shut it all off and talk to Him, and sometimes I do…..but only for moments. It makes me uncomfortable to be so silent. It is something I need to work on.
But in the meantime, God still talks to me. I guess it is easy for me to hear Him over the noise because I know Him so well. Even when I try to pretend it is not Him, I know when it is…and I eventually do what He wants. I used to do it because the persistent thought would leave when I did whatever I knew He wanted. Now I do it because Haley taught me about obedience. And I also do it because, in spite of my pain, I continue to have a grateful heart. I am grateful.

If you have heard this story before, please bear with me…God has been talking :) And He wants this said.

When Haley first became ill, she was 7 years old, just a baby, and a first grader who still had her baby teeth. She was beautiful and healthy until one day, she just wasn’t. She was desperately ill for the first time ever. She initially had some gallbladder involvement that was very painful. She was on IV Demerol and writhing in pain. She cried out to me “Mommy, why doesn’t Jesus just take my pain away. I have been praying and praying.” How helpless I felt. It brings tears to my eyes remembering that feeling of things beyond my control. In Haley’s world God could do anything. Why would He let her suffer?

I went out into the hallway of the hospital, and just sobbed. I could hear her in the room begging God to help her. I wanted to be mad at God, but I wasn’t. I prayed. I asked God for the words to explain something to my daughter that I didn’t even understand myself. How could I tell her why bad things happen to good people? How could a 7 year old grasp such adult issues? And then I prayed, and I told God, “I would rather she lose her life than lose her faith”.

And then, I composed myself and walked back into the room. I sat with her and stroked her. I told her that God didn’t promise us a pain free life. He only promises us that He can make good out of every bad thing. And that we can do anything, through Christ, who will strengthen us.
Eventually Haley recovered, and for the next five years that incident was always in the back of my mind. No matter what she went through, and she went through A LOT, she came out the other side, literally singing God’s praises. Just weeks after a life threatening brain bleed (and the loss of her hair) she wrote the song “Everywhere”.

“Everywhere you look, He’s standing right there,
Even when you think He just doesn’t care
Everywhere you look He’s standing right there
Even when you think He’s not being quite fair
He’s Everywhere”

There is, of course, more to it. That is just the chorus.

Even knowing Haley eventually died, I would change nothing about that day. I would do anything on this Earth to have my daughter back…even in pain…I would snatch her out of Heaven SO quick if I could! Anything EXCEPT trade her faith. I would not trade her life for her faith.
I would rather my daughter lived 11 faith filled, Christ centered years, than 80 years believing in nothing. There are worse things than dying.

As I said in my last journal entry…My faith is unshakable….and so was Haley’s.

Now, please don’t take any of that to mean I don’t miss my little girl. I miss her like crazy! She is never out of my mind. I still have not worn mascara, I cry so much. I will miss her all the way until I see her again. That is a promise.

Cheryl

Psalm 119:28-30
"I weep with grief; Encourage me by Your word. Keep me from lying to myself;Give me the privelege of knowing Your law.I have chosen to be Faithful;I have determined to live by Your laws.

Tuesday, March 21, 2006 6:41 PM CST
I have no idea what I am going to write today, I just know my "Sunday update" is two days past due. I feel like I am in school again, and have missed an assignment.

I had a bad dream last night, it sort of put me in a funk but I am trying to shake it off.

My friend, Lisa Aiden¡¦s mom
Came from Florida to visit this weekend. We had a really nice time. Our visit was, like everything else, tinged with sadness. But, I felt we were so productive in getting some groundwork laid for Haley's Foundation. And on the non productive side, I am happy to say that Lisa was able to view the "Deal Or No Deal" spectacle at our house. AND, not only did she watch it, she fully participated, even wanting to WRITE DOWN our guesses so noone could cheat. Relax Lisa, You don't see US getting all worked up over a game show. :)
.

Back to the foundation....We met with our web designer and the web site is beautiful. I think it will take several weeks to be up and running, but the rough draft looked amazing. Thanks to Bonnie for donating her time and talent for our cause. Check this page for more exciting news to come. This is going to be big and amazing!

Okay, I need to talk about some useless stuff that appears to be clogging up my brain. I would love to hear your comments...
Like....how about that cat falling out of the tree.....like 80 feet or so! My freakish family is obsessed with it, so I have seen that clip about 50 times. We have dissected it. We know how many times he swung his tail while falling. Oh, and how hard that poor thing hit¡Kmy husband and kids scream "WHAM" every time he hits the ground.

And when I watch these very important TV shows, my feet are freezing, and my legs are sweating. It is like my extremities belong to two different people. Bruce suggested menopause....so I beat the crap out of him! Just kidding, I actually put saran wrap over his toilet seat. Ssshhhh

Oh, what silliness.
I just don't feel like talking about grief this week. I am still very much feeling it, but I am weary of focusing on it right now. I need a break from my own brain.

I will tell you one thing I have learned...I have unshakable faith. I will write more about that next time.

Until then,
Cheryl

Friday, March 10, 2006 12:03 AM CST

I was organizing the bonus room this weekend, and I ran across a small tape recorder of Haley’s. I turned it on and there was her voice. She sang the National Anthem, then she and Kendall sang “On top of Spaghetti”, then there was a short conversation between the two girls. Haley mentioned it was the 4th of July. It was very bittersweet. Hearing her voice was beautiful and sad, but for me, listening to her labored breathing was just heartbreaking, and it brought back so many guilt feelings. I KNEW there was something bad going on. And even though we did tests, I should have pushed for more, I should have MADE them help her. I wish she had not been so tough, if she had complained I would have done more. But, she always insisted she was fine, even when she obviously wasn’t.

Hearing the National Anthem made me think about the day she sang it at Turner Field. She just nailed it, in front of thousands of people. And she stayed so very unaffected by it all. She never really cared about the celebrity status she had acquired. She just wanted to be a little girl.
The happiest I have ever seen Haley was when a girl friend was over, and they just got silly together. They would make up dance moves to Hillary Duff songs, they would paint each others nails, read the teen magazines, and they would catch worms, name them and then have worm races.
She did not want to be extraordinary….she wanted to be ordinary. Her dreams for her future were simple. She wanted to marry on the beach. She wanted to have kids. She wanted to teach kindergarten, and live on the coast of Maine. She just wanted to enjoy life.
But what is so very amazing to me, is that once it became clear to her that God’s plan was bigger than hers. That He was in charge, and she didn’t get a say in the way things were, she somehow found such insight and wisdom, and just courageously embraced her mission. She just instinctively knew what people needed, when they needed a laugh, or a hug. When she should cheer them up, or when she should tell them about Jesus. In God’s eyes, she must have been the very definition of obedience.

I used to think when people told me how strong I was, that it was really such a misconception. I wouldn’t CHOOSE this life, NO WAY, and neither would have Haley.
But I don’t think the strength comes from just enduring and living through it, but finding the positive in the pain. In allowing God to be glorified during a time we felt He had turned His back. The strength for Haley was in never letting the illness win. And she never did…she lived her life joyfully through the most difficult of circumstances. She worried more about other people than herself. She gave so much more than she took.

To love intensely is to grieve intensely.
I don’t think I realized, until I witnessed so much grief in our community and beyond, just how much Haley was loved. I had always thought it was MY loss, and of course it impacted me far differently….but I am learning to share this loss, to let others grieve her too.

There is no easy way to segue into this…sort of from the philosophical to the practical…but I have to ask you all to PLEASE stop pressuring me to do things I am not ready for. I know you are trying to help, and I love you for that, but trust me, it is NOT helpful. It just causes me more stress. You know who you are; I love you guys, but please stop. I will do what I can when I can.

Someone asked me to give a quick update on the other kids so here goes:

Kendall is thriving at home. She is back to being silly. She talks about Haley now without prompting, and I am very careful not to look sad when she does. I want to encourage her memories. I enrolled her online at The Grace Academy and she is doing 2nd grade reading, and 1st grade math. On Thursdays, Grandma Pat picks her up, and they go to the Library and then go do an art project. I am going to start teaching her piano as well. Her favorite subject is Spanish….Funny, since I can’t speak it. We are getting far enough along; I need to get her an audio tape for pronunciations. She is funny and sassy, just like her sister.

Logan continues to be a joy. He is thoughtful, sensitive, and spiritual. He will always seek me out to pray with him at night. He always prays for Haley, his family, and the children who are sick that Haley (and now we) cared so much about. He is doing well in school. He wants to take up the saxophone…so we will see.

Nick is doing better, behavior-wise. I can tell he is really trying. It just doesn’t come easy for him. He got a “C” in English, so he lost his Ipod, computer, and TV until next grading session. We expect all “A” and “B”’s. Now that may seem a little harsh, but let me point out, I have NEVER….NOT ONCE seen that boy crack a book. He never studies. He never seems to have homework. So, if he can get decent grades with “skating” by, think what he accomplished if he actually studied!! But, he has a huge heart, and he can be a real delight to be around.
So, I leave you now with this…
II Corinthians 4:8, 9 “We are troubled on every side, yet not distressed; we are perplexed, but not in despair; persecuted, but not forsaken; cast down, but not destroyed;” Isaiah 43:2 “When thou passest through the waters, I will be with thee: and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee.”
Always in His love,
Cheryl

To anyone who has suffered a loss: I happened upon a book that has been good for me. Aside from the book “Heaven”, this has been the first book to ever offer me any real comfort. It is called, “The One Year Book of Hope” by Nancy Guthrie. I encourage you to read it.
If financially it is unavailable to you, please send me a personal email. I will make sure, through Haley’s Foundation, you receive a free postage paid copy.
Cheryl

Friday, March 3, 2006 5:05 PM CST

This update is going to be a two parter. One of this world and one of the next.

So, this world…..

“Deal or No Deal”…what can I say? Besides my family is obsessed with this show. I have gone to bed with a headache every night this week, from the stress of a silly TV show. We all pick our “cases” and compete with each other to get the lowest amount, we actually scream “Deal! Deal” at the TV screen (we always want them to make the deal, none of us would be good gamblers). We even guess what color outfits the models will be wearing. And Bruce, well he always insists that he cannot choose a case until he has seen the model holding it, so he is always the last to pick. And it doesn’t bother me, I mean those models can’t compete with a 43 year old, depressed, woman with an unearthly shade of red hair who never bothers with make up, AND dresses in unsightly sweatpants and paint stained T-shirts. It almost makes me feel sorry for them.

How about that Paula Abdul? What was up with that? Has anybody seen the message boards at the American Idol web site? Outrageous. I know she has chronic pain, but so did Haley, and she never acted like that. Never. It looked to me like Paula was maybe mixing the painkillers with a little alcohol. Of course, I don’t KNOW that. But it looked pretty bad. In fact, she has been weird all season, the way she interrupts Simon and hangs on him, or slaps at him. She didn’t act like that in the first season. I hope she straightens herself out. And I hope she apologizes to those poor kids who were being eliminated. It was really insensitive. And out of character for her. Something is up.
And it made me a little sad, because Haley was such an Idol fan; we made the conscious decision to keep the tradition going to watch as a family. It wasn’t much of a family show last night.

All right, enough of that.
I have an exciting idea for the big project that Haley’s Foundation is going to fund this year. I am REALLY excited. I will tell you all about it next week; I want to speak with some of our board members first. But, I think this is what I have been waiting for. I think it is the perfect way to honor Haley’s life and purpose.

Now the really important stuff….the next world.

I want to talk about Heaven. No, I want to TELL you about Heaven. It is a real place. A place where there is work and play and houses and streams and mountains. There are gardens, and beaches, and people. Beautiful people who all love each other. There are animals in Heaven, but none of them scratch or bite. We live in peace and harmony. The lion and the lamb. There is food and it will be like nothing we have ever tasted before. There is no such thing as cancer, there is no need for hospitals, and we will never experience physical or emotional pain again.
And the very best part is we touch the face of God.
And the second very best part, we reunite with those who went before us. Can you imagine that? Can you imagine that joy?
It makes me cry just to think of it. To never be sad or tired again. To finally know all the answers.
To see my sweet girl again, and to know we can never again be separated, because there is no death in Heaven.
And if you are reading this, I want you to be there too.

I know, to some people, “born again” and “saved” are scary words, and immediately the one who says them becomes labeled as a “fanatic”. But, there is nothing more important in the world than our salvation. And those words really aren’t scary at all. Being saved means you are sure of your own personal salvation. And, “born again” means to reject your own sinful nature and become a new person in Christ. That is all we have to do to have eternal life in paradise. Acknowledge your sin, ask forgiveness, accept the gift of salvation, and begin your new life as a child of God.

If you are not familiar with this territory, and are not “saved”, I would plead with you to give it a chance. Know that it says in the Bible “My ways are not your ways”…that means our tiny 3 dimensional brains are not meant to always understand things. God wants us to have faith, even when it’s hard. Especially when it’s hard. You don’t have to figure out how old the Earth is, or evolution, or why bad things happen to good people. Because He tells us we are never going to understand….not here.

And Hell is a real place too. Again, it is not for us to understand how all of this works exactly. But, God commands us to accept Jesus and His gift of salvation. To know that we are only worthy of being in His presence because of the Cross.

I don’t often share my faith like this on this web site because I really am not comfortable evangelizing, and I worry about offending people. But, this week is different. It is different because God would not let me rest until I shared this. He bugged me and bugged me. He said “Don’t you want to see them in Heaven?” And I had to answer “YES”, I do want to see every single person I know, and lots I don’t know yet. In Heaven. On God’s celestial shore….where my daughter is waiting…..

Cheryl

Sunday, February 26, 2006 2:22 PM CST

Random Thoughts

Usually when I write these entries, there is some point I want to make. Or not. Maybe the point is just survival. But this week, for some reason, I have been plagued with these seemingly random thoughts…at least they seem random to me. Not connected. Many not meaningful…..some the most meaningful things in my life. So, I am just going to put them here, and see what happens.

Random Thought #1
Journaling here is a bit strange. I give virtual strangers open access to my most raw and intimate feelings. Some things I would never even speak aloud, I write here. Isn’t it a little like being naked in public? But I never question the WHY of it. I know why. It helps me to put it in print, almost if I write it down, I can stop thinking about it for a little while. I also do it to help the other parents. It helped me immeasurably to read how others fought through and survived some of the cruelest blows life had to give.

Random Thought #2
Why are so many people in America so obsessed with celebrities? Who really cares about Brad Pitt and Angelina Jolie? How do they even get so famous..is it just a media driven hype-machine that perpetuates itself. And I don’t have a thing against “Brangelina”. I think they really have dome some good things with their wealth and fame. But why is a picture of her pregnant woth a million dollars? Think of all the good that could be done for a million dollars, but some stupid magazine would rather buy a picture (of a couple being ambushed) than do any real good with it. I like entertainment as much as the next person, but it is about the TV show/movie, not the person starring in it. We don’t know these people, and I for one, could not care less about what they are wearing or where they are going. It just seems so silly.

Random Thought #3
What did we ever do without computers? I think we all lost touch with each other more, and we “know” so many people we haven’t even met. Kind of a strange little world. See Random Thought #1.

Random Thought #4
Avoidance and Isolation.
I don’t like thinking. I don’t like leaving my house. I don’t like seeing but a very few people. I don’t like eating out or going to the movies. I like sleeping. And “Skating with the stars”. Which sort of contradicts Random Thought #2. Although maybe not, because I KNOW that Skater Lloyd whats-his-name left his pregnant wife for his celebrity, Kristy Swanson. (Did I miss her somewhere..Is she famous?). I could have lived without knowing he was a horny little jerk…but you cannot help but know these things!!!
Random Thought #5
I miss my little girl. This is not a random thought, but a constant thought. I fight back tears every day as she occupies my thoughts. And you may think, why fight back the tears? Well, it upsets my children to see me so upset. I try to spare them, and since they love me and follow me around like sweet little puppies, I have little time to let go emotionally. Even as I type this, trying not to cry, Logan and Kendall are right beside me watching Pink Panther”. I am in my bedroom, I came here to write this, in case I cried. But they found me, so I only let a few, easily hidden, tears fall. You see, to me, it has been only 4 ½ months, BUT in a 6 year olds life, that is such a long time.

Random Thought #6
Personal Appearance
Boy,nothing could matter to me less these days, as anyone who has seen me can attest to. It doesn’t make sense, but it almost seems like an insult to Haley for me to worry about such unimportant things. Since Haley died, I have not worn makeup, worn perfume, painted my nails, or put on earrings. I am rarely out of sweatpants and Bruce’s old Tshirts. This weekend, I dyed my hair red. Just for something to do. It looks terrible, but I don’t care. Nobody sees me anyway.But, it isn’t something I would have done 6 months ago.

Random Thought #7
I hate summer. I am especially dreading this summer. I like winter. Under lots of covers when it is cold and dark outside.
Haley used to love to swim. We teased her about being part fish. But not last summer. I can still see her in the pool, sitting on the stairs, because she is too winded from any exertion. She sat and watched the other kids with longing in her eyes. And I sat and watched her with my heart breaking for her.

Random Thought #8
Okay, this one may offend some people, so I apologize in advance. And remember, I am a grieving mother, cut me some slack.
On guestbook entries….I am a CB traveler myself and I sign in on others guestbooks a very small fraction of the times I am at the various sites. And I know my “signers” are a fraction of the people actually reading. Now for my thought…I have noticed that some people get almost aggressive about people signing their books. Almost like they are competing or something. Now, don’t get me wrong, I love my guestbook entries, I read every one of them, but what makes them special to me is that people don’t feel compelled to write. When they choose to, it is from the heart and therefore, meaningful. I have been to some sites where I have felt guilty for not signing in. It is obviously much more time consuming to write, than to just read and move on to the next child you are (in my case) actively praying for. I DO sign guestbooks, when I feel “led”to.
You know, even as I write this, I feel bad. Maybe those people don’t have the same wonderful friends and support I have. Maybe they need this internet support more than I do. So, forget everything I just wrote. If they ask you to, and you can, sign their guestbooks. It may really make a difference for somebody. Okay, that was a little schizophrenic, but I told you they were random thoughts.

Random Thought #9
Some time ago, I promised to include something positive in each entry.
This is an excerpt from a book authored by a man in our church. He was nice enough to give me a copy of his book.

“Death is a natural consequence of sin, but from God’s perspective, it is not a condemnation, it is a gift.”

Nothing makes it all right for Haley to be gone. But I choose Hope. And I choose Faith. And I am so grateful that I chose Jesus long, long ago. It doesn’t make my path an easy one, but I can survive because of Hope.

God bless you all,
Cheryl

Monday, February 20, 2006 12:53 AM CST

It’s Monday, I am a day late for anyone keeping track. It’s funny, I never look at the counter, so I don’t really know if many people still stop by here or not.

I went grocery shopping on Sunday. That was a big deal for me. Of course, I had an ulterior motive. Instead of not eating, I am now only eating things covered in chocolate. Basically, I am medicating myself with food. Something about chocolate raising serotonin levels. So, my cart was filled with chocolate bars and ding dongs. I did manage to get some fruit in there…..for the kids. I realized as I got in my car, it was the first time I had left my house in 10 days.

Last night we were watching TV and that “Depression hurts” commercial came on. You know thee one where they say “Who does depression hurt?” and they show all these sad kids and husbands, and then they say “Everyone”. Well, Bruce looks over at me and says, “That commercial is for you”. ARE YOU KIDDING ME!!!! So, I say to him, ready to rip him a new one, “I am on two anti-depressants, I am in counseling, I have an appt with an actual psychiatrist, I have lost 25 pounds, I can’t sleep without sleeping pills, and I cry so much my eyes burn continually!!!! You think I don’t KNOW I am depressed? You think I need a stupid TV commercial to tell me I am depressed!!!” I am pretty sure the word “moron” was tossed around as well. Bruce smiled at me apologetically and didn’t have too much more to say.

Didn’t go to church on Sunday again, this time I felt really guilty about it. I was awake in plenty of time to make either service. I wasn’t off the edge emotionally…I could have gone. I think I am trying to protect myself by avoiding what is sure to bring feelings out. I am just so tired of crying and being so sad. It is exhausting. I just want to hide from anything that might make me emotional.

I haven’t been able to get to the ladies Bible study either. I try every week, but I just am afraid of being around other people. I feel like it is still too soon. But, I am trying to do the actual book study part by myself. It is a good book, but it makes me cry.

The other kids are well. It has snowed the last two weekends, and they have a hill close by to snowboard on. They have even met some of our neighborhood kids.

We had a water pipe freeze and burst in our garage. It could have been a disaster, but the kids were outside and saw it happen, and called for us…Bruce ran to turn off the water main..and we STILL had an inch of water in the garage. So, now I am waiting for the plumber, and we have no water.

Before I leave, I have to share this wonderful new show I have found. It is called the “Kirk Cameron” show, and is on Trinity Broadcasting Network (TBN). It is so awesome, always addressing those questions we all have. The show on Evolution was incredible. So, check it out, it is on Mondays at 7:00PM on TBN.

Love and Hugs,
Cheryl

Sunday, February 12, 2006 11:02 AM CST

I always wonder, during the week, what I will write here. Although my days and movements are routine, monotonous, and predictable, my thoughts and emotions are not. And so what I would write on Tuesday may be quite different than what I write on a Sunday. It truly is only a snapshot into my life, our lives.

Sometimes I feel a bit self centered to write so much about ME!! After all, this started as Haley’s journal. But it has become a healing therapy tool for me. I am told to heal from grief; you must face it head on, embrace the pain, and live through it, no matter how much it hurts.

I am probably doing it all wrong. I don’t actually embrace the pain, it is more like it is always there, but sometimes attacks me brutally and other times just simmers . It would be like having surgery without anesthesia. Sometimes the pain is like the actual surgery, sometimes it is like they have stopped cutting. Then out of the blue, they start cutting again.
I have done lots of things the books say not to do. I have mastered isolation and avoidance. I have relied on prescription drugs to dull the pain. When I eat, I eat crap. I never exercise. Someone (in the medical profession) told me I was committing “passive” suicide. I really don’t want to die. I don’t want to put my husband and children through more loss and pain. It is just that I don’t want to live either. And it is difficult to reconcile the two. I think that is why I am merely existing.

I can’t really figure out what I am supposed to do. I can’t seem to find the point of anything. I watch my friends have “normal” lives, taking their kids places, cleaning house, cooking dinner, going to church…and I think Why? Why does anyone care if their car is cleaned out, or the leaves raked? What does it matter what you eat? Food is functional. Who cares if I wear pajamas all day? I cannot find the motivation.

My family doctor said I was having a major depressive episode (as opposed to a minor one, I guess) and referred me to a psychiatrist. Please do not tell Tom Cruise.
He said I have actual physical symptoms of major depression, like hyper reflexes, and shaking all the time. He also told me I had fibro myalgia. I cried the whole time I was there. I told him I don’t care, just write down what you want me to do, because I won’t remember, and I will do it. II HAD gained back 5 pounds. I am pretty sure it is from the move. I had to be physically active while we were actually moving, but as soon as we were settled, back my booty went to the couch or the bed.
I was already on 2 antidepressants, and seeing a counselor, but apparently a psychiatrist can prescribe stronger antidepressants. My depression is now out of the boundaries of what a Family Practice doctor can do.
A lot of people think this something you can just snap out of, but believe me; no one would choose to be this miserable.

I am supposed to make a list of 3 things (small things) to accomplish each day. If I can do 2 of them, that is supposed to be a good day. My list is things like “eat breakfast” or “take a shower”, “wash the dishes” or “make dinner”. Things most of you do without even thinking. Things my broken brain and heart can’t handle.

Bruce had a really bad day yesterday. He has to save his grief for the weekends. I haven’t decided whether his having to work to support us is a blessing or a curse. Probably a blessing, in the long run, as he is forced to be around other people. I don’t know how he does it. I couldn’t. I have absolutely no control over my emotions at all. It breaks my heart to see him sad. He loved Haley so much. And she loved her daddy. There is nothing I can do to help him, and there is nothing he can do to help me. I can see why 70% of marriages end in a family where a child has died.

Ok, enough depression for the moment.

My secret…….

First the guesses were so great, I really enjoyed reading them.
The dance lessons were a good guess, although after reading the above, you probably realize we are not quite ready for that! But maybe one day….

Kristy – I am flattered that you thing I could run a marathon! A marathon for me is a trip to the mailbox and back!

Lisa – I never should have let you play. You know me too well!

So, yes I am getting a tattoo. I am still playing with ideas. I think I am going to get it on my upper back, with “Haley” written in pink, and underneath it in smaller letters “fly free sweet girl”. But, I may add a picture. I am not sure when I will actually get to the tattoo shop, but hopefully soon.
I think Haley would think it was a very cool thing for me to have her name on me permanently.

About the other kids..
Kendall is thriving at home. I have not seen her so happy in a long time. The first Monday she realized she would be home schooled, she was practically giddy. You could tell a big weight had been lifted off of her. She was so stressed. And let me say, this is NO reflection on her school or her teacher. We adore her teacher. She has taught all of our kids, including Haley (kindergarten), and she has been as compassionate and loving as we could have hoped for. It was just Kendall. She needed her mom.

Logan is his usual easy going sweet self. Moving out to the “country” has forced all the kids to play together more, I think it has been such a good move for them. Logan asked why dad was still sad….He said “I am not sad, because my heart is filled with Hope, and I know Haley is happy and safe.” I think he has the spiritual gift of faith. I also think he is going to pastor a church someday.

Nick is always a challenge. Keeps us on our toes. He loves his new ipod..anything with technology is his thing. Our biggest complaint right now is us trying to get him to do a good job with his chores; He does the most minimal and sloppiest job. I told him, he will get fired if he tries that in the real world!! But, he is a great kid, fun to just hang out with, he loves for it to be just me and him, hanging out, watching TV.

Well, there is your snapshot into my life for today. Opinions and suggestions on the tattoo, both good and bad, are welcomed.

Thanks for sticking by me.
Love to you all,
Cheryl

Sunday, February 5, 2006 8:44 PM CST

Well, I didn’t want Sunday to get away from me without updating; I know some of you think it is a Sunday thing. Although I just do it when the mood strikes, it does usually seem to be a Sunday.
I was shocked at how many birthday greetings I got, I didn’t think anyone knew. I probably would have let it go completely unnoticed, but my kids wanted to get me a present and two different friends wanted to bring me a cake! So we did have a tiny little celebration. The kids bought me an ipod; I just have to figure out how to actually use it now. A huge thank you to Mindy for my memory bracelet. Since I opened it, I have only taking it off to bathe. Also, thanks Sherry for the sweater; you are maybe the kindest person I know.

I did a lot of thinking today. That happens a lot on the weekends, nothing good on TV maybe, too little distractions. When Bruce is home, our TV only has two channels – ESPN, and CNN. I don’t know why we pay for…like…400 or so.
Anyway, I thought a lot about Haley, and the whole grief process. It is so much longer and so relentless, I feel like I am being battered on. It is physically exhausting to have to be thinking about her every second, which is what I do if I cannot hide in a TV show.
I also thought about church today. We didn’t go. I haven’t been in 4 weeks, and the one time I did go, I mostly stayed in the car. Seems strange for someone who at one time was at church every time the doors were open. In fact, before Haley became ill I even had a key to our old church I was there so much. Seems like I would need it now more than ever. But what I have discovered is, I have to psyche myself up emotionally to go…and I leave completely exhausted and drained. It takes so much energy to see people, and hear the music…I just can’t do it. But I have to figure out a way, because the kids NEED to be in church regularly.

I have been doing the book work for the ladies bible study, but I haven’t made it to a meeting. Just the book makes me sob and sob. I don’t want to completely lose control in a group setting, nor do I want to make others uncomfortable. I guess I am just not as ready as I thought I would be.

So where am I in this process? Still at the beginning I would say. 4 months have passed and I still desperately want this to be a bad dream. I miss her so very much, everyday, every minute. I am very unpredictable in my emotions, even to myself. You may call and I sound fine for a 30 minute chat. Or you can stop by with lunch, and I will sob for 3 hours (Sorry Christy). And I have no idea which it will be. I don’t trust myself out in public much. Of course, I don’t much WANT to be out in public either.

As most of you know, Kendall is having a very difficult time adjusting. After much thought and discussion, we have decided to take her out of school, and home school her for the rest of 1st grade. We will reevaluate over the summer about 2nd grade. If you have a supportive comment to make, feel free. If not, we really would choose not to have any unsolicited advice on this controversial manner. As always, we are doing what we believe to be in the best interests of our child.

Okay, even though I have been extra sad and in a funk this week, I promised to find a positive for each journal entries. This week you get a twofer..lucky you!!

Last week when Kendall was sick, she slept in bed with me. I woke a few times during the night with Cara (our corgi) snuggled into my back and Kendall spooned into my front. I even stroked her pretty black hair a few times. Imagine my surprise, as daylight came into my bedrron and I realized I had been spooning with our 60lb border collie!! Who, by the way, is NOT allowed on the bed. How she managed to sneak up and then have me snuggle her all night is beyond me. Kendall was all the way on the other side of the bed.

Okay, the second one is a guess really. A guess for you guys. I am going to do something next week that I never would have done had Haley not died. Completely out of character for me. But it should be a lot of fun, at least as much fun as I am capable of having. I would love to hear your guesses. And it is a surprise. No one, except Jennifer, knows. Not even Bruce. So guess away!!!

I am leaving you with a few prayer requests for my “liver kids
Annika In PICU , has had 2 liver transplants and continues to have complications
Natalie In hospital with post transplant complications.

I don’t have permission to put this out there from the third family, so I won’t name her. But she died in January, almost 5 years post transplant. She died very similarly to the way Haley died, so it really touched me. I am heartbroken for the family. She was only 7. Life can be so cruel.

So please pray for these families, and for us, we always need it!!
Love and Hugs,
Cheryl

Saturday, January 28, 2006 1:44 PM CST
Have you ever noticed how uncomfortable people get when you talk about Satan? You can talk about God, and that is almost always accepted without judgment. But, when you bring Satan into it, people start looking around for the nearest escape exit. Why is that? Is it really so much easier to believe in good than evil? It is certainly more comfortable to talk about our Creator, who loves us and holds us in His arms, than the evildoer who wants us to live in pain and misery.

But I assure you that Satan is real, and he is sneaky and deceitful. He worms his way into our lives when we are at our most vulnerable, and plants seeds of guilt, anger, and fear. He encourages us to handle this pain with self destructive thoughts and behavior.

Satan was at my house on Sunday.

Just moments before we were to go to a scheduled lunch, Kendall (our 6 year old) became ill. This was going to be my day. The day I went grocery shopping. The day I had lunch at someone’s house. The day I turned around that bad anniversary date into a new beginning. But Kendall, our tough little one who never gets sick, starts complaining of a headache and sore throat. Her skin was hot and feverish. (I threw our thermometer away the night Haley died).
So, I called my mom who came over to get my grocery list, and I took care of Kendall. It actually was nice. Not that she was sick, of course, but really taking care of one of my children. Making her soup, coaxing Motrin down her throat, getting a new thermometer and monitoring her fever, giving her a bath, watching her favorite movie (Madagascar).

And as it will be always, Haley was in my thoughts constantly. I cried off and on that day, but with a new sense of resolve. I will learn to live with this loss. I hate it. I want to change it. But I can’t. So, I will learn to coexist with my pain. So…YOU LOSE Satan!!!! You have already hit me with your best shot, and I have not and I will not turn my eyes away from the prize. My gift of eternal life with Jesus. And in keeping with my new attitude, I will find one thing positive to say every time I journal.

As our week progressed, Kendall was still quite ill. Monday night she spent leaning over the side of my bed, vomiting into a trash can. It was freaky déjà vu stuff for me. But she slowly got better. Amazing what a working immune system can do. She did miss the entire week of school.

I spent a lot of time thinking about what I want to do with the rest of my life. I know that I am in an enviable position (if you can take losing Haley out of the equation, which of course, is impossible). But anyway, I could get a job if I wanted, although I will NEVER be a nurse again…I have been trough too much to go down that road, I could go back to school, full time even if I wanted, I could take up a hobby or a craft, I could redecorate my house. And I learned something about myself. In my heart of hearts, I want to be a dancer. It may have something to do with that new show “Dancing with celebrities”, but I watch that show, and I think it looks like so much fun. So if anyone hears of an opening for a completely inexperienced 42 year old dancer who, incidentally, cannot dance, let me know!

This weekend, Bruce, our boys, and many of our amazing friends are at our old house painting, spackling, raking, weeding, pressure washing, and just generally getting it ready to sell. If you helped out today, thank you. You are truly showing us God’s love in a very tangible way. We could not have done this without you. Thank you so much.

Things are moving forward with the Foundation, but this has gotten long, so I will leave it for next time.

Trading my sorrow……
Cheryl

Sunday, January 22, 2006 9:37 AM CST

I always think it is funny when people tell me how “strong” I am. They have no idea. I am so weak. I am a pansy. I hate pain. I avoid unpleasantness in any form. In fact, I am a master at avoidance. I hide. And now that pain is all around me, I just crawl closer inside myself, and try to hide even more. As someone pointed out, I merely exist. It is true.
But this didn’t start with Haley’s death. I opted out the day she first became ill. The day I first realized that MY child could die. It didn’t matter how good a mom I was, or how hard I prayed. Something beyond my control could take her away from me …forever.
Coincidentally, that day was today, Jan 22, 2001.
And for the last 5 years, I have been going through the motions of life. Living in denial, desperation, and fear every day. I also experienced joy every day because I knew what a gift one more day with Haley was. Now I live with pain, anger, guilt, and depression. No more fear though, the worst has happened.
I was reading a book authored by a lady who had lost her child. She said living happy was a choice. You got better or you got bitter. It makes sense until you actually try to force yourself to be happy. It is harder than it sounds. Especially for a weak woman who would rather find a way to avoid life.
But, I have been thinking about it a lot. Maybe I should try. Haley would want me to try. She always felt so guilty that she took me away from the kids, or that our lives revolved around her medical crises. One of the last things she said on the day she died was she was sorry. God bless that little angel. SHE was sorry. Sorry because they couldn’t get her central line in and she was struggling to breathe, and begging to be sat up, so she could breathe. Sweet strong little girl. I would be blessed to have a fraction of her strength.

So maybe today should be the day. The same day that devastated us could be our new beginning. It seems fitting, although I have many doubts I can rejoin the land of the living. I guess I should do it in baby steps. Small goals. Today, I will grocery shop.

We are meeting later today with a family who lost their son in 2001 to Neuroblastoma. They know people from our church, and have asked to meet with us. I am a little apprehensive, as I know it will be emotional, but I am looking forward to meeting them, and hearing about Jake.

I continue to ask God for strength, please join me in that prayer.

Proud to be Haley’s mom forever,
Cheryl

Sunday, January 15, 2006 4:37 PM CST
Tuesday, Jan 17th
Update to my update :)
Turn up your speakers. Thanks to Julianna's dad, I have my new music up. Thanks Terry..these seemingly small acts of kindness make such a difference in my life. Just helping me do somethinf I can't do alone...well, just thanks.

Also, I didn't give some of you "closure" to my back story. I had to go to the doctor (that is a story in itself..anything medical sets off some post-traumatic stress), but anyway, he gave me cortisone injections and percocet...both of which are straight from Heaven! So, I am much better, thanks to all who asked. Now, read on for the real update.
Cheryl

I have had a few horrible days lately. I guess even the context of "good" and "bad" day's changes when you lose a child.

A "good" day for me would be a day when I am not actively looking for an oven to stick my head in. A "good" day still involves sadness and tears; it just also probably includes a bath and possibly a little housework. A "great" day would be one where I voluntarily bathe and leave the house on an errand. That has happened two times in 31/2 months, and those "great" days rapidly descended into "bad" days.

So, back to my crappy week. The worst day was Friday (the 13th, for you superstitious types (Being a Christian, we don't believe in such stuff...although my last really bad day was Dec 13th, the night of Nick's band concert, which is weird enough I am going to be very careful what I am doing Feb. 13th). Anyway...I woke up sad after a dream. My dream took place in Disneyworld, and I was marrying a handsome prince (Permission to chuckle is granted...even I can see the ridiculousness of it...but come on...we have NO control over our dreams.) and all my 4 kids were there enjoying themselves...Haley looking just as I remembered her. It made me wake up just MISSING her so much. I had tears before I was even fully awake.

Then, I had NO CHOICE but to get up because Kendall had a therapy appt at 10am (She is seeing a play therapist once a week to deal with Haley's death), and just everything set me off. The music on the radio, the doctor's office, the chik fil a I took her to after. My mom met me and dropped her at school. (The elementary school is still too painful, I avoid it if possible). The only thing I needed to do before going home was picking up a prescription. I couldn't find the drugstore, and got disoriented and lost on my way home. I was sobbing so hard I could hardly breathe. Just pain, pain so bad it knocks the wind out of you, just missing everything about my baby, and still not believing I will NEVER see her again. Some days I just can't wrap my mind around it, it is too horrible.

One of the things getting me lately is all these questions that run around in my head. Mostly, what were we doing these last five years that we couldn't help her? I mean, what did we really DO? I feel like every adult that she trusted to keep her safe, failed her. I feel like I failed her. Why weren't her doctors more aggressive? Why weren't we more pro active? Why was she so darn tough, she pretended she was always fine....until it was bad enough she was scared? Why her? Why not someone on death row? Why not an 80 year old? Why somebody who could have done so much good? Why does it hurt so much? Will it always hurt this much? Am I doing it wrong? Is my faith lacking? Is God mad at me? Is He abandoning me? Or am I abandoning Him?

Do you see what I mean? I am driving myself crazy. I find lasting comfort nowhere. If you are one of my friends who calls and doesn't hear back, it is not personal. It is just me, isolating myself. I can only talk, when I can talk. I can only be around people when I can be around people. I know it is crazy, but I am literally hanging on by a thread, and I have to do what I have to do.
Last night, we went to church; I sat in the car during the music, and slipped out during the offering. I heard the sermon, but I couldn't face hearing singing or talking to anyone. I know it is insane sounding. To my friends, I hope you'll stick it out; it is going to take a very long time for me to be anywhere near normal again.

Okay. On to some other things. The song on here has become depressing. I want to change it to the new Jars of Clay arrangement of "I'll Fly Away". I have always loved that song, and their arrangement is awesome. So if Julianna's dad is reading this, I may be emailing you that song with a favor to ask :). In the meantime, if anyone else wants to volunteer, feel free!!

About Haley"s foundation, it is still going to happen. Our major kickoff plan is to have "The Haley Vincent Memorial playground" become a reality at Children's in Atlanta. However, we have to get official permission from the hospital, and get our 5013c in place. We have decided to form the foundation independent of our church, so that will take more time and more work, but it WILL happen. And once it all does, I expect huge things. Nationwide things. Haley never did anything small. This is the girl who sang the National Anthem at Turner Field! How could her foundation NOT be huge!

Thank you all for the emails and guestbook entries. And I have said before, it is often the best way for me to keep connected, and it a wonderful source of support. I check on all of my CB friends often as well. I love you all.

Still struggling,
Cheryl

Tuesday, January 10, 2006 9:19 AM CST
A day without back pain is like a day….that doesn’t exist. At least around this house! I did finally see the doctor last week, and he injected cortisone and a local anesthetic into my back. AHHH sweet relief! Too bad it only lasted 30 minutes or so.
I guess it is going to take some time and (cover your eyes if you are sqeamish) exercise. Blech!! I weighed 112 lbs, dowm from 137 last time I was seen, so he said I needed to eat and exercise….as opposed to lying on the couch, popping Xanax, and wishing I was dead.
So, I am actually making a concerted effort (for the kids, mostly), to get back into life (slowly, of course). I have joined a twice a month Bible study at church, and a “small group (similar to a Sunday school class) that Bruce and I will attend every other Thursday night. We will also be attending our first Compassionate Friends meeting in Bristol, the first Sunday in February. So, I am trying.

As New Year’s came and went, it made me sad to be beginning a whole year that Haley won’t be here for. It made me think of all we have already been through, while she has been in Heaven. Her birthday, Halloween, Thanksgiving, our anniversary, school concerts, Christmas, New Years, and soon, my birthday. Every one of those days has felt “wrong” without Haley here.

I have been doing better, although I think I may just have gotten beter at pushing the thoughts away, and distracting myself.

Kendall is the one I am worried about right now. She is grieving quite intensly, and we have her seeing a therapist once a week. To be only 6, and to lose a sister you were so close to has been devastating.

We are getting settled into our house, and I love it. It was a good decision. There are still many boxes to unpack, but it is livable. We even have a few pictures on the walls.

Still working on Haley’s foundation…it WILL happen I promise. Just looks like more on God’s schedule than on mine.

Thanks for checking in. We love you all. Keep your eyes on the eternal life, this one is just temporary.
Cheryl

Thursday, December 29, 2005 9:39 AM CST
UPDATE to my update

I posted my update 30 mins ago, before I logged onto the guestbook. I had not visited the guestbook since before Christmas. I usually check every day, but was trying to avoid all things emotional around Christmas, so as to lessen the chance of the holiday meltdown. Not for me so much, but for the other kids, I wanted to at least try to act pretty normal.

So, after reading those posts, I had to come back (after drying my many tears) and say Thank you. I don’t say it enough. To hear how my daughter has changed you, to hear that you loved her, or were touched in any way by her…it matters to me. It matters a lot. It makes her loss more bearable somehow. Those few minutes you take to write matter.
I don’t want to name names, as I will inevitably leave people out who have been so important, but I need to say especially thanks to those CB moms and CLASS moms whose kids are doing well…it must be hard to continue to support me, but you do it…..Kendrie, Julianna, Aiden, Tanner, Marissa, Spencer, Sara, Sarah..you all have terrific, caring moms and dads, and you will be amazing adults because of it. Hug each other. Love each other. You are precious to my family, and in His sight.

To the people who sign once because something compels you to. I love that you do that. Your words matter. They help. Thank you. God bless you for reaching out.

(real update)
Christmas went well. Better than I had expected, especially after the disaster of Thanksgiving. We kept it all very low key, and I am sure I am the only mom in North America who managed to NOT step foot in a store between Thanksgiving and Christmas. Thank goodness for online shopping. We hung all the stockings, and on Christmas morning we filled Haley’s with flowers. I tried to imagine Christmas in Heaven, but I really couldn’t.

The day after Christmas, I hurt my back…doing pretty much nothing. I guess that is the price for losing 25 lbs, and staying in bed for two months. Very weak muscles. It is still bad enough today, that I have to go see a doctor this afternoon. He thinks I may need prednisone. How ironic. After doling out hundreds of prednisone tablets, I am now, for the first time, on the receiving end.

We had some wonderful news on Christmas. A good friend of ours, who loved Haley very much, is pregnant with a baby girl who will be named Jordan Haley. We were so thrilled and honored, and can’t wait for her to arrive so we can begin spoiling her! Haley would be so happy. I hope she knows…and if she doesn’t, it will be the first thing I tell her when I get there!

I continue to think about Haley endlessly. I try to stay positive in my thoughts, and not give into reliving the bad stuff over and over. Sometimes it is so hard. And sometimes the good thoughts hurt just as much or more. There is not really a bright side here!
We still have no word on Haley’s foundation. Now that the Holiday season is winding down, I am going to really try to get things rolling. I will let everyone know as soon as I do.

On a much lighter note, was anyone else obsessed with NBC’s “Deal or No Deal”? We didn’t miss as episode, played along…were as dorky about it as it gets! I hope it comes back, we loved it!

Hugs,
Cheryl

Friday, December 16, 2005 3:37 PM CST

We are mostly moved into our new house. If you need our new address or phone number, send me an email. Besides a big problem with getting phone service, it went relatively smoothly. We will have “real” internet service on Tuesday.

Life has been pretty rough lately. It seems like this is such a horrible world we live in, a world where evil runs rampant, crazy people kill innocents in the name of “God”, beauty, youth and wealth are idolized, all the values this country were founded on are just trampled and thrown away, a place where it’s okay to take the “Christ” out of Christmas, where pedophiles live to be old men, and sweet children suffer and die from disease. I hate this world. I hate living in it. I long for the next life.

I am a living contradiction. I am lonely, but don’t want to see anyone. I am bored, but can’t seem to move. I am tired, but can’t sleep.

My faith feels so tested right now. I need someone to say to me.. “Heaven is real, Haley is safe, you WILL see her again. You will hold her again….”
After her brain surgery, while in PICU, Haley was devastated about what had happened. She just felt like she had to endure one thing after another, and she said to me “God must hate me.” I, of course reassured her that God loved her. But now, for the first time, I believe I know how she felt, I think sometimes God hates me too.

I just miss her so much, more every day it seems. I can’t believe how long it has been since I have talked to her, or saw her sweet smile, or felt her weight as she crawled up on my lap. It is the every day little things I miss so much.

And of course, there is Christmas…a holiday I used to love so much, and I just want it over already! And I am trying to keep up some normalcy for the other kids, but they know how sad I am.

I am going to leave you with something useful I read recently.

Bereaved Parents Wish List (author unknown)

1. I wish you would not be afraid to speak my child's name. They lived and were important and I need to hear their name.

2. If I cry or get emotional if we talk about my child, I wish you knew that it isn"t because you have hurt me; the fact they have died has caused my tears. You have allowed me to cry and I thank you. Crying and emotional outbursts are healing.

3. I wish you wouldn't let my loved one die again by removing from your home her pictures, artwork, or other remembrances.

4. 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 over, or that if I have a bad day I need psychiatric counseling.

5. I wish you knew that the death of a child is different from other losses and must be viewed separately. It is the ultimate tragedy and I with you wouldn't compare it to your loss of a parent, spouse, or a pet. This one is just the worst in my eyes.

6. Being a bereaved person is not contagious, so I wish you wouldn't stay away from me.

7. I wish you knew all the crazy grief reactions that I am having are in fact very normal. Depression, anger, frustration and hopelessness and the questioning of values and beliefs are to be expected following a death.

8. I wish you wouldn't expect my grief to be over in six months. The first few years are going to be exceedingly traumatic for us. As with alcoholics, I will never be cured or a formerly bereaved but forever be recovering from my bereavement.

9. I wish you understood the physical reaction to grief. I may gain weight or lose weight, sleep all the time or not at all, develop a lot of illness and be accident prone, all of which are related to my grief.

10. Our child's birthday, the anniversary of her death, and the holiday are terrible times for us. I wish you would tell us that you are thinking about them on these days and if we get quiet and withdrawn, just know that we are thinking about them and don't try to coerce us into being cheerful.

11. I wish you wouldn't offer to take me out for a drink, or to a party; this is just a temporary crutch and the only way I can get through this grief is to experience it. I have to hurt before I can heal.

12. I wish you understood that grief changes people. I am not the same person I was before my child died and I will never be that person again. If you keep waiting for me to be back to my old self you will stay frustrated. I am a new creature with new thoughts, dreams, aspirations, and values. Please try to get to know the new me; maybe you will still like me.

13. Please don't tell us she is in a better place. As her mommy and daddy there is no better place then in our arms. We know you mean well but......

Sunday, December 11, 2005 3:39 PM CST
Hello everyone, This is Lisa or Aiden's mom. Cheryl called this morning to please spread the word about something wonderful happening tonight. (due to the move they do not have access to the internet yet) Tonight at 7:00pm all around the WORLD people will be lighting a candle in honor for loved ones lost.

"The ninth annual Worldwide Candle Lighting, held the second Sunday in December around the globe, is an opportunity for bereaved families everywhere to remember and celebrate the lives of children who have gone too soon. Families are invited to attend any of the hundreds of formal services throughout the United States and the world or to light a candle in the privacy of their home. You may also visit www.compassionatefriends.org to read more about this precious event."

So please join The Vincents, as well as many other families as they light a candle tonight. I know my house will be all a glow. I asked Cheryl for a brief update on the move to the new home. She said that the kids were very happy and felt so at home there already. Haley's presence is everywhere there, and Cheryl KNOWS that she had a hand in finding this perfect new home for their family. Cheryl said she was amazed at the endurance and strength she has had packing, moving and going through this process. It sounds like the Lord is filling her tank with the Holy Spirit, and she is getting through this difficult process. Of course there are days when the grief overcomes her and it is time to rest as well. Of all things, the children are happy. They deserve this time of Peace and joy.

Cheryl will be back to update as soon as she has a line to do so. Until then, I know it goes unsaid, please pray for this amazing family. They have been sent to do God's work, and I just Praise Him everyday for their courage to share this greif and this loss with us. So many lessons have been taught by Cheryl's precious heart and words. I know for me, I am hugging my sweet ones just a tad tighter and longer.

Here is a photo of Haley that I pulled off of "Make a Child Smile." I just smiled at how cute it was and just how pretty Haley was. So enjoy this "angel", and remember let those candles burn. God Bless!

Love, Lisa

Saturday, December 3, 2005 5:52 PM CST

I finally had my dream of Haley that I have been waiting for. I had it in the early morning hours of 12/1, the two month anniversary of her death. I dreamed she was sitting on my bed talking to me, at first she wasn’t even talking, just sort of conveying this message of love and peace. Then I asked her “Do you have your CD there?” and she said “No, we aren’t allowed to bring stuff, we have everything we need right here.” Then she leaned in so very slowly and kissed me. She looked so beautiful, her hair was long and so shiny it glowed, and her skin was so clear and perfect.

Another cool thing was as soon as Kendall woke up, she told me that she had had a dream about Haley. I asked her what she said, and she said “Sissy wants me to have a happy Christmas.”
That is my girl, still taking care of us.
Of all the questions I could have asked, why in the world would I care about her CD?? Too bad we don’t have more control over our dream-thoughts!

We are in the middle of the move. It has been extremely emotional, we find Haley’s things everywhere. And it hurts almost as much to know that where we put her things now…they stay. She isn’t here to make a mess or create laundry. I miss her with every breath I take.
We will sleep in this house 3 more nights. I am starting to feel a bit sad about that too. This is the only home Haley has ever known, and we have so many memories here, good and bad. The tears come so easily.

I wish I could just peek into Heaven and see her, just once. To know she is really okay. I have spent so many years looking out for her. I miss that. I miss being needed by her. Most of all, I miss being loved by her.

I still cry all the time, and it is hard to talk to people still. I would like to attend The Compassionate Friends meeting tomorrow in Bristol, but we probably won’t because the timing is so bad with the move and all. Still lots of work to do at the house.

We packed all day today (Thank you, Jennifer), with the help of family and a friend. It is so much stuff, and such a big house, and we, are of course not exactly in our right minds most of the time.

Once again, I will leave you with a Haley joke, she loved this one, and I apologize in advance if anyone thinks it a tad gross.

A preschool teacher says “Who can use ‘definitely’ in a sentence?
One child raises her hand and says “the sky is definitely blue”
The teacher says, “No, it can be red at sunset.”
Another child raises his hand and says, “The leaves are green.”
The teacher says, “No, they can be red and orange.”
A little boy raises his hand and says “Excuse me, do farts have lumps?”
“NO….” the teacher says.
“Well, then I DEFINITELY pooped in my pants”

Love and prayers,
Cheryl

Wednesday, November 30, 2005 7:19 AM CST

As I was going through yet more of Haley’s things yesterday. I just gave into the emotion and sat on my bedroom floor and cried. A minute later I felt two little arms snake around my neck and a warm head rest on my shoulder. No words were needed. A daughter comforting her mother.

I want to tell you the story of how God and Haley worked together to bring Kendall into our lives.

At about age 3. Haley decided she wanted a sister. We told her, No we were “done” after three kids. But she never stopped asking. She even went as far as to tell people in her preschool and our church that I was pregnant! People would come up to me and congratulate me! It got to be quite a joke around our town!

In the year 1999, Haley started kindergarten and Logan was in his last year of preschool. I was getting my first taste of freedom after having 3 babies in 4 years. In March of 2000, Bruce went on an Emmaus Walk (a 72 hour spiritual retreat). When he came home, he told me that on the Sat. night of his walk, he felt the Lord telling him we should adopt a baby who needed a home. I was shocked! I hesitated a few minutes, thinking how starting all over with a baby would impact my life, but very soon I realized this wasn’t about ME…if God was speaking, we needed to listen. (Did I learn nothing from Jonah?).
So, we contacted an agency, submitted an application, our only request was for a girl, a sister for Haley. We were told we would be assigned an infant in about 3 months. The very day they got our application, they sent us info on a baby girl, and asked if we were interested.

At that point, we were letting God make our decisions, so if she were offered to us, we were going to accept her.
A few days later we got her birth certificate and medical information. We sat down and tried to decipher it all (it was in Spanish), and suddenly something jumped out at me. Our baby, who was now 8 weeks old, was born on March 27th, THE Saturday night of Bruce’s Emmaus walk!!! There was no doubt this was the child God meant for us to have.
When Kendall was 11 months old, we were finally able to travel to Guatemala and bring Haley’s long awaited sister home.

They had such a close relationship from the start. Kendall called Haley “sissy”, she never used to real name ever. As soon as Kendall would get home, Haley would take her up to their room where they closed the door, and played for hours.
Now, Kendall wanders around after school, often telling me “I’m bored” or “There’s no one to play with”. She misses Sissy so much.

God knew I would need a comforting 6 year old, and I am so grateful we listened to Him. And I am so grateful Haley never stopped prodding us for a sister.

We are still in the midst of this chaos we call “moving”. I think it will be wonderful in the long run, I am happy every time I see another load of stuff going off to Good will. I feel like I spend so much time taking care of “stuff”. I am really longing for a simpler life.

I still haven’t heard about Haley’s Foundation, but it IS coming, just a lot of stuff to sort out.

Today I am grateful,
Cheryl

Sunday, November 27, 2005 2:19 PM CST
I want to start by thanking you all who wrote such encouraging messages to me in the guestbook. You would be amazed at how much comfort they bring to me.

Thanksgiving was hard. Harder than I thought it would be. I woke up in a foul mood. Just plain irritable. That is one of the symptoms listed in all the grief books….irritabililty….but I hadn’t really felt it until then. I just wanted to be alone, and snapped at everybody. My poor mom cooked all the food at her house, brought it all over, we ate about a 10 min meal, and Bruce and I both turned off the phone and went back to bed. Depressing.

Friday and Saturday were bad too,(sensing a theme here) as we started packing the house in earnest. It forces us to go through all the stuff we have collected over the past 10 years.
I found Haley’s journal from first grade, and it tore me apart. It was the year she got sick, and to see her so happy, and then the entries just end in Jan of that year, then pick up in April…with no mention of being sick, or the hell we had all been through. Just cute, first grade stuff. She never dwelled on the negative, never complained.

I was sick to my stomach by Sat night…stress or viral, who knows? So I missed church on Sunday, but Bruce took the boys.
I packed a little more on Sunday, but Bruce is doing the bulk of the work. I can’t believe how much stuff we have, and how much work moving is. And I have no energy at all.
I hope things are easier at the new house.

My counselor asked me last week if I thought I should be “further along” in the grief process, and I told him “no”, because I am not sure what the “process” is. But, after thinking about it this week, I do think I would have expected to be “further along”.
And I guess by that I mean, It never gets any easier or better, I cry all the time, I can’t even talk on the phone without breaking down, I have no control over my emotions, I still haven’t cooked a meal, or gone to the grocery store….and it is almost 2 months. It feels just the same to me as the day she died. I wonder if it will ever be any better…. Or do you just get better at controlling it?

I want to leave with one of Haley’s favorite jokes. It still makes me smile.
What do you get if you cross a Rottweiler with a Saint Bernard?
A dog who bites your arm off, then goes for help

Cheryl

Wednesday, November 23, 2005 8:05 AM CST

I didn’t want her to die. That is the first thought I had as I woke up Tuesday morning. My second thought was something sarcastic..along the lines of…State the obvious, why don’t you.
But, the thought persisted “I didn’t want her to die!” And I realized that this wasn’t rational, it was guttural. This was my inner soul screaming for my baby..I DID NOT WANT HER TO DIE!! I WANT HER BACK!!!
Rationally, I know she is gone from this Earth forever, but it doesn’t stop me for wanting her back…yearning for her. It was a thought that kept me in bed pretty much the whole day. I think my kids must think that is what moms do…lay around crying in bed all day. They barely bat an eye, although occasionally Kendall will wipe a tear from my face, or just hug me.

So, since I knew the day was going to be a bad one from my first waking thought, I took a Xanax (no lectures please), and just wallowed in it.

Maybe it was the drug, but the lyrics to a song kept coming into my head “Regrets…I’ve had a few” (Queen song maybe?) and I decided to list, in my head, all my regrets about Haley. They don’t tear at me, maybe because I am not far enough along in the grieving process, or maybe because I know we did more right that wrong. But, yes, regrets…I have a few…

I regret making Haley (and I) stay in Atlanta for 6 months following her brain surgery. It did no good, and kept her from the people and things she loved in what would be some of the last months of her life.

I regret not watching ALL her TV shows with her, there were a few I couldn’t take, and I would go to another room. Full House, for example is on 4 (at least) times a day. That show drives me crazy.

I regret not hugging her and kissing her more that last day in the hospital. I was trying to stay out of the nurses and doctors way. I should have made a place next to her.

I regret not insisting that she see a pulmonologist as early as last Spring. I knew something was going on, but I wanted it to be her liver, so I lived in denial. I couldn’t imagine there was something ELSE going on…but there was.

I regret not searching the country for the top lupus doctors, the same way we did for her liver doctors. For some reason, I thought her doctors all had to be at the same place. I wish I had searched for someone to manage her lupus more aggressively.

I regret being so depressed the last two years of her life that I didn’t have the energy to do more fun things.

I regret not talking to her more about Heaven and God. I think she knew more than me, but still I wish I had asked her questions, and found out more about how she felt about things.

I regret not taking that last fever more seriously.

I hope when she died, she forgave me for all my mistakes, and I hope she felt no pain, only love.
If love could have saved her, she would be here now.

I have been reading a book about near death experiences in children. Most of them relate a point where (as they were being resuscitated) they could choose whether to go to Heaven or come back. And, of course, I wonder what Haley’s experience was like. I hope she felt what it was like to have a healthy body, no more pain, and hospitals, and she just never looked back. I hope she got the choice, and she said, “I choose to go. Mom and Dad will be fine, I have had enough suffering. It is time to go.” That is what I hope.

Kendall asked me last night, “Can we stay here forever if we want?” I told her no, that Earth was temporary, Heaven was forever. But then I did what I wished I had done with Haley, I had a long conversation with her and described Heaven, much as it is described in the book “Heaven” by Randy Alcorn. I told her there would be no pain, hospitals, nothing would ever hurt, no one would ever cry, there would be no separation from loved ones, that we would meet Jesus!!
I told her the animals never bite or scratch, even lions and bears, we all live together in harmony and joy. There is food and homes to live in and playgrounds and trampolines. And music and books and toys, school and work…but all pleasurable. She was giggling as we finished, and I told her, Best of all we have sissy waiting for us. She just grinned at me.

“In my Father’s house are many rooms…..I am going there to prepare a place for you”(John 14:2)

Thankful this Thanksgiving for Jesus and His promises,
Cheryl

Sunday, November 20, 2005 10:47 AM CST
Yesterday Bruce, along with my mom, Nick, and our good friend Kevin dove to Atlanta to close up our apartment. Bruce says he did better than he expected, that it all just had a very “surreal quality” to it.
While they were gone, Jennifer came over, and we packed up Haley and Kendalls room. I started crying pretty much the second we started, so I took a Xanax, and just plunged in. It was very difficult, but so much easier to have someone else there with me to do it. Especially Jennifer. She loved Haley so much, I know she grieves her loss as I do.

I kept out some of Haley’s favorite clothes, and will have them made into a wall hanging. I plan to display her collections of bouncy balls and painted rocks in candy dishes in my office, along with her beloved “MacKenzie”, the stuffed giraffe that she took everywhere.

Once we move, I plan on running Haley’s Foundation out of my office, but I may be biting off way more than I can chew. I was a nurse before I became a full time mom…I know nothing about business stuff. I am praying for God to open the doors, and put the right people in my path. I want so badly to continue on Haley’s work. Haley never considered it her work, or her mission, she just did what her heart told her to do.

Last week was rough for me, the worst since the beginning of this nightmare. I don’t know why. I guess if someone had the definitive answer for grieving, there would not be the need for the 100 books on grieving, most of which now line my bookcase.

I do love reading all the guestbook entries, I read them every morning. They make me feel better. They make me feel people care. And I know thry do, because there are so very many children out there I care about too.

I am going to sign off with one of my favorite Haley stories, but first remember to hug your kids, say your prayers….No matter what our circumstances, God is good ALL the time. With much Christian love, Cheryl

This conversation took place in Feb. of 2001, after we had been at Duke for 2 weeks. Haley was 7, and Logan was 5.

Haley : “Logan, you have gotten taller!”

Logan : “Yes, and I am funnier too.

Haley: “No, you are the same amount of funny

Monday, November 14, 2005 5:09 PM CST

First, turn your speakers on and listen, really listen, to the music that Julianna Banana’sdad put on this site for me. (Thank you Terry). It is called “One More Day”, and after listening to it, and sobbing, Bruce and I wanted it on her site.
It also sparked a discussion….if we could magically have her back one more day, knowing we had to let her go again, with all the pain that entails, would we? You may be surprised we even had to think about it, but saying “goodbye” forever is the single hardest, most painful thing we have ever done.
Well, we decided we WOULD take one more day. And we would do all those things in the song…unplug the phone, turn off the TV, I would hug her, and kiss her a thousand times, and I would ask her opinions on EVERYTHING. I would want to know how she felt about absolutely everything. Most of you know how close Haley and I were, but still there are lots of things we never talked about. I would talk about music, books, favorite movies and tv shows, I would talk about God and heaven. I would tell her all about my childhood, and all about her babyhood. And I would tell her how much she changed my life, how I am a better person because of her, how she is my hero, the example I will live up to forever. I would try to find the words to tell her how much I love her.

A little while ago, I managed to get up and bathe, and tackle my walk in closet for the pre-moving job. (Goodwill stuff) I found stuffed in the back of my closet some blue jeans. As I pulled them out, my first thought was they were Nick’s, but I quickly realized they were the pants I was wearing the night Haley died. How did they get stuffed in the back of my closet? I have no idea. I have no memory of getting undressed that night. It really upset me, seeing those pants, I started shaking and felt dizzy enough I had to sit down. I threw away the shirt I wore that night long ago, and I guess I will these jeans too. Such a strange, horrible way to live.

We close on our house on Dec 5th. Hopefully, we will find the energy to get it all done. We bought plastic containers yesterday to pack Haley’s belongings in. Bruce commented no parent should have to do that. I agree. For now, we are going to pack most of her stuff away, keep out the most important things, and just store it. I am not ready to get rid of anything yet.

Bruce is going to Atlanta on Sat to close the apartment. Please be in prayer specifically for him, this will be a tough thing to do. Also pray for Aiden. He is having some health issues again. We need to pray for a cure for him!!

Missing my sweet, sweet angel

Thursday, November 10, 2005 9:06 AM CST

Those who know me know this story, but many do not, and it bears repeating.

After Haley firdt became ill, she had a hospitalization for pain control. Her gallbladder had become infected due to her liver disease. Even IV Demerol wasn’t helping her pain. Haley had grown up in church, praying and believing, but she was only 7. Her world was pretty black and white. She would cry, and say “Mommy, I am praying, but I still have pain. Why doesn’t God just make it stop?” I tried to explain that God may not answer our prayers exactly how we want, but that He is with us, and will make good come of all things. This poor little girl had been so healthy for her first 7 years, she had never even been on an antibiotic. She didn’t understand.
I went out in the hallway and cried. Then I prayed. I told God I would rather she lose her life than her faith.
I believe God answered that prayer.
Over the next 5 years, Haley had close call after close call, and endured much suffering. She came through each event with even stronger faith…even writing songs of praise to God during some of her hardest struggles. Haley’s whole life was lived to glorify God. And isn’t that the greatest purpose of all?

The more I reflect on her life, the more proud I am to have been a part of this child’s mission and ministry.

Our grief is still raw. We have bad days and horrible days. But we usually pull it together in the evenings for the kids. They try to comfort us the best way they know how, and it is really very sweet.
Watching Bruce miss Haley is painful. They had such a special relationship. Nobody ever messed with Haley when daddy was around. He loved her so much, and misses her as much as I do.

The kids go to school, and the house is so quiet. But I am not ready to really go out, or have people around. So, I sit home and nurse my very broken heart.

In other Vincent news, we bought a new house. We had been planning to move, and even had our house up for sale until Haley took a turn for the worse. We took it off the market to simplify things. We are going to move into the new house first, then list the old one. That way I don’t need to be running around getting it clean for showings, it will be mostly empty. It is strange to be moving to a house where Haley has never lived with us. Lots of memories in this old house, but many of them aren’t that great….My best memories are of watching her on the trampoline…and that is coming with us!

“When I am weak, then I am strong” (2 Cor. 12:10)

Tuesday, November 8, 2005 7:18 AM CST

First, let me thank all of you for your encouraging guestbook entries and emails. It is hard to believe what great comfort I get from your words. Thank you.

Saturday would have been Haley’s 12th birthday. Although hard, it wasn’t as painful as I expected. We had our closest friends over, ate brunch, and released pink and yellow balloons with messages attached to them for Haley to catch and read in Heaven.
Before we released the balloons, I read an essay written by Haley just 2 days before she died. It goes like this:

I Am by Haley Vincent
I am a special girl who loves to sing

I wonder if I have a talent I haven’t discovered yet

I hear the feet of one hundred dogs coming to lick my face

I see a thousand colored roses blooming right before my eyes

I want an airplane to fly me first class to wherever I want to go

I am a special girl who loves to sing

I pretend to sing in front of one million people on American Idol

I feel happy when I think about singing on stage

I touch the hands of people who dream of meeting me someday

I worry when I think about getting a liver transplant

I cry when one of my friends from Caring Bridge dies

I am a special girl who loves to sing

I understand that I need a new liver

I say “God is watching over me”

I dream about getting better

I hope I will get married someday

I am a special girl who loves to sing
The End

Oh yes, sweet girl, you were SO special, and we miss you so very much.

On Sunday, we went to church. I cried less than usual, but ended up having a pretty rough day. I guess because we were alone after having so much company. I just kept thinking, “She should be here, this isn’t right”. I felt a cloak of sadness covering me all day. We were supposed to go to our first ‘Compassionate Friends’ meeting, but couldn’t summon up the energy.
Monday I stayed in pajamas all day.

I do want to say thank you to all who acknowledged Haley’s birthday, with emails, entries, phone calls, balloons, and gifts. Especially to Lisa who sent a beautiful bouquet of pink and yellow flowers (Haley would have loved them), the Fry family who brought me a keepsake locket, Lynda for the willow tree angel (as I mentioned in an email to her, Haley used to buy those same angels for me, we have a beautiful collection of them, Becca for your sweet words and powerful prayers, and Jennifer, my rock, who is grieving this horrible loss, step by step by my side.
There are so many others, people who have agreed to help with Haley’s Foundation, meals delivered, over 500 condolence cards, flowers, the list is endless.

Haley was so loved. The funeral home we used said it was the biggest service they had ever done, well over a thousand people. To all of you…thank you for loving our daughter.

I have so much more to say..funny I update so much more now than when Haley was alive. I will probably be back here later this week.

With loving gratitude for friends,
Cheryl

Wednesday, November 2, 2005 8:27 AM CST
Logan came to me this morning and said, “Mom, I had a dream about Haley. She came into my bedroom, and asked me if I had brushed my teeth.” Then he said, “I could see so much detail of everything in my room, and of her, I am not even sure I was dreaming!” I asked if her hair was long, and he said yes, and she was taller.
I always imagine in Heaven, her hair, the neurosurgeons cut off in Jan. is long again, and of course, if she is healthy, then the steroids would no longer have stunted her growth.
I think Logan is lucky; he is the one who dreams of her. He dreamt before Halloween that she told him she would be trick or treating with him.
I wonder if she doesn’t think I am ready to hear from her yet, I would love a happy dream of my sweet girl.

When Haley was 6 (the year before she was diagnosed), she came downstairs one day and told me Jesus had visited her in the night. I said, “You dreamed about Jesus?” She said, “No, He was real. He sat on the end of my bed”. Some part of me sensed this was a monumentally important moment. I asked her what He said. She said, “He told me not to be afraid, that He would always be there with me.” At the time, she was nervous about sleeping alone in her room, and I thought this is where she needed comfort. But shortly thereafter, she began a 5 year battle with illness and disease, and she never needed Him more.

In many ways, we are “lucky”. Believe me, that is hard to even WRITE!! I guess “blessed” is the better word. We can see reasons behind Haley’s suffering; we can see purpose behind her life. She saved SOULS for God!! I don’t think I have ever personally led anyone to Christ, but I know my daughter has. She has comforted sick children with laughter and love. She has taught adults about the value of their children and the preciousness of time. And we forever have her beautiful voice and feelings on CD. What a gift. We made it for others, and yet now it has become an amazing precious gift for Bruce and me. Because of Haley, we have made so many friends and new relationships. We look at everything differently.
Because of Haley, a Foundation will be set up to benefit other children struggling with illness.
Yes, her life had meaning and purpose. But, although it offers comfort, her loss is no less painful to those of us who miss her so very much. Sometimes I think, “God, couldn’t she have done all that and still lived? Did she have to die to fulfill her purpose?” One day, I will know the answer to that question.

Although I continue to bathe and dress only when I feel like it, and I cry buckets every day, even though I still can’t walk in her room, I do feel like we are taking “baby steps” through this grief process. There are times (not many) that I can talk about her without crying. I called my friend Lisa, and we had an actual conversation.

I am going to end this with an excerpt from a book that Cheyenne’s Dad so generously sent to me. The book is called’ Heaven’ by Randy Alcorn, and this passage is found on page 73
“As the apostle Paul tells us, though we naturally grieve at losing loved ones, “we are not to grieve like the rest of men, who have no hope” (1Thessolonians 4:13). Our parting is not the end of our relationship, only an interruption. We have not “lost” them, because we know where they are. They are experiencing the joy of Christ’s presence in a place so wonderful, that Christ called it “Paradise”. And one day, we are told, in a magnificent reunion, they and we, “will be with the Lord forever. Therefore, encourage each other with these words.” (1 Thessalonians 4:17-18)”

Anticipating the Reunion,
Cheryl

Saturday, October 29, 2005 11:03 AM CDT

I have mentioned before that one of our favorite things to do together was to watch “The Gilmore Girls”. . Haley called us The Gilmore Girls all the time. The last words she and I spoke was to sing that theme song to each other:
“When you need me, I’ll be there,
All you have to do is call
And I’ll be there by your side’
Wherever you are, I’ll be there”

We sang that as she tried to distract herself from the respiratory therapist fruitless attempts to draw blood gases (blood from an artery rather than a vein), they were even sticking her femoral artery.

After that, she gave Bruce and me a couple of sweet smiles. Soon after she had a seizure, and was intubated. She never regained consciousness.

Sweet Haley, that song was so true…we were always there for each other. I am so sorry you had to take the final step alone. You have no idea what I would give to change it.

Haley asked me over the course of her illness if she was going to die. My answer was always the same, I sail “No, because I couldn’t bear it if you left me”. I was right and wrong all at the same time. And of course, we had every reason to hope she would get a new liver and do well. After all, no one had ever died waiting in Atlanta. Not till Haley.

It has been brought to my attention that these recent journal entries are a little depressing. If it’s hard to read, try living it. I am continuing this site for two reasons…1. It is a form of therapy to write things down, and to get the supportive guestbook entries and emails it generates, and 2. It will help other CB families who, sadly, will follow in our footsteps. I have looked up many “Angel” sites to see how parents have dealt with the first days, weeks, and months. Somehow it helps to know I am not alone.

I realize I am extremely blessed to have been Haley’s mom for 11 years. She was beautiful, talented, brave, kind, compassionate, and funny. She was my best friend. It wouldn’t hurt so much if she hadn’t been all of those things or if I hadn’t loved her so very much. The thing is, 11 years wasn’t enough, I wanted 11 more…and then 11 more..And on and on. I wanted HER to outlive ME.

Maybe one day, I can look back on my memories differently; in fact I fully expect that. But today, exactly 4 weeks since her death, they hurt like hell. The funny, sweet things I remember her doing only serve as a constant reminder that she will never do them again. I will never hear her sweet voice in person or watch her dance.

Please don’t tell me to look on the bright side. My world is dark today, and it will be for a long time.

Missing my Gilmore Girl,
Cheryl

Wednesday, October 26, 2005 12:57 AM CDT
I have spent the last almost 5 years of my life worrying about Haley. Worrying about every lab result, CT scan, new symptoms, Is she pale?, Is she flushed?, Is that a new rash? Is she limping more?, Is she more short of breath today? I always though I was worrying about those things, but what I was really worried about, in the back of my mind where I never ventured, was that I was going to lose her. And my fears came true. All that worrying for nothing…or for something, depends on how you look at it I guess.

Yesterday, Bruce told me I “looked better”. I puzzled over that for a moment because I certainly didn’t feel better, when it hit me. I had bathed. It was the first time in 3 days. I only did it because I was meeting with the counselor at church. Before you all are too disgusted, I do brush my teeth every day…but that is really more a comfort thing for me. I don’t think Bruce would be shaving or showering if he didn’t have to go to work each day. His nurse has to ask his patients not to mention Haley before he sees them. He can’t talk about her without crying. Neither can I. I can’t imagine this pain ever getting any better. I feel like an alien. There is no world I belong in anymore.

Bruce wants to go to church tonight, they are discussing predestination vs free will, and he is interested (I am sure because of how it applies to Haley). I can’t imagine gathering the energy to go, but if it will give him some comfort, I need to try.

Haley’s birthday is soon. It scares me. Grief is scary.

Missing my baby,
Cheryl

Saturday, October 22, 2005 1:54 PM CDT
C.S. Lewis had a name for it, the “laziness of grief”. What it means for us is we do nothing. I move from my bed to the sofa, and back. I rarely bother to change out of pajamas. I am embarrassed at the sink of dirty dishes, and loads of dirty clothes. But it seems impossible to move. Bruce is working half days, but as soon as he gets home, he becomes as paralyzed as me. He sleeps as an escape. I wish I could sleep. I wish I could eat. I have lost 20 lbs in 21 days.
Three weeks ago today, I woke up not knowing that was the last day of Haley’s life. The last time I could hug and kiss her, the last chance to say what I needed to say, all gone in just a few hours.
I know she is in Heaven, I know I will see her again, but in the meantime I am so very sad. I don’t know how I would cope at all without my faith. How do people who don’t believe in anything get through things like this?

I have been working a little on Haley’s Foundation. Thanks to a very nice lady, we have a domain name and webmaster. Now I am going to start wading through the legal and IRS stuff. Anyone with any experience setting up a foundation, please email me. Any advice would be much appreciated.

Missing Haley,
Cheryl

Tuesday, October 18, 2005 8:11 AM CDT
Thank you all for your words of comfort and love…and especially thank you to Lisa for stepping in when I could not.
I am still not sure I can keep up this journal, I will just have to see one day at a time.

I have been told that this Earth is as close as Believers ever come to Hell. I believe it, because surely I am in Hell.
I have lost my baby, my daughter, my constant companion, my best friend….and the pain is truly unbearable.
I miss so many things, we drove thousands of miles back and forth to Atlanta, and shared hundreds of conversations, we loved all the same music, we would listen to Point of Grace or Shania Twain for hours on those rides.
I miss seeing her at the computer writing her newest novel..she must have 10 started, she had so many ideas. She was so creative. And so content. When pain and shortness of breath slowed her, she just found things she COULD do, never complaining about what she could NOT do. We would sit side by side for hours, sometimes I would do a few chores while she kept me company. I would help with her schoolwork, and then we would watch “The Gilmore Girls” together. Haley used to say, we WERE The Gilmore Girls. I don’t think I’ll ever be able to watch that show again, or Full House, or Lingo, or Whose Line, or listen to POG or Shania Twain. I can’t even walk in her room.

Grief is shattering, a million times worse than I could have imagined. Nothing makes me feel better. I find comfort nowhere.I cry buckets of tears, and sob so loud I am afraid the neighbors will hear. Sometimes, I feel this panicky feeling like I want to run through the house screaming for her…like when you have lost your kid at the mall. Only I know I won’t find her.

I can’t relive her last day. It is too painful. But, Haley died from a strep pneumococcus bacterial infection. She became septic. However, this is a common bacteria most people can fight. But Haley had extremely low complement levels (Part of the immune system, affected by both lupus and cirrhosis), and a non working spleen (due to liver disease). If she had gotten her transplant, those conditions would not have existed, and she would have been able to fight off this infection. So, her death certificate may say she died from an infection, but she really died because she never received her liver. She waited at the bottom of that list for months, and then, ultimately, she died waiting.

Haley had such an impact on so many people, and she had such a heart and compassion for sick children, we want to honor her life by continuing her work. Along with our Church, we will be establishing “The Haley Vincent Foundation”. We are in the process of writing our mission statement and goals, but it will some way provide love and comfort to sick children through music. Right now, I am looking for an experienced person to create the web page for us. If interested, email me.

Hug your kids today, talk to them, I always thought I would have more time…..don’t make that mistake.

Loving Haley,
Cheryl

Friday, October 7, 2005 1:42 PM CDT

(This is still Lisa Here, I am keeping up the the page, as Bruce asked me to.)

I sat and prayed and asked God to inspire me to write something that honored Haley and all the Vincent's. I am not sure if my words are adequate, but this is what my heart tells me to say.

Haley Christine Vincent was the light of her Mommy and Daddy's eyes. She was the big sister to Logan and Kendall, and one little sis to Nick. At the service, her Grandparents and relatives were gracious and loving, although aching from their loss. The service was just as I dreamt one would be like when saying good-bye to an angel. Beautiful, sweet, powerful, full of God's word, and yet horribly painful.

The flowers were many, the tears were more. But Oh when the beautiful choir sang "I Can Only Imagine" I could almost hear the sweet voice of Haley singing along. There was a video of Haley, so alive and so "her." Then came her voice. We were blessed to hear her sing her songs "Everywhere" and "Sarah's Song" while we said good bye to this child that lived more than any child I have ever met.

Haley was spunky, funny, and the most caring child (and probably person) I have ever met. I say this not today, because she is gone, but I have said it since the day she walked into my son's hospital room three years ago. Haley Gave more of herself than she ever took. She sang at events, and as everyone knows she sang for the children. I am blessed to say I am a recipient of that gift. "Hots" was written for my little boy, and it made my son happier than seeing Barney or going to Disney.

As I sat listening to "Sarah's Song" at the service, I leaned in and squeezed the hand of Sarah's mother. I looked at her and realized that her song was such a GIFT! Not just to Sarah, whom Haley meant it for, but now for ALL of us. It is her legacy. A piece of Haley that she has left for all of us. It shows us everything that was her. It shows us how even though she suffered with incredible pain, she could look over at her sweet friend Sarah, feel compassion, and then be inspired and write that song. THAT was Haley. There was something she didn't know that day when she was singing it next to Sarah's bed in the hospital. She didn't know that ALL OF US, would be forever changed by that and her other songs. We now are fortunate enough to walk away from this tragedy with an eternal gift from this angel.

Cheryl and Bruce told Haley they would honor Haley for the rest of their life, and I am asking you to do the same. Please tell your loved ones about this child. About her short life. Tell them about her passing, and how organ donation is so important for us all to consider. Haley will never be forgotten. Please keep the Vincent's in your constant thoughts and prayers. Please know that they need our love for years to come.

I am honored and yet sad that I am updating this site. Please come by and continue to visit. Send your love in their guestbook. And never let this flame burn out.

God bless,
Lisa Hawk

Monday, October 3, 2005 9:59 AM CDT

****CHANGES HAVE BEEN MADE:

THE VISITATION for Haley's service has been cancelled. PLease note that now the service will begin at 6:30pm. There will be no 3:30 - 6:30 visitation.

Here are the funeral arrangments that have been made:

Wednesday, October 5, 2005
Service at 6:30 pm
Celebration Church, Blountville TN

I also am going to post the most beautiful obituary I have ever read. Please keep this precious family in your thoughts. I know that Haley has touched and changed and even SAVED lives for Christ all over this country and globe. If we all come together and pray for this family, I know the Lord can help bring peace. God bless you all.

Haley Christine Vincent, 11, Kingsport

KINGSPORT - Haley Christine Vincent, 11, at Holston Valley Medical Center on Saturday (Oct. 1, 2005) at approximately 11 p.m., Heaven's gates opened wide, and the newest sweetest singing angel stepped through.

Throughout a brutal combination of illnesses, Haley never lost her faith, nor her love for her Lord, Jesus Christ. She fought a brave 5-year battle, and endured on this Earth, far more than any child should. Instead of becoming
bitter, Haley became compassionate towards other children fighting illness.

She composed, sang, and performed her original music, chronicling her illness. She made other children fighting these diseases feel better, and she raised money for the ALF and the CHOA. Besides being a talented singer, Haley was an accomplished writer and artist. Words cannot express how she will be missed by her parents, Dr. Bruce Vincent and Cheryl Weston Vincent; her two brothers, Nick and
Logan Vincent; and her sister, Kendall Vincent, all of the home. There will be a "Haley Sized" hole in our hearts that lives forever.

She is also survived by her maternal grandparents, Pat Weston of Kingsport, and Bob and Vel Weston of Littleton, Colo.; paternal grandparents, Robert and Bettie Vincent of Kingsport; numerous aunts, uncles and cousins; as well as
her special friends, Jennifer and Kevin Fielders, and their children, Luke and Henry.

Haley was a student at the Robinson Middle School where she was in the 6th grade. She was also a member of the Celebration Church.

In lieu of flowers, memorial contributions may be made to the American Liver Foundation, Midsouth Chapter, 1010 June Road, Suite 101, Memphis, TN 38119 or to Children's Healthcare of Atlanta, Attn: Gift Processing, 1687 Tullie
Circle, NE, Atlanta, GA 30329.

Arrangements are incomplete and will be announced later by the Carter-Trent Funeral Home, downtown Kingsport.

Condolences may be sent to the family via e-mail at
cartertrentfh@earthlink.net

STILL HEARING HER SING,
Lisa Hawk

Saturday, October 1, 2005 11:35 PM CDT

Haley is in the arms of Christ. She passed to Heaven to a peaceful place with no more pain and no more suffering.

Haley's ANGEL voice has now been added to a choir of angels that we can hear in our dreams.

Please pray for this precious family, during this time.

sadly,
Lisa Hawk

Oct 1, 2005 9:20PM CDT

(This is Lisa, (Aiden's mom) giving an update.)

URGENT PRAYERS are needed for Haley. I have very little information, what I do know is that Haley is in critical condition. She is in ICU, supported on a ventilator. She is unresponsive at the moment. We do not know the cause. She has spiked a terribly high tempature, (106) her blood pressure is very low, and heart rate very high. At this moment, details are uneccesary, just please stop what you are doing and Pray! Haley needs our prayers now more than ever.

Haley may be medical flighted to Atlanta or Knoxville, in any case pray for safe travel and peace for her parents. Pray for peace for Haley's precious siblings.

Thank you. I will update as soon as I know anything. God bless!

Love,
Lisa

Thursday, September 1, 2005 7:07 PM CDT

Sorry to be so long in writing an update, I hope you all didn’t give up on us!!!

The truth is, there isn’t too much to talk about. Our lives are going along as usual.

We moved apartments, and our new place is much closer to the hospital. It is very small, and to be truthful, a little dumpy and depressing…but it serves its purpose. I only hope we don’t have to stay too long at a stretch. We can’t get TV service (the cable lines are cut, and we can’t get satellite service), and since there is little else to do..well, it is depressing. The cable company said they would fix it, but it requires us being there, and we are always so anxious to leave, I am never willing to do that. Guess I’ll have to bite the bullet sooner or later.

While we were in Atlanta last week, we had lunch with some of the people from Childrens, and a very nice lady who supports Childrens financially. She brought Haley a beautiful necklace from Tiffany’s, and a couple other nice things. How very sweet of her.
We are going to a party at her house the end of September, and Haley will be singing. Her Hepatologist will be speaking at the party.
On the 17th of Sept, we will be participating in the telethon for Childrens via live radio.
And tomorrow, we leave for Nashville to see Point of Grace in concert, one of Haley’s very favorite bands. I am hoping we can meet them, and give them one of Haley’s CD’s.

Medically, things are not a lot different. Her liver labs are trending up, but noone is surprised at that. Her 02 sats are still lower than they should be…she was 95 in the office. They know “something” pulmonary is going on, just not what it is. As her symptoms progress, we will do more testing. For now, we are just waiting for the other shoe to drop.

We will travel back to Atlanta on September 11th. We have appts the 12th and 13th. I will try to update sooner next time.

Until then,
Cheryl

Saturday, August 13, 2005 7:49 PM CDT
When we go on vacation, Bruce and I have our different jobs. I pack the bags, and he loads them into our car. It went quite smoothly...until...about 50 miles down the road (right about the time the whining was beginning); I started to look for the bag with the DVD's and CD's in it. After about 20 minutes of rummaging through the trunk (while the car was on the highway at 70 miles an hour, because Heaven Forbid, we should STOP, and mess up our TIME), I came to the conclusion that my husband had packed that bag in the turtle on top of our car. But, don't worry; our dirty laundry was in easy reach, right there in the back.
SO...10 hours with NO movies or music!! Sheesh, it was like living in the 1980's or something. :)

We had a really great time...although we may start looking for a beach a little closer to home. :)

Haley had some leg pain before we left. Different from her usual pain. So we spent the hours before leaving, between the hospital and the doctor's office. After an ultrasound ruled out a blood clot, it was decided she had a cellulitis of her leg. So, she had to be on antibiotics for her vacation, but the pain was much better in a few days.
Other than that, she is doing well. She is still short of breath with any exertion. I imagine that will be addressed again next week when we head back to Atlanta.

We will be moving apartments next week, to be closer to the hospital. Really looking forward to that...

This is short, but there really isn't much going on..I will try to update after we see the doctors next week.

Hugs,
Cheryl

Tuesday, July 26, 2005 2:04 AM CDT
We are leaving again very soon for the beach, but before we go, I have another beach story to share…
One day my friend Jennifer and I decided to do a little shopping on the island. There are about 4 stores on the island, so our choices were limited. We decided on ‘The Christmas Shoppe’. Seemed like a fun thing to do.
We were browsing, and some really pretty advent calendar houses caught our eye. We were discussing how I could fit 4 little gifts into the little windows of the calendar/house, when the lady came from behind the counter and entered (uninvited) our conversation.

Her: Four kids? Don’t you know when to stop?

Me: Well, two of them are adopted. (Why I felt the need to defend myself I will never know…if I want to give birth to 20 kids, that is my business)

Her: Oh, where did they come from?

Me: (Inching my way away from her) One from the US, the other from Guatemala.

So, she leaves us alone for a minute, we decide to each buy a house, and as she is ringing me up, she eavesdrops on the conversation I am now having with Jennifer.

Me: I am going to breed Cara for one litter of puppies.

Her: What?? Why don’t you go the the pound…don’t you know how many unwanted dogs are there?

Me: Well…I have children, I would like to know who the parents of the pups are, you know so I can be sure of the temperament of the dog.

Her: Oh, I guess that means you met the parents of your adopted children. After all, you would want to know if they were going to have bad temperaments.

Jennifer: Uh, we should get going…..

Me: Children are Different From Dogs!!!!!!!!!!

Her: Has she been in heat yet?

Me: (snarling a bit, at this point) Noo

Her: Well, maybe we will get lucky and she will be barren.

OH YES SHE DID…She wished barrenness on my poor dog.

Jennifer: (steering me a bit toward the door) We really better go…

Jennifer and I stared at each other for a minute outside, and then laughed so hard, we had tears. Don’t think I’ll be buying anymore Christmas stuff at the beach.

The other story I want to tell is of me trying to take a nap. This is something I NEVER do, and now I know why. I knew my kids would want to bother me, so I asked ALL of them to please let me sleep for an hour and a half. 90 short minutes.
In those 90 minutes, I was interrupted 8 times. That means my family can function without me for about 11 minutes at a stretch.
Now, there were 2 other adults in the house at the time, their dad and their grandma.
So, what was so important ONLY mom would do…

1. Unnamed child comes in to inform me there is no toilet paper in the downstairs bathroom. We have 5 bathrooms in our house, and extra TP under every sink.
2. Kendall comes in to ask where Haley is.
3. Bruce comes in to get laundry..he is going to wash clothes while I nap. Great honey, just leave them in the family room till I get up, you don’t have to put them away.
4. Logan comes in just to stare at me for a minute
5. Kendall comes in to ask where Logan is.
6. Bruce comes in to put laundry away (see #3)
7. Nick comes in to ask me if I REALLY want him to clean out my car (His dad asked him to)
8. Kendall comes in to tell me the dog threw up on the trampoline.

Not much of a nap, now I remember why I don’t try! And Bruce had the nerve to blame me! He said, “You really shouldn’t try to nap in the bedroom. You should hide”
Are you KIDDING Me!!!!????

Haley is doing well. Moderate pain, still rash-y. Doing the good days/bad days dance. She saw the eye doctor today. She still has a small cataract from the steroids, but it is stable.
We see the new Nephrologist in Johnson City on Thursday. I hope things work out with her.

We are going back to the beach on Friday, so probably no updates till I return…8/6.

Thank you for checking in. We love you all. God bless you.
Cheryl

Sunday, July 17, 2005 8:48 PM CDT
Having spent about a million hours and miles on the highways between Georgia and Tennessee, I consider myself somewhat of an expert in certain aspects of each state.
And my expert opinion is…Gergia is HOT. It is rumored that Florida is hotter, but since my makeup actually melted off my face today, I would need to be convinced that there is a hotter place anywhere on this planet. My mistake was spending several days in the mountains of Tennessee and then driving straight south for 300 miles. There should be some kind of acclimation program available!

But, all the driving was worth it, because we were special guests last night at the Crazy 8’s race in Kingsport. Haley was the “torch bearer” at the race. She rode, with her lighted torch, on the back of a golf cart,(amidst much cheering) and then was seated on the stage, where we had the best seats to see the start and the finish of the race. We had so much fun. Haley was so honored to be a part of such a big event in Kingsport. For those of you who don’t know, Kingsport Crazy 8’s race holds the World Record for 8k times, so it attracts runners from all over the world. A man from Ethiopia won with a time of around 24 mins.

We are so lucky to have our community support us in so many ways. We are grateful, beyond words. And to have so many wonderful people in Atlanta embrace us as well, surely God’s hand is on us.

We see the Nephrologist (kidney) tomorrow. Haley’s kidney numbers were slightly up, but her Hepatologist (liver) thinks it may just be some dehydration. So, we are making her drink like crazy. We know all the best and cleanest bathrooms between TN and GA…of course, cleanest just means least disgusting. Thank heavens for anti bacterial wipes, sprays, etc…..I wish I had thought to buy stock in one of those companies years ago…

We drive back to TN on Tuesday, and get to stay a few weeks!!! I won’t know how to act in my own house for that long!!
Between Aug 20th and 30th, we will be moving apartments…from Lawrenceville to much closer to the hospital. It will be nice to be so much closer.

Okay, I am exhausted, that drive is tough (4 times in 5 days, anyway).

Good night. Love you guys,
Cheryl

Saturday, July 2, 2005 4:23 PM CDT
I know what you are thinking…it’s about time she took down that depressing update. Yes, today is a new day, and we are back in the saddle (Wait…I am thinking of some more clichés….) ready to run with the bulls, smell the roses, and go look in the bush for those two birds! Okay, you get my drift here, I am sure.

I had many (MANY) requests for the email update. If you haven’t received it, you will in the next couple days, I am so far behind on my email. Yikes!! Thank you to those who requested it, I was touched by how many people contacted me. I had a couple returned as undeliverable, so if you don’t receive it by next week, try me again.

We are in TN now. The plan was to return to Atlanta for oral surgery on the 5th, but the best laid plans……(I am a cliché-o-maniac today). I called this morning to confirm and find out what time to be at the hospital Tuesday. Imagine my surprise to find out Haley was not on the schedule. Well, it is Friday, and by law many pediatric specialists are unable to work on Friday, so the dentist was unreachable. The nurse at the hospital was, however, able to secure the cell phone number of the good doctors “scheduler”. She informed me that the hospital was supposed to have called me two weeks ago to let me know Haley had been bumped from the schedule for an emergency. An emergency? Two weeks in advance? Something smells fishy!! BUT, the bottom line is no surgery Tuesday as we had planned. And, I guess we just pray that her broken tooth doesn’t get infected in the meantime.

The good news in this is now we can stay home longer. We don’t have an appt with Dr Romero until 7/14. Then we see Dr Warsaw (kidney) 7/18, then hopefully back for a week, then back to the beach for a week. And then school starts 8/8.

This summer is going to be crazy busy!! We are also moving apartments in Atlanta. We are moving to a smaller (1bedroom) place closer to the hospital. We have to move between Aug 20 and 30th…REALLY looking forward to that! BUT, it will be so nicer to be at the hospital and never even have to get on 85.

As far as Haley news. We are having a really good week, and I thank God for it, because I really needed it. She is having very little pain, only used meds once or twice since we have been here. Her rash is looking better with her magic Aveeno cream (There is a story there, if any of you remind me, I will tell it soon).
We have been to the mall twice, seen two movies, “The Perfect Man” and “Bewitched”. Both fairly marginal for the parents, but the young girls loved them. We also did some shopping, better than medicine for my Haley. She bought an outfit at Justice, and earrings, bath and body stuff, books….she did all right. Do we overcompensate with her? Absolutely! We spoil her rotten!

So, we continue on with our lives.....
As a very brave woman once said,
“Pray not for a lighter load, but a stronger back.”

Thank you, my friends for caring enough to continue to come here, pray for us, love our daughter, sign our guestbook, and all the many, many things you do. We love you.
Cheryl

Saturday, June 25, 2005 11:06 PM CDT
This will be a little bit different than usual.
Bruce, Haley, and I met with the hepatologist for over an hour. After his physical exam, he let Haley go to watch the movie in the labby, and we talked.
That conversation will be covered in an email update.Some of the details are distressing to Haley.

Mext time, I will be back with the usual update. If you are not on our friends/family email list and want to get this update, you can email and I will add you to the list.
Please don't hesitiate to contact me.

We need lots of prayers right now...that God's will becomes clear to us. Pray for strength, discernment, and renewed hope. Please pray for our doctors, for their peace with their decisions, and wisdom to make te right ones.

Much love, Cheryl

Monday, June 20, 2005 1:12 PM CDT

We had a wonderful time at the beach. Haley wants me to say she felt great, and everything was fine. She says my journal entries are too “negative”.
So, we all frolicked on the beach, found out Haley’s liver disease was really only a bad case of gas, and went home to one (and only one) house to live happily ever after.
Hmmm…is sarcasm better than negativity?

Okay, before we get to the actual beach trip, it has been brought to my attention by a few (lots) of well meaning people that some people may have initially gotten the wrong idea about the “magic bullet” I so raved about in my last journal entry. I made it clear that it was a KITCHEN tool, but I can see where some people may have gotten the wrong idea. And if you go back and read it with THAT idea (and I think you all are following me here) it is actually hysterically funny. And what is funnier, is I am so naïve, that another meaning never even occurred to me!
And at the risk of being made fun of AGAIN…we used our magic bullet every day! It was amazing. We made milkshakes, smoothies, chicken salad, even pancakes.

Another good beach story…I will call it “The Turtle Walk”. If you have ever been to Jekyll Island, you know it is well known for the sea turtles that make their way to the beach and lay eggs at night. Every night they have “turtle walks” where you go out with a trained turtle expert (AKA freak) to look for turtles. Well, one of our peoples would not rest until there was a turtle walk! Haley and I stayed at the house as it was late, and we knew she would have a hard time with all the walking, but the rest of the group went. Well, they walked (at a ridiculously fast clip) down the beach for over an hour, after having sat through a 45 minute power point presentation….which I believe was especially appealing to the 3 year old.

Needless to say, there were NO turtles spotted. In fact, by the time they returned, our people were convinced there actually were no turtles…it was, as they called it, a “snipe” hunt.

The last night of our stay I decided to take one last walk on the beach. I walked a very long time, and it got dark. As I was walking back to the beach house, out of the sea came a huge sea turtle. I never would have thought a turtle could be beautiful, but it really was. It was so graceful just swimming up to the shoreline. I ran (which is when I discovered that I am in TERRIBLE shape) back to the house and gasped out “turtle”. Everyone ran to the beach, but alas, my turtle had swum back to sea. It was a gift, just for me I guess.

I am emailing some beach pics to my friend Lisa to post for me, so they should be up soon. She is so good to do it for me; I am just an idiot with the pictures! And speaking of Lisa, our Aiden is in the hospital again. Seems his poor little body got a little TOO immunosuppressed with that last rejection episode, and now all his blood counts are way too low. Hopefully it will just be a few days, and just a matter of med adjustments. Go visit their site, he is too cute, tell him Haley sent you.

We are hoping to get over to Children’s to visit, but Haley has been feeling “ick” lately.

Yesterday, we went to see The sisterhood of the Traveling Pants, we were there about 5 minutes and we had to leave because she became so nauseous. I felt SO guilty that I didn’t have something she could take with me. We really need something better for the nausea, phenergan makes her so sleepy, and the phenergan gel is almost impossible to get compounded here in Atlanta (Don’t get me started on how the big city pharmacy can be less sophisticated than what we have in Kingsport). We have no experience with Zofran, but I may ask her GI on Thursday…don’t know if it is okay with liver disease.

Today we were supposed to tape an interview for radio, but Haley didn’t feel well enough to go. (Not to sound negative or anything). The person who is coordinating it was really nice, said she could still do it, at another time.

Please go visit the Crazy 8’s site above. Especially if you live in Kingsport..it is a great, not to be missed, event.

As always, thanks for coming by. Please continue to pray for us, we need it..we are growing very weary these days.

Love and hugs,
Cheryl

Thursday, June 9, 2005 1:10 PM CDT

We have been dealing with Insomnia at our house lately. I have always been the world’s worst sleeper…I only sleep if it is chemically induced. Last night, I was NOT sleeping around 2am, and started watching Part 2 of the Blair Witch Project. BAD IDEA. The mediocre movie somehow sucked me in, and it was also a little scary!

The conditions that promote good sleep were lost at the beginning of the “bedtime”, when Haley announced she had a headache. I am not an alarmist, but if anyone wants to know what happened the last time Haley had a headache, go to the journal history, late Jan-early Feb. It wasn’t pretty. The headache did go away, but I wouldn’t sleep until I knew it was gone, and then she MOANED in her sleep half the night. I woke her up a couple of times to say, “Are you hurting?” She would mumble “No”, and I would feel a little better. I know so many of you reading this can totally relate to watching your child sleep…and WORRYING!!

Yesterday Bruce and I drove to Johnson City to buy new furniture, and I started crying on the way. For NO reason, other than I was worried…just free floating anxieties, just lots of “what ifs”, too much thinking.

So…the after we got to Johnson City, we spent ALL day buying furniture. We bought a new bedroom suite (our old one is 16 years old) and a sectional sofa. Bruce may not let me come back too often, if I spend that kind of money when I come back!!

On the way to Johnson City, we talked about selling our home and how much we all disliked the “price reduced” sign in front. I told Bruce, just take it down…it’s our house, if you don’t like it take it down. Logan piped up with “Yea, it makes us look desperate, let’s put up a sign that says “Price increased”.” Can you imagine? It made me laugh. I don’t thin we will be selling it this summer, and that is okay. Once school starts, we won’t make the kids change during the school year. They have enough upheaval in their lives.

This update is taking me forever to finish, I started in TN last week, and we are now back in Atlanta.
We saw the Rheumatologist Monday. He wants Haley to start PT, as she is guarding her feet and walking funny from the pain. That will be fun to coordinate.PT in two different states. Other than that, he wants her to see a kidney specialist on Friday. He is concerned about her numbers, although not terribly high, because lupus and kidney disease go hand in hand, and he wants to nip it in the bud.

Wednesday we went for labs.

Today (Thursday) we saw Dr Romero. We got new standing orders as we found out; once again, the lab didn’t run her Prograf level. So he made it nice and neat and CLEAR for them on one sheet! I am really not complaining though, we get such amazing care at Children’s. It is just such a pain to drive back for labs!

Dr Romero said the transplant team is meeting Tuesday, and he will recommend Haley being re listed, although her PELD/MELD score will be low. We will meet with the surgeon in the next month or so to explore living related donor options. Bruce wants to be her donor so bad, he will be heartbroken if he doesn’t match. Please pray he matches her.

Most of Haley’s problems right now are hemodynamic, due to the extreme shunting her body is doing. Her body is compensating so well, her labs are actually pretty good, but her body is working SO hard to normalize things, her BP and heart rate are very high, she is short of breath with ANY exertion, she has more clubbing of her fingers, and her o2 sat was 96. Dr Romero said if her sat drops any lower, he wants to repeat the bubble echo. I think she is a good candidate for developing hepatopulmonary syndrome.

Tomorrow we see the kidney guy, and then Saturday, we head for the beach. For a week! Yea!!

And I have a great new toy to play with at the beach. It is called The magic Bullet. They sell them on TV, and I got totally sucked into the infomercial and bought one, and let me tell you, they truly are MAGIC!! Smoothies, milkshakes, chicken salad, chicken quesadillas….it does it ALL!

Bruce said the magic bullet did more for me that the 2 antidepressants put together. I have an extremely unnatural attachment to it, and of course I got one for my best friend, Jennifer, too. She is the kind of friend who will not only follow me into my nuttiness, but embrace it with me. Speaking of Jennifer, as has become our tradition, she, her husband and 2 boys will be going to the beach with us. It is so much fun with them there…..and now with the magic bullet…well, it is a little slice of heaven.

Please visit our CB friends, your visits are good medicine for all of us. We aren’t supposed to link anymore, but Kendrie from Ga, Julianna from Canada, and Cheyenne from tx are some of our very favorite sites. Go visit and spread some love.

Okay, we will see on the other side of our beach trip! Hug your kids.

We love you,
Cheryl and family

Thursday, June 2, 2005 10:25 AM CDT

My 13 year old is turning 14 in June. I have been hearing about this important event "ad nauseum" for weeks now. Since when did a simple birthday become a national day of celebration? Did I nuture this feeling of entitlement in him, when I hired Barney to come and perform at his second birthday? Or when on his 3rd birthday, he had so many presents to open, he opened them in shifts? Is this the pay-off for spoiling the crap out of them when they are cute little toddlers? YES! If I had it to do again, we would have simple family parties, a couple of gifts, that is all. I have definitely sent the wrong message somewhere. Every year. The party plans get more elaborate, the gift list longer and more expensive....I think he thinks we may buy him a car when he turns 16!!! Never!!
Because of the birthday pestering this year, we have a new rul...no parties after age 12. No asking the relatives for gifts.

It is a failure of our parenting that our children feel so entitled to all the "good things" in life. I am hoping, with our oldest anyway, that he will grow out of it. Our gravy train is running out of gravy!!
We are, finally, doing his family party tomorrow night.

Sunday, we head back to Atlanta for a week, Haley will see Dr Vogler (rheum) and Dr Romero (liver), and have lab...of course. Maybe we will find out if she has officially been put back on the lsit.

Overall, she is doing all right. As we wean the steroids, she has a lot more pain, but we are treating it with painkillers and it is manageable.
Where we can see the most progression is with her breathing. She becomes extremely short of breath with any exertion.

Dr Romero says liver disease is a hemodynamic disease, and this is to be expected. But it is sad to see her not wanting to even try and play anymore. She fills her days with writing and reading, the computer, and TV. Tonight her best friend from TN is spending the night at our house. We are going to make popcorn and watch Dr Doolittle.

Then on June 11th, we head for Jekyll Island and the BEACH!!!! Yea! I LOVE the beach...I want to live there. It is such a peaceful, relaxing place...I look forward to this week all year. I may even leave the computer at home :)

The down side is I won't see our dogs for 3 weeks! I miss them so much, it's crazy!

Thanks for coming by, as I have said before, we have very little traffic here since Caring Bridge changed it's linking rules. I think it is sad, we have less support when we need it the most. I hope the policy changes soon.
Julianna Banana's dad has some ideas, go to her site and lend your support. If you've never been, you are in for a treat, they are an amazing family.

Love and prayers,
Cheryl

Saturday, May 28, 2005 7:09 PM CDT

Sorry for the delay in updating. I have been busy trying to manage four kids, two dogs in two separate households in two different states….makes me tired just thinking about it. Thanks goodness for Grandmas!
Yesterday we saw the Hepatologist. He said her liver disease was “progressing”, and really accounts for most of her symptoms. Pain, fatigue, high heart rate, shortness of breath with any exertion, etc….
The good news is that means she should get a lot better with a transplant. She is not yet back on the list, but the wheels are in motion, and I expect that to happen soon.

We drove back to TN….I believe I could do that 300 miles in my sleep now. And it is great to be home. We are hoping to have some family fun these two weeks we are “home”. Then back to Atlanta for a week of doctor visits…then a week at the beach in Jekyll Island. I can’t wait!!!

In other news, we ALMOST sold our house last week, but then they chose the other one. Oh well.
And Haley is learning French. She can say “I am tired”, “My feet hurt”, and “My dad is a doctor”…hmmmmm
Although on the bright side, even though overall she is having more pain…today is a good day…and we will take that!!

I know this is the world’s shortest update….but I am so busy these days….thanks for all your encouraging words, I am at a much better place this week !

Thanks for stopping by,
Cheryl

Thursday, May 19, 2005 10:18 AM CDT

I have a confession to make. I just, for the first time in my life, watched an entire episode of “Matlock”. Okay, that is not really the confession part. The confession part is…shhh…I liked it!! I have spent 10 years making fun of people who watch “Matlock”. Mostly my mom, but some other people also.
Now, HOW could I possibly have enjoyed this show…let’s think about that…. Could I
A) Be drinking in the morning?
B) Be getting old?
C) Have incredibly bad taste?
D) Be severely depressed? OR
E) Have such a bad stomach bug that anything that doesn’t involve me running to the bathroom is extremely enjoyable?

The answer is ….drum roll please…..”E”….Yep, that’s right…..Haley’s “car sickness” yesterday apparently followed me home, snuck into bed with me last night, and woke me up with a bang this morning.

I even cancelled her appt with her Hepatologist this morning, something I have NEVER done in the 3 and ½ years we have known him.

Well, our crazy roller coaster of a life has continued since I last updated. We went back and visited TN for a few days that turned into a week. I crawled into bed the first day back with a migraine, and had a little meltdown…meaning I did not get out of bed for 3 days. I just couldn’t. I couldn’t get up, I couldn’t shower. I couldn’t eat. I brushed my teeth and used the bathroom and watched hours and HOURS of mind numbing TV while my mother cooked and begged me to eat and Bruce took care of the kids. So, I am now taking 2 antidepressants (that is what 3 days in bed will get you!!), and feeling much better.

We are back in Atlanta now, Haley, Logan, Kendall, and I.
Bruce and Nick are in TN...They will drive up Friday for us to spend the weekend together.
Haley is singing at a GTF event on Saturday.

Haley’s health remains the same. Her newest symptom is she is always cold. I think the shunting in her liver is causing poor circulation. Her body has to work so hard to just do its normal functions. Our new appt is set for Monday, so I may know if she is back on the list then.
She was cheered up immensely, after a truly rotten drive home, by a special box waiting for her, from her lupus buddy Sara. If you haven’t visited Sara’s site, it is a treat. Not only is she one of the sweetest people I know, she is FUNNY!!!! Thanks Sara!

We get a lot less traffic here since Caring Bridge changed its rules. It makes me a little sad, as I feel a little disconnected from my CB family, but it makes me grateful for those of you who make the effort to visit and continue to support us. Boy, do we need it!!

Hugs,
Cheryl

Thursday, May 5, 2005 2:34 PM CDT
Sometimes I don’t know whether to laugh or spank her. Since it is politically incorrect to spank a child with end-stage liver disease, and since we really don’t spank our kids anyway…I am laughing myself to the loony bin.

ME: My neck and shoulder are killing me. I must have pulled something.

Sassy, yet unpunished, 11 year old: Welcome to MY world!

ME: I think I am going to welcome myself to some pain meds.

HER: That’s it mom, don’t try to deal with it…go straight for the drugs.

Okay…I admit it. I am a wimp. She is WAY tougher than me, but does she have to KNOW that already??

Sometimes, I wish I lived in the animal world. A world where you are just always “in the moment”, never dreaming about what used to be, or dreading where life may take you.
Of course, I would need to be a pampered house pet, being hand fed potato chips in my comfy doggie bed, with someone readily available to scratch my back, or to let me cover their faces in kisses.

I am cutting her extra slack this week, as she has been feeling especially puny. We saw her hepatologist today. He, as always, was so kind, and spent a lot of extra time with us. No small feat, as he double-booked himself to see her today.

He took a lot of time explaining the PELD/MELD scoring system to me. This is a system where you put in a couple of lab values, and bingo…you have your place on the waiting list for liver transplant. He explained why it worked so well for the vast majority of patients, and why it DIDN’T work nearly as well for our daughter. He also said getting her “exception” points would probably fail, as everything with Haley is “theory”, and the panel who decides this wants “facts”. Unfortunately, when your case is one in a billion, facts are hard to come by.

But, he IS ready to discuss re listing her with the transplant surgeon. He said he needs a letter from the neurosurgeon clearing her, but that won’t be a problem. Her MELD score would be an 8 if they listed her today.

We also found some research that showed the C3/C4 labs (her “lupus” numbers), that we have been trying to get into remission for so long, may be abnormal due to cirrhosis of the liver, so he has agreed to stop chasing these numbers, and we lowered her prednisone to 15mg a day. Of course, we added Prograf last week, so she is still quite immunosuppressed.

Her labs of interest this week:
AST 44
ALT 54
GGT 73
T. bili 1.7
Alb 3.0
INR 0.9
Tac 11.1
Plt 153

Not bad numbers, not reflecting how bad she feels.

He wrote us a script for Ultram, as we were using the Lortab twice a day, and I wanted to try something less addictive. So, we will see. It is hard to see her hurt so much, and be so tired. That is her MAIN complaint. I hear it 20 times a day “I am so tired”, or “Why am I so tired all the time?” Poor baby. Wish I could take it all away.

Tonight there is a Braves game with a pre game event for all the transplant kids. They get to eat dinner with a few players, and parade around the field before the game starts. We had planned to go, but Haley feels too sick…so we will watch on TV. And cheer on the Braves, while straining for a glimpse of any familiar faces of our “liver kids” in the crowd.

I will close by telling you all to sign our guestbook, if there is moment in your day, you would be amazed at how a few words lift our spirits. And I encourage you to go visit our friend, Kendrie, her mom’s entries make me smile, and laugh out loud, even on my worst days!! Go visit; tell her Haley’s mom sent you.

Thank you for your prayers, please pray for our mental strength right now, as we have to make tough decisions, and we still struggle with being physically separated as a family. When we need each other most, we are so far apart. Please pray that our house sells, as I think we could have more normalcy when that happens. Please pray that Haley would be without pain, and able to rest and sleep at night.

Believing,
Cheryl

Sunday, May 1, 2005 2:04 PM CDT
A short update for now…I figure it is better than nothing, and we have been silent here for awhile now.

I have good news and bad news…..I’ll start with the bad news, so I can end on a happier note.
We came back to TN on Thursday, and Haley has been SICK ever since. Endless sleeping, terrible nausea, some vomiting, and a cough keeping her up. We were up and down until 4am last night. I am thinking about cutting our visit short, and getting her back to Atlanta to see her doctors…but, of course I am hoping this is just a “bug”.
Although, even just a bug in someone as immunosuppressed as she is, can be dangerous.
Speaking of immunosuppression, they added Prograf back to her arsenal of drugs to try and get her lupus numbers under better control.
So, for the moment we are just watching her…we could end up in the ER today, or at the doctors tomorrow.
Our whole family is feeling the stress of living this awful roller coaster. I can barely find the energy to get dressed these days…I just want my life back!!!

Our dear friend Aiden is suffering from an aggressive and stubborn bout of rejection. They have been in Atlanta 2 weeks now, with no real end in sight. Aiden’s mom is pregnant with Baby #2 and is feeling under the weather much of the time. This family is so very special to us. Please say some extra prayers for them today.

So on to the good news…
HALEY ROCKS ATLANTA!!!!

Two major events…..the picture above is of our much loved Dr Romero (Haley’s liver doctor) introducing Haley before she sang “The Dirty Rotten Liver Blues” at an ALF fundraiser. He did an amazing job, and his words moved me to tears.

Then, Haley sang The National Anthem at Turner Field for the Ga-Ga Tech baseball game. She did a great job, especially for not getting a chance to practice at the field at all. I think the echo of the microphone threw her a little at first, but she recovered and did a WONDERFUL job. I am so proud of her. She is so willing to share her gifts and talents to touch people and educate them about children living with chronic illness.

Please pray for us right now, we all really need it.
Hanging on,
Cheryl

Tuesday, April 19, 2005 10:38 AM CDT
Today is a special day…it is Aiden’s 3rd birthday!!!!!
Go give him a big “Happy Birthday” wish!

As far as life here, we are gearing up for the big “Flavors of Atlanta” event that Haley will be performing at. Ooh, I just ended that sentence with a preposition….another reason I should NOT be homeschooling !!!!

Speaking of homeschooling, I am looking for a nice area, not far from Egleston (within 30-45mins) where we can rent a house, and enroll the kids in public schools. We have looked into private schools, and they are WAY expensive, for 3 kids. (Haley will continue homebound instruction).
If anyone out there has an idea of the areas we should be looking into, please email me, or leave it in the guestbook.

Back to the “Flavors” event. We are SO excited for Haley to be given this opportunity to sing there again this year. And this year, her hepatologist (whom she ADORES) will be introducing her. I will definitely be bringing Kleenex, and taking pictures!

And next week, April 26th, is the GA-GA Tech game where she will be singing the National Anthem…..at Turner Field!! The tickets are general admission, so let us know if you are coming, we can all sit together.

Last week, Haley was on the news….but they forgot to call us, and we MISSED IT!!!!! I was so disappointed, but the PR person at the hospital promised to get us a copy of the broadcast. So, we STILL haven’t seen it!

So, life here is pretty much the same. Haley’s lupus #’s still completely suck…and it makes me so ANGRY!!! We have tried everything, and this stupid disease just won’t respond!! She can’t stay on this high dose of prednisone forever, and it isn’t really working anyway, just making her puffy and miserable. This disease has robbed her of SO MUCH…even the way she would normally look. It just frustrates the crap out of me, and makes me mad.

Well, I am off to get “mystically” tanned…..maybe not being so white will raise my spirits a bit….. (PS Before I get emails about the dangers of tanning booths, this is a spray on tan…not quite as natural, but much safer)

Thanks for checking on us….and thanks for your prayers, we feel them.
Cheryl

Monday, April 11, 2005 6:17 PM CDT
It has been FOREVER since I updated. Usually that means nothing is going on…..and this is no exception!!
Of course, we are super busy just being us…but nothing medically horrible going on. Whew!!
Unless you count the parvovirus that Logan and Haley both have. Haley DID have to have her throat swabbed. An event that, in her world, ranks somewhere between being run over by a car, and oh, I don’t know….being publicly executed maybe.
And, when I try to point out that she is possibly….just POSSIBLY over reacting a tad, she hits me with the “Well, you are not the one getting your tonsils BEAT”. Hmmm
I was there, and I really don’t think anyone was actually BEATING her tonsils. But, I could have looked away for a second, or, you know…blinked.
Anyway, one tonsil beating and an antibiotic later, we were on our way..

So, we were able to spend last week in TN. So nice to be “home”, although I feel a bit like a visitor in my own house these days….not sure where “home” is anymore.

We left right after Haley sang at the Donor’s Day event. She was, of course, a big hit.

In fact, the TV news crew covering the event were so taken with Miss Haley, that she will be on the news herself this Wed. evening. I am just hoping my part is minimal.
They are going to interview her GI doctor, then film her getting her lab work, and lastly she will give a little mini concert to some of the patients. I am not positive the network, but I THINK it is CBS…for those of you in viewing distance, I will try to add a mini update Wed morning with details.

I am actually quite thrilled that we are being given the opportunity to educate the public, in some small way about pediatric liver disease, and of course, organ donation. Most people don’t think children get cirrhosis. I was a little surprised myself.

I know this is short…sorry, but I have to run..

Thanks for checking in,
Cheryl

Wednesday, March 30, 2005 8:54 AM CST
EXCITING NEWS!!!!!!

April is National Organ Donor Awareness month, and Miss Haley is singing at several big events!
April 4th: Donors Day at the capital, for the Governor and First Lady of Georgia, she will be singing “The Dirty Rotten Liver Blues”.
April20th The Flavors of Atlanta event. Haley sang at this last year, and has been asked to sing again. This is the biggest fundraiser of the year for the Georgia Chapter of the ALF.
April 26th TURNER FIELD!!!!! Yes, Haley has been invited to sing the National Anthem for the Georgia – Georgia Tech baseball game, at Turner Field. Tickets will be available at the door.
And one more bit of exciting news….
Through the extreme kindness of one man, Haley’s situation was brought to the attention of our President. Haley received a signed letter from President Bush commenting her on her courage and strength!! Thank you to the person who took the time to thrill a little girl (and her family!). And many thanks to our President, for caring…..

One of the reasons I haven’t updated for awhile is we have been so very busy…….

Our friends came to Atlanta to finish recording Haley’s new songs. The Cd’s are in “production” now, I have a poorly run sweat shop working amidst groans about child labor laws…but they are coming along.
The CD’s now have 6 songs on them!! The down side is they take longer to “burn”, so production has been a bit slow. I can also use only one type of label, that proves to be quite elusive at times…last night I had to order from the company, so I went ahead and ordered 400.

Our doctor appt last week was fairly uneventful. Haley’s labs are all a little worse, but only by a little…not enough to do anything. It means we could not wean her prednisone any this week. She gets more labs today. She has been feeling pretty well.

Yesterday, we went to the zoo. The last time I went to the zoo was 3 years ago. I said then, I would NEVER go back. I am not a zoo person. Too hot, Too crowded. Too smelly. And that is just in the car getting there.
But, we had the opportunity to meet a family there, we like very much and I am old enough that 3 years dulls the memories.
When we arrived, the parking lot was already full (first clue how crowded it was going to be), but we have a handicapped sticker, so we zoomed right in.
We were starved (TIP: Always bring food from home, or eat before you come), and I waited 45 minutes in line for a lukewarm breaded hotdog nugget and a coke. Totally delicious.
I had a lot of time to think while standing in that line, and I compiled the following lists:

What I hate about the zoo
1. The heat, or the cold..depending on which season I have decided to come. I have never come to the zoo where I didn’t have to buy clothing….last time it was sweatshirts, this time shorts.
2. The crowds. 45 minutes in line for mediocre fast food is enough to make anyone a little crabby.
3. Being corrected by my 11 year old daughter.
Me : There are the rhinoceroses
She: Uh…I think the plural is Rhinoceri

4. Public restrooms that look like the animals have been using them.
5. Petting Zoos. I have always thought this was a little gross…now I KNOW we will be avoiding them.
6. The animals that are so good at hiding you can’t even get a glimpse of them.

What I love about the zoo

1. The Panda Bears are so cool.
2. Giraffes.
3. Watching my kids having so much fun!
4. The air conditioned gift shop.

Well, the sad news is we never met up with our friends! They were there, and we were there…and in my mind we just kept passing each other! She had forgotten my number, and I didn’t have hers…… Oh well, at least the kids had fun…and I got a pretty cool panda hat….

Love always,
Cheryl

Friday, March 18, 2005 2:38 PM CST
I am a good mother in many ways. Strict even. I have adopted a “tough love, no nonsense” approach with my kids….and for the most part, they have responded to this type of parenting and given us very few problems.
Never mind that we are considering military school for our oldest…that is a fluke.…..

I do find myself lacking in the “TV watching” area of parenting. There is a lot of trash on TV these days.
And I know that because I watch ALL of it, usually with a small child snuggled under each arm.
I have found myself wondering lately where I lost control with the TV.
I never used to let them watch anything except PBS. No MTV, No comedy channel, no Simpson’s even.

I think it all changed with “Fear Factor”. Yes, that was the first trashy show that we dubbed ‘family entertainment’ and watched together.
Nothing like watching someone wolf down a plate of Buffalo testicles to bring the family together, I always say.
Do you remember when the contestants on “fear Factor” had to parade down a runway naked? My 9 year old son was disappointed because they blurred out the naked parts!!!
Well, it is a small step from “Fear Factor” to “The Bachelor” What is up with that show? I am making out with one man tonight, and asking a different one to marry me tomorrow??…

and my personal low point as a TV monitor/parent “Reno 911” I believe I just heard several of you gasp out loud. Yes, “Reno 911”. I admit it. My kids have seen it. I have laughed out loud at it. And it is pure trash.

So, here is where I could get really philosophical about this…..Is this TV stuff about escapism?
Or have I allowed my children these more adult decisions about TV watching because life has thrown them so many adult problems and situations already? I don’t know.
My guess is I am taking the path of least resistance in this area.

Onto our week, and all things medical….
Monday…..

We saw the neurosurgeon. I love surgeons. They are simplistic and direct. You have a problem…cut it out.
You are awake…I don’t really want to see you anymore.
I told him that our transplant team wanted him to be a part of the decision about when to re-list her for transplant.
He said…”Do it now, if she had a good liver, she probably would never have bled like that”
Not even a seconds thought to the myriad of underlying problems…just go in and fix it!! Of course, it was refreshing and even a little amusing, but I don’t think our team will find it too helpful.
We are doing one more head CT, as she has been having some mild headaches.

Tuesday…..

We saw the Rheumatologist (Lupus Doc). I told him what the neurosurgeon said, he laughed out loud.
He said, it doesn’t matter because the “team” gets 3 votes to their every 1 vote anyway, so guess who decides? And that is how it should be.

At his office, Haley’s BP was up. Probably due to high dose of prednisone. So, we need to monitor that at home now.
She is also still having “lung” symptoms and breathing issues, so we are going to be getting some pulmonary function tests next week.

Wednesday…

Labs today. We dropped off a copy of “Aiden’s Song” with one of our very favorite Child Life people. Soon, they will be ready for general distribution. I want to wait until “Prednisone” is ready as well, so I only have to re-do the labels once. We are supposed to record that one 3/25…so soon….

Thursday…..

I showed up for my appt with the Hepatologist only to discover I was on their schedule for NEXT week.
Now I know he told me 2 weeks…and this was 2 weeks…but it was still my fault for not checking the paper they gave me….oh well…

We headed up to the hospital to visit some friends here for an IV infusion, and who should we run into, but the hepatologist!!
Right there in the hallway. 6 feet away from his office..who would have thought?
So, after wrestling him to the ground, we were able to have a “hallway” appt. He actually was kind enough to go print out Haley’s labs, go over them all with me, change her meds, do all that doctor stuff right there is the hallway.
So, her labs…some things better (platelets), some things worse (complements, liver #’s), but that is our Haley, never makes things easy.

He went up more on her CellCept, we are now at a max dose, and down some on her prednisone, now at 20mg a day.

And she is now using a Ventolin inhaler…which actually seems to be helping some….hmmm…..asthma?? That is all we need….

The “port” placement is still a go…we are just waiting on scheduling between the surgeon and the dentist.

Friday….

Nothing medical!! Hallelujah!

Did that update remind anyone else of that Shaun Cassidy song “Met her on a Monday and my heart stood still..Dadorunrunrun Dadorunrun..” Or is my age showing??

Lastly, I am sure most of you CB folks know that we are going to be prevented from linking pages from now on…so please bookmark Haley’s page. We don’t want to lose any of our friends who come here from other sites.
We need all the support we can get!

Please continue to pray for us, and all of the caringbridge kids.

Much love,
Cheryl

Friday, March 11, 2005 10:21 PM CST
I am under strict orders to not include anything medical in this update.
That will actually be easy, because I just wanted to write a short entry about Haley's benefit concert tonight.
It was SO amazing!!! I am so so SO glad we were able to be here in TN for it.
"Law and Grace" were awesome. They were funny, and unbelievably talented. What a wonderful group of men to donate their evening and energies to Haley's cause.
So many other people came out to work and help also. It was so overwhelming. I am in awe of the love and friendship that is shown to our family continually.
And Haley....well, she ROCKED!!! I have truly never heard her do those songs any better...and other people said the same thing. She was just "on her game" tonight.

She has been asked by the GA transplant Foundation to sing at "Donor's Day" at the capital. I think we will get to meet the governor, so that should be cool. Or maybe I should say...the governor may get to meet Haley!!

Tomorrow we are planning to record 2 more songs for Haley's CD..."Hots", and "Prednisone". I am hoping we can get them done while we are here in TN.

Haley is feeling well, and we are enjoying our "break" from all things medical. We will re enter the real world when we return to Atlanta on Sunday....we see 3 different doctors next week..plus labs...sigh...

But for today, we are home, we are together, and thanks to many people, we are feeling quite loved!!

We have alot of leftover items for sale. We have Tshirts, candles, ribbon magnets (for cars), arm bracelets (reminderbands), and CD's. The magnets and bracelets are personalized with Hope for Haley on them)The ribbons also say Donate Life.
If anyone is interested, wants a desription or price list, feel free to email me.

Hugs!!
Cheryl

Monday, March 7, 2005 8:14 PM CST
It has been awhile since I have updated. I had a little computer mishap involving a Corgi and a Coke. Enough said. So I have to use the kids computer temporarily.

We are going back to TN for a few days!! I am extremely nervous about it, but Haley’s labs have been stable and we would like to be there for her benefit concert on Friday night. I think we may be driving into a snowstorm tomorrow though…. We will leave tomorrow when Logan gets out of school. Did I mention Logan is here (Atlanta) now and going to school? He is adjusting really well. No surprise there, he is the most adaptable kid.

Haley is seeing a dentist tomorrow about putting a crown on a tooth that came in with no enamel. We are going to try and have it put on at the same time as her port is put in. Yes, we decided to go with the port. Thanks to all the moms who emailed me and answered my thousands of “port” questions. What would I do without you??
Her doctor also seemed to think this would be the best since we want it to last for more than a year, and I want her to be able to bathe and swim…plus I think it not showing will make her less self conscious, so I am happy with the decision.

Not too much new to report…next week are all the doctor appts…neurosurgery, hematology, and hepatology. Still on an outrageously high dose of prednisone at 30 mgs a day. Hopefully, we will start weaning it soon.

Haley made a friend here at our apartment..a really sweet girl who comes over and plays…talk about an answered prayer!!!!

As always, thanks for checking on us!
We love you guys!
Keep praying!!
Cheryl

Tuesday, March 1, 2005 11:51 PM CST
Well, as my husband would say, (usually right before I punch him really hard), no answer is better than a bad answer. And we know that Haley does NOT have hepato pulmonary syndrome. So, that is great news. We needed (SHE needed) a break!!

It wasn’t as unpleasant a test as I had feared, although it took multiple tries and almost 2 hours to start the IV. Her poor veins are completely fried.

She was a trooper, and I was, of course, promising her pretty much anything she wanted when it was over (I think a pony was mentioned sometime between the 2nd and 3rd sticks), and then she said the saddest thing. She said, “All I really want is someone my own age to play with.” Just out of the blue. It makes me so sad I can’t give her the one thing she wants most. Normalcy.
But, we don't know why she is hypoxic...although tonight her O2 sats were better. She is going to see a pulmonologist and have ABG's drawn as the next step. Our circle of doctors did not yet include a pulmonologist, so I am pretty sure he was feeling left out. :)

A funny story...Lisa (Aiden’s mom..click on his link above) was here when the pulse ox arrived, and she all but gushed "You are SO lucky to have that!" I was like "LUCKY?!...In what warped universe are you lucky to have a pulse ox federal expressed to you for your daughter??!!" Goes to show how twisted we have become..:)...We have had fun playing with it though...we know everyone's O2 sat...including a few neighbors....just kidding….it was only one neighbor…..no, I am kidding, it was ONLY the postman:)

So, because this pulmonary stuff seems to be turning out okay, something else needs to be going suck-y. That is just the way it is around here. So here it is. The labs aren’t great. Platelets are falling, down to 99 (127 last week), and lupus labs are about 20 points worse than last weeks. I would post those numbers, but unless you are a rheumatologist or a lupus patient, they won’t mean much. I believe they want to increase her prednisone more (she is on 20mg a day now), I emailed her doctor and asked about doing short term IV steroids instead, and maybe giving her a central line. As I said before, her veins are shot.

It worries me to no end. She is nowhere near achieving chemical remission from lupus, and they say we have to wait 6 months from the time she is considered in remission to transplant her. So, we will see the doctor on Thursday…I bet he is thrilled we are here full time now :)

On a happier note, some AMAZING angel sent Haley a karaoke machine. It could not have come on a better day. She sang on that thing for 2 hours tonight.And Aiden sang along too. I have some precious pictures of them singing, I will get posted soon.
It came with a starter disc (234 songs!) and a Shania Twain disc. Haley went nuts!! What a lovely, thoughtful gift. I cannot thank you enough for brightening my baby girls day.

Keep praying!
We love you guys,
Cheryl

Thursday, February 24, 2005 10:14 PM CST
I am a naïve, stupid woman.
Or maybe I am not. I will find out for sure on Tuesday. What happens Tuesday you ask? No, not a stupidity test, a bubble echo.
Pay close attention…. For the last 2, maybe 3 days, Haley has been complaining of chest pain and a feeling of over fullness along with air hunger after eating. Only after eating. So, naturally I assume she has some reflux or possibly a gallbladder issue. She does have liver disease after all, and is on a high dose of prednisone….seems like a safe assumption. Right?? WRONG!! This is where the stupid part comes in. This is Haley we are talking about. I, of all people should know that. I let myself be lulled into a sense of complacency, that we could leave with a normal diagnosis, and maybe a prescription for prevacid. HA!
I emailed her doctor with the above symptoms, and because he, unlike me, is a smart man, and has caught on to Haley’s tricks had us come in right away. He right away checked her O2 sat, which was 94%. That is too low. It should be close to 100%.
Anyway, to make a long, painful story short…he is suspicious she has something called “hepatopulmonary syndrome”. I would love to tell you exactly what that is, but I haven’t had time to research it too much yet. I do know it takes the guesswork out of transplant…you HAVE to have one…although he still seems to think she can wait the 6 months. He did mention she may have to be on O2 at home should her levels change.
It would also change her PELD score dramatically, once she was listed, she would be at the top of the list.
The other option is pulmonary hypertension. If her bubble echo is indicative of that, she will have to have a cardiac cath done.
Haley was very upset about all of it. I had her wait in the waiting room with her brother while I talked with the doctor, but not before she had burst into tears. She is so tired of all of this. So am I.

As for now, she is uncomfortable with the symptoms, and extremely anxious. Anytime it is hard to breathe….

We are anxiously waiting for Tuesday to have an answer.

Thanks for checking on us!!
Cheryl

Tuesday, February 22, 2005 4:16 PM CST
A Day on 40 mg of prednisone

Patient mother : "Sweetie, it's time for breakfast"

She who shall not be named: "Are you calling me fat?!"

Patient mother : "Let's go to the circus today!"

She who shall not be named "What, are you, like, four??"

Her hepatologist :"Yes, the steroids seem to be the only drug that is working for you"

My sweet litle girl, dripping with sarcasm, eyes rolling :"Perfect."

Extremely patient mother: "Honey, what do you want for lunch?"

Child on 40 mg of prednisone: "ARE YOU CALLING ME FAT??"

Exhausted mother who is unable to ever say the right thing: "Are you through eating?"

Reigning steroid queen: "What is that supposed to mean? Have YOU ever been on that much prednisone? Do you think I ate too much? Are you calling me a pig? I only had what everybody else did. Why are you picking on me? Why don't you love me? Do you think I am ugly? You think I am weird don't you? You wish I wasn't your kid, don't you. Well I am SORRY I am not NORMAL. I hate my life!!!!
Hey, you want to go to the circus!?

Crazed Mom: "Sure honey, I love you, let's go to the circus, We will get popcorn!"

Crazier daughter: "Are you calling me fat?"

Thursday, February 17, 2005 8:36 PM CST
It has been awhile since I have updated. It hasn’t been for a lack of things going on, although Miss Haley has managed to stay out of the hospital this week, it is more about my state of mind. I am trying very hard to stay positive and happy, but this stinks. Haley is actually coping much better than I am, and I am sure that surprises no one!! She is way tougher than me.
So, we are still in Atlanta….will be here for a Looooooooong time yet. She went to PT on Monday, and the therapists said they need to work on a couple of things. One, her heel cords have shortened from living with chronic joint pain for so long, and her strength is not where it should be. The good news is her therapist is super nice, and we can go to a satellite office near our apartment. So for right now, she will go to PT every Monday.
Wednesday she had labs done, and we started the process of getting her a homebound teacher.
Today she saw her hepatologist. Not a great meeting. For mom anyway. He said she would be inactive on the transplant list for at least 6 months!! SIX months!!!!! I was shocked. I had no idea it would be so long. And then he said a lot of other scary stuff that I am trying to put out of my mind.
I keep telling myself that doctors don’t give up on kids….that they will help her.
But my hope isn’t in the doctors anymore, if it ever was, it is so much bigger than they are.
We have so many people blanketing us in prayer that I rarely post specific requests, but I am going to tonight.
Please pray specifically
-that Haley’s liver functions remain stable until the time she can be re-listed
- that she can achieve chemical remission from lupus
- that her blood vessels remain strong, and she have NO more bleeds
- for discernment for Bruce and I regarding her medical decisions
- for her doctors, that they make the right decisions for our daughter

And for us…I only have a “wish list”..I wish for her an earthly healing….I wish she could go to school and ride her bike…..I wish I didn’t cry so much…..I wish I understood why bad things happen…..I wish I knew God’s plan….I wish I was with my whole family tonight

BUT…I have a thankful list too…I am thankful for God’s people….I am thankful for His promises….I am thankful for new friends here in Atlanta…I am thankful for our doctors who spend so much time trying to figure out the unthinkable…..I am thankful for hundreds of letters and gifts and HATS……I am thankful for a baseball signed by Tom Glavine and left at the hospital for us…….I am thankful for my “liver” and “CB” moms who “get it”, and for my friends in Kingsport who love me and hurt for me…..
My thankful list could go on and on…..

So, to end on a more positive note, I am trying to get the song “UP” by Shania Twain on Haley’s home page. If you are familiar with it, you will know it is PERFECT for her. It talks about how things can only get better from here.
I should get her to record it…..

Blessings!
Cheryl

Friday, February 11, 2005 7:31 PM CST
Well, we only got 2 good days out of the hospital, when Haley decided she missed it there. She suddenly spiked a temp of 103.6, and broke out in a horrendous rash. Haley ALWAYS has a rash, so this is saying something.
9 short hours later, we were in a room, admitted once again. I won’t bore you with the details, but the end result was she had a drug reaction to the Dilantin the neurosurgeons had started her on after surgery.
So, after 2 days of IV steroids, and a new whopping daily oral dose, we are back in our temporary Atlanta home.
Haley says 3 admissions in 2 weeks is too many!!
She did get her stitches out while there, and her head is much less sore…she is able to start wearing her hats now. And boy does she have some hats!! One for every outfit.
Haley has gotten so much mail that both the hospital courier, and the postman here have commented on it. We are truly blessed.
I wish I could thank each and every one of you in person, but since Haley has received literally hundreds of cards and gifts, it is impossible. But, please know we cherish each and every one of them. It has made Haley (and her mommy) feel so loved.
When Haley first became ill, I was so out of my head I didn’t even know what to pray for. My one constant prayer (that I am sure God laid on my heart) was for Him to surround us with His people to encourage and support us on this journey. He has so faithfully answered this prayer.
We love you all.
Cheryl

Sunday, February 6, 2005 1:01 AM CST
This is Cheryl, Haley's mom. I have been trying to come and write a complete update, but it is so much harder than I imagined. And I knew it would be hard. I have stopped and started a few times, just getting the thoughts in my head about what to write will reduce me to a blubbering idiot in about 10 seconds.

It is hard to believe that the last update I wrote, before Lisa took over, was about my HAIR!!! I am, by turns, ashamed that I spent even a second worrying about something so unimportant, and envious that I was ABLE to worry about the mundane things. And to give closure to the topic...I am going to cut it very short, and Haley and I are going to grow back our hair together.
It will be our new hobby.

So, what happened...
Haley had her iron infusion last Thursday. The doctors discharged us Friday, telling us to hurry and get home, there was a big ice storm coming. So, we stopped by Publix to buy enough junk food and magazines to just hibernate for the weekend. Haley was in a great mood, she said we would just stay in our pajamas all weekend, eat ad sleep and watch TV. Which is exactly what we were doing.
About 10pm, she came to me complaining of a headache. I am having a hard time remembering exactly what she said, or how I knew it was so serious. I called Bruce, and then I called her GI doctor here in Atlanta. The doctor wasn't on call, but the resident said to bring her in. I was already dressed and ready by then. Somehow I just knew.
We hurried out to the car; in fact one of Haley's last memories is of slipping on the ice, and bumping her leg. We found the car covered in about an inch of solidly frozen ice. The doors were frozen shut, and the windshield was encased in ice. At this point, I should have called 911, but I was in frantic mommy mode. I started beating at the doors, finally getting one open enough for us to get in, I beat at the windshield with anything I could get my hands on..my shoes were the worst, hitting the ice with clogs...very ineffective. My curling iron worked fair, and I can still see the black bits of plastic flying off of it as I pounded the window. I managed to make a hole big enough to see out of, and I drove to the nearest restaurant parking lot, where there were people. Very few people were out as we were in the middle of a terrible ice storm. But I found a couple, and I begged them to help me. They spoke no English, but the universal language of hysterical mother seemed to do the trick, and soon everyone was beating on my windshield. In just a few minutes, I could see well enough to drive.
By this time, Haley was vomiting in the back seat, and barely responsive to me. She had pulled a blanket over her head, and I would occasionally scream at her to say something to me. I was afraid she was going to stop breathing. Thankfully, she usually would respond with a whine or enough noise that I knew she was breathing. I ran every red light, praying a cop would actually notice (never did see one), and pulled into the parking garage at Egleston. I ran into the ER saying I needed help with my daughter. Now, I have seen this on ER, they come running with the gurney and help you. Apparently this lady doesn't watch that show, because she said NO!!! So, I run back to the car, and half carry, half drag her into the ER. By now she has lost her shoes, and somehow taken off her pants. She is covered in vomit. We also now had their attention, and the ER episode action started.
She had stopped responding to any commands, only to painful stimuli. Within a few minutes, a critical care doctor from PICU came down to the ER, and never left her side. A CT scan was done within minutes, and showed a massive epidural bleed, with a midline brain shift. The entire right side of her brain was filled with blood. An epidural bleed is the worst kind, because it involves an artery, rather than a vein, and the blood will just pour out. It is almost always associated with significant trauma to the head. There is a very short window of time to treat without devastating outcomes.
As soon as we got back to the ER, the PICU doctor intubated her, I signed consent forms, and she was whisked away to surgery. The neurosurgeon told me if there was significant swelling of the brain, they would take the piece of skull they removed and sew it up in her abdomen "for safekeeping" until they were able to replace it back on her head.
He also told me there could be permanent brain damage already. The surgery lasted an hour and 3o mins, the neurosurgeon came back out and said something to the effect of "I hope she didn't have a stroke". By this time, I was completely numb, standing in the deserted waiting room, with tears falling.
I went up to the PICU, and Bruce arrived about an hour later...I think it was around 5 am by then.
The rest of the PICU days are a bit of a blur to me. I spent a lot of time sitting in the big blue chair crying...even as she woke up and became more herself, I was so devastated this had happened to her. I was so tired of seeing my child suffer.
As she became more aware, I had to slowly give her the details about what had happened. She was crushed...I had never seen her so depressed. She told me she was tired of the fight...that she never got any better...she cried endlessly, and said over and over "I am just too weak". She couldn't believe half her head was shaved. At one point she said, "God must really hate me." I felt like telling her, No, it is ME he really hates!! But, of course I know he loves us both...in fact I know that God loves her even more than I do.
We spent 4 days in PICU, and finally came to the floor on Wed. Thankfully, coming out of the unit seemed to help her spirits immensely, and I have watched her get her fighting spirit and sense of humor back. Just yesterday, one of her doctors was talking to us about her possibly losing her sense of touch if another bleed occurred in her spine...she looked at him and said "As long as it's not my fashion sense" She also said this morning " hospital tip: Never let a neurosurgeon cut your hair!!"(It is shaved on one side, shaggy on the other.
What a remarkable kid this girl is. I requested the child psychologist come and see her. Haley spent the time with her telling her all about what her wedding will be like one day, and also telling her she had an idea how to best use all these hats she is getting. She wants to start a web site (Haley's hats of Hope), and let children email her with their favorite colors, styles, interests etc, and let her best suit them to a special hat and match it to that child. And mail it to them. Three minutes after suffering such a horrible thing, she is figuring out ways to make the experience of losing their hair easier for other children. God hating her?? Are you kidding me?? She has to be His favorite :)
After their visit, the psychologist set up weekly sessions for her, and told us Haley may be at high risk for non-compliance issues in the future. That is how bad she wants to be "normal". But, as I have said many times before, she is NOT normal, she is extraordinary, and I am so blessed to know her. She humbles me.
So, what happened? Good question. The docs have done a worldwide literature search and found 3 other cases of spontaneous epidural bleed in lupus patients. Not exactly a common thing. Our doctor told us Haley may very well be the *only* one to have ever presented in quite this fashion, as the others seemed to have more abnormal lab work beforehand. Haley's labs were somewhat off, but nothing to indicate something like this would happen. Sometimes I feel sorry for her doctors. They try so hard, and she continues to be an enigma.
The plan now is a simple one, more immunosuppression to keep the SLE under better control, stay within an hour to the hospital, and try to get her healthy enough to get back on the transplant list. (She has been placed on inactive status for now). Once she is healthy enough, we will pursue living related donor...we don't think she can wait on the list. Please pray hard for the perfect donor. Bruce will be worked up first, then me.
Tomorrow is Superbowl Sunday, and we are supposed to be discharged early. I feel like we are starting a new life. Haley and I in Atlanta, while everyone else is still in TN. The kids will come down every weekend, and Cara (our Corgi) is going to stay in Atlanta with us too. I am going to leave Lisa's words about our fundraising efforts. We now will have 2 households to support and new meds to buy. If anyone has any fundraising ideas, please let us know. We have a benefit concert planned for March in Kingsport, and we may be putting out a cookbook.

I cannot begin to thank the people who have rallied around us this last week. People have taken care of the other kids, made meals for them, called us, emailed us, sent Haley flowers, balloons, cards, gifts, many hats, all the guestbook entries...I could go on and on...it is completely overwhelming. Thank you, thank you....

Love and Hugs,
Cheryl

Friday, February 4, 2005 6:25 AM CST
I have spoken to Cheryl several times. Things are pretty much stable. Haley is making progress. Her lupus numbers are looking improved, and her liver is still the same (pretty good.) She is receiving Physical Therapy and Ocupational Therapy. Very dizzy is having a terrible time walking with that, and learnign everyday things again, like eating etc.. But doing very good.

Haley was playing Bingo last night, and enjoyed opening cards, and boxes she recieved. She also got a big balloon bouquet she loved that too! I think Haley's spirits have lifted a lot, but she is still needing many prayers. She does not understand why God keeps saving her and why she ever had to be so "special" to begin with. Cheryl is such a great mom, she is on top of these feelings and gettting her to talk to someone who knows the perfect way to listen. Haley's Hepatologist said that he could think of at least 100 reasons why Haley feels the way she does... it is OBVIOUSLY warranted, and probably expected. But I know very hard for Mommy and Daddy to watch.

Haley's siblings came to town to come see her. She said she needed her family. I just get chills when I think of how close they are and how much love they share. Haley is ALL about Hats now. She has a new idea she said that she wants to put on her website that she will send everyone who needs a hat a hat. They are making her feel THAT good. She loves it. I can't wait to send her the ones we all collected.

ON that note.. Haley will probably be inpatient until at least Monday. Waiting for the weekend. They will need to stay in Altanta until she gets her new liver. So that length of time is unknown. But it is just too dangerous to be far from her center as of now.

The reason for the bleed is still very up in the air. It is being bracketted under a vasculitis (spelling??) vein and artery disease. They believe it is linked to lupus, not liver. Although her elevated clotting times assisted in the extent of the massive bleed. So yet again she is an anomolie. SIGH....(note: this is just the theory as of now)

If you plan on sending any cards I think after today, send them to her P.O Box in TN. Or until I can get their Atlanta Address. I just wanted to continue to thank you for all the love you gave them. It is so amazing. **Haley's family is going to need to do some serious fundraising now. This was such an unexpected situation. And the writing is on the wall, there will be more unexpected situations rising possibly. SO I ask you if there is anyone that is looking for a tax deduction please note the ALF address listed above. Tell anyone that may own a company and anyone that just wants to give 5 or 10 dollars. It can really help with all the costs. Haley's family doesn't have perscription coverage, and now there is yet even MORE medications she is being perscribed. You all have been so wonderful to this family, and they are so thankful.

As a personal Aside: I think of this situation and the other things that I have seen since my son was diagnosed bout 2 1/2 years ago. I am just blown away. I can't help but ask, Is there anyone out there that doesn't belive in Miracles?? I say, Look at Haley and go to www.classkids.org ... this is the most amazing website and group of people and children I have ever seen. ALL miracles, all the time. Even in the angel's who pass to Heaven. They leave such a legacy. I am so blessed to have had my eyes opened. When Aiden was diagonsed I was changed. There has been heartache, but I am so thankful to God that I KNOW that this life exists. I feel like I can see angels in our kids, and miracles everywhere. It is a blessing in disguise. Thank You Haley for Showing me what the face of an angel looks like. You are a miracle on Earth. We love you.((HUGS))

~Love, Lisa

Wednesday, February 2, 2005 7:30 AM CST
Hi Spoke to Cheryl. Keep Haley in your continued prayers today. She is having some amonia issues. For those who do not know, Haley has had a hystery of encthlopathy. It was two years ago and very serious. They are watching her amonia levels very closely. She is, at times, not "making sense". She has been aggitated innapropriatly as well. She is very depressed and needs some prayers for her heart to be lifted.

They have had a logistical nightmare last night they moved them in the middle of the night to another ICU room, except this one has two (very loud) babies in it!! This was due to an emergency situation with a new ICU patient coming in, but still totally unacceptable for a child like Haley to be sharing a room. So Cheryl got about 45 minutes of sleep last night battling this, awaiting house managers to attend to her. Noting was done. We are thinking she will probably move to the floor today into a private room once again.

I think what I got the most out of the conversation was how depressed Haley is feeling. She feels like a burden. She doesn't feel like she has friends, or is normal. So please I encourage anyone who just has a minute today send a note to her in the mail. Here is Atlanta's addy:

Patient: Haley Vincent
1405 Clifton Road NE
Atlanta, Ga. 30322

So God bless, and thank you for the prayers and kind words. You guys are such an inspiration. ((HUGS))

Tuesday, February 1, 2005 12:40 AM CST
quick update:
Well just spoke very briefly with Cheryl, happy to say she was scarfing down a bite of lunch. Can't take care of Haley with out taking care of mommy. Haley is has an eventful morning. She is very irritable and in pain, as to be expected. They removed her jp drain from her head, cheryl said it was unbelievably long and wide, had to suture up her scalp. In doing so, Haley has discovered her shaved head. She wanted a mirror but Cheryl "couldn't find one". Giving her time to adjust to the idea first.

She is doing better speech wise, and they are taking out her arterial line and her foley cath. She may even go to the floor in the next day or so. The liver team has been milling around her ICU door. And Dr. Romero, her hepatologist will be covering her once moved to the floor.

Cheryl said once they get the results from the CT scan from this morning they will know more about her progress to the floor. Please continue your prayers, but a miracle has happened before our eyes. I am so THANKFUL to hear my dear friend on the phone, a small exhale, with her little girl back. XOXOX

Monday, January 31, 2005 8:11 PM CST
A miracle!
I am shaking.. trembling. The newest update. Haley has "woken up". She is not 100% but she IS talking!!! She was talking about TV, and memories an asking questions. She has been talking her to her Mommy and Daddy now for 1 hour.
Here is how we know we have our precious Haley back: Cheryl told her that she had a surgery on her brain. Haley then asked, "what part did they take out? Did they take out the part that writes the songs??"

I am just sitting here with tears streaming. NO HALEY They didn't take that part out. You sweet thing. Praise God!! Haley said she wanted to write a song about the "mean nurse that put her ng tube in". That is OUR SASSY HALEY!

****I do want to emphasize to keep praying.**** She is still not able to sit up. And do things she should. She is not healthy enough to leave the PICU. She is still weak. And most importantly they haven't figured out what caused this. So pray for more strength, but THANK GOD for this miracle. THANK GOD!!!!!!!!
~~Lisa

Monday, January 31, 2005 7:16 PM CST
Update:Baby steps my dear friends, baby steps. I was so encouraged to hear cheryl's voice. Haley is still not as responsive as the nueroligists would like, but here it is:

Cheryl says: "Haley what color is my shirt"
Haley stares... keeps staring... then mutters weakly: "Stand up"
Cheryl said she jumped up and..
Haley said: "green"

THAT IS MY HALEY GIRL!!! Of course smarter than anyone she knew it!! GREEN!! Oh I know it isn't sitting up and eating, but it was HALEY..I have tears of hope and thankfulness.

Here is the other part of the update. Yes, Dr. Romero was so amazing when he saw Haley. He went to her bed side and told her he loved her. There is a special bond between that Dr. and patient, I know he will do everything to get her well. We are so glad he is back.

She is officially Status 7 (inactive). She obviously needs to be a lot stronger than this for a new liver. There is no news how long that status 7 will last.

She has recieved 2 liters of blood, due to the massive bleeding. They are drawing serial amonia levels to try to keep any type of encethlopathy away. (totally can't spell that sorry) Her kidney functions and liver functions all look the same (good)-

they did a third CT scan it showed no more bleeding and very minimal if any more swelling. The nuerologists said an average healthy child would progress faster than Haley, but due to her many other complications this slow pace is almost expected. There is still NO idea what has caused this. Pray for wisdom there.

Pray tonight that Haley gets closer and closer to her sassy, intelligent, and wonderful self every day. Thank you so much. God Bless her doctors, nurses and everyone who is helping her progress.

God Bless~ Lisa (Aiden's mom)

Sunday, January 30, 2005 5:38 PM CST
PRAYERS FOR HALEY!!!!! (please read "past journal entries" to update yourself on Haley's condition. Haley had a massive bleed in her brain last night)

6:43 update
I just spoke to Cheryl. Haley is extabated. She is off the vent. The nueorolgists are concerned because she is not as responsive as she should be. Her brain bleed was massive. It caused what they call a "midline shift". Her whole brain was pushed over to one side. The second ct scan showed that it looked much improved although still abnormal.

Cheryl spoke in a soft voice, she and Bruce are switching places who sits at Haley's bedside. They are exhausted. A nurse came in and said they needed to do an ng tube and Haley fought. Although the motor skills and other things are inable to be determined she is conscious. The are praying for no mental deficit.

I have a new plea. (thanks Sharon for inspiring me) If you want to help I am going to do a hat/scarf drive for Haley. Please email me at Rolexh@aol.com if you are interested. Or just get you sassiest prettiest scarfs together and hats, so Haley has something to wear with pride. Her beautiful blonde hair was all shaven, and although it is a small price; it is something that will be a long reminder of this awful weekend. SO if you would just email me or send her the prettiest scarf and hat you can find. It can be a wonderful reminder of all the people rooting for her.

Haley is still very sick, but your prayers are working! Please continue to pray and lift this precious family. I will update again asap. Love to you.

here is the addy to the hospital:

Patient: Haley Vincent
1405 Clifton Road NE
Atlanta, GA 30322-1062

~Lisa

Sunday, January 30, 2005 12:00 AM CST
HALEY NEEDS OUR PRAYERS@!!!!!!!!!!!!!

Please read "past journal entries" for what is going on with Haley. She has had a bleed in her brain last night. I am updating as often as I can, so always check the past journals in case you miss an update. Thanks

1:00pm Sun
I just heard from Cheryl's mom. Haley is heavily sedated. They took her back for a second CT scan and she began to thrash around a lot. (OUR tough FIGHTER!) They think they bleeding has stopped on her brain but it is too soon to see if there is any damage. It is looking hopeful with the thrashing.

One side of her brain is slightly swollen and they have to wait and see if this is going to cause and long term damage. I know cheryl and Bruce have been up for alomst 48 hours with no sleep. Pray for strength, and for Haley to recover fully.

At this point they have ZERO idea what has caused this. They do not know what it was. All her labs are normal and look like they did they day before. Just keep praying! Haley is a very sick little girl and she needs to rest and get well. God bless this family.
~~LIsa

Sunday, January 30, 2005 8:26 AM CST
PRAY FOR HALEY!!!Haley had a serious bleed in her brain last night here is my newest update: (read previous journal entry for more info)

Sunday 9:32

Haley is out of surgery. Here is what I know:
1st thank you for the prayers. Cheryl is so thankful. I told her how people were drawn to the computer and she cried.

Haley had a very big bleed in her brain. So much they had to put a tube in her skull to pump the blood out. The shaved her whole head of hair. The stopped ALL meds. She is on ventilator. She IS moving all her extremities and responding to pain, although not appropriatly. The are concerned about a stroke. but she is not favoring one side, so that is good. They said her prognosis is unknown they just have to "wait and see". If they can they will wean her off the vent asap and then sedate her strongly from the pain.

Bruce DID arrive their at 5:00am. I know only through the Grace of God. The roads are covered in ice and closed from snow and bad weather.

She is inactive on the transplant list. They have a hunch that either her lupus has caused this or a medication. They really don't know. Haley's main doctor the one that knows her so well, is out of town. He is unaware (that we know of) of this situation. But at this point she needs her intesivists and nueorolgists.

Cheryl sounded strong but fragile. Your prayers are being heard and felt, keep them going.

Sunday, January 30, 2005 0:41 AM CST
URGENT PRAYERS NEEDED FOR HALEY!!!!!!!!!

With the saddest of hearts. Haley had a bleed in her brain this evening. She was playing with Cheryl, and the next minute she was sick. It is 1:30 in the morning, and I am praying others see this plea. All I know is that the bleed is causing so much pressure in her brain, that she is on a ventilator, and they prepping her for the OR (operating room) right now! There are a team of nuerologists getting ready to do surgery on her brain. IN the mean time Altanta is having a news worthy ice and snow storm and Haley's Daddy is driving in this to see his daughter. I beg you to please get on you knees and pray for our sweet Haley. Just stop what you are doing and pray to God to help heal her and get her well. She has already had two miracles before, God is able to do anything!!!

Pray for Haley to have healing, pray for cheryl to have strength, pray for Bruce to have saftey and the surgeons to have wisdom.

I will update as soon as I know anything.
~Lisa

Sunday, January 16, 2005 9:39 AM CST

I have decided to title this update
“A series of Unfortunate Events”

Friday evening, I started having some low grade fevers and joint pains. This has been going on for a couple of years. Test after test has determined that I “just do this”. My own theory is it is how my immune system reacts to even the smallest viruses and allergens, even things that don’t give me other symptoms…but I digress….

Friday evening was my best friend’s birthday party, and my attendance was mandatory…by me and by her too!!! So, I drugged up with a little Lortab and was off…a great time was had by all….minimal pain, and I acted out a mean mermaid during a heated game of Guesstures.

Well, by Saturday morning, I was having more pain, and possibly paying for my brief stints as both a mermaid and a crab, so more Lortab. I was home; Bruce was home…a hot bath, pain meds….just what the doctor ordered.

I was puttering around the house, cleaning our room, when my husband spotted my home highlighting kit on the kitchen counter.

Him: Want me to help you put these on?

Me: I have had a lot of drugs. Who are you?

Him: Come on, It will be fun, remember I helped before a couple of years ago, I did a good job.

Me: Okay, you are pretty cute. Nice butt.

So, because I could not stand long enough by the bathroom mirror, I sat in a chair, watching football, while my husband (highlighted) my hair. When he was done, I noticed two things right away.

First, the entire solution was gone; I usually use about 1/3 of it. Second, my hair had a lot more stuff on it than usual. Now in my normal state of mind, I like to think I would have immediately washed it out, but in my altered state, I thought, “hmm, let’s see what happens”. So, I left it on the usual 30 mins.

My first clue that something was terribly wrong was in trying to rinse it out…it would NOT come out of my hair. It had permanently bonded. I had become ONE with the highlight. It took about 30 minutes and several shampoos to get it all out. My second clue was the look of horror on Bruce’s face, He said, “oh honey….I got you really blonde.”
So, I looked myself. Here is what I saw. The entire crown of my head is bleached blonde, as is several spotty places, here and there. They have no rhyme or reason. I look like a cross between a soccer mom and a freaky biker chick.
So, my choices….buy a lot of leather, and get my tongue pierced, or try to get it fixed. So, I went to bed Saturday knowing I would be finding someone to try and fix this mess.

Sunday morning I wake up to my husband stroking my hair, instead of “good morning”, his first words to me are “I’m sorry”. Good Grief!! It must be worse than I thought. Then my husband says, “I am taking the boys to church…doesn’t even ask if I want to go…seems to know I wouldn’t want to be seen in public!!

I reluctantly go to the bathroom, and the shock is almost too much…..BLONDE…the mirror screams at me!!! If I keep this, I will have to have a defibrillator installed near every mirror.

So, as I type this, I look a fright, my joints still hurt, and I am torn between getting out and fixing this….or drugging up, putting a hat on, and watching my new TV all day.
Any advice friends??

Okay, enough about me….pretty inconsiderate of Miss Haley to be needing a liver transplant and taking away from the daily dramas of my life…..sorry Haley, but we both knew I would manage to make this about me…it is how I cope!!!!

PLUS, I was told recently, and not very nicely, that I did not need to write every private detail of Miss Haley’s life down for the whole world to see. She is growing up, and needs a little privacy!

So, I will hit our medical highlights. Two sort-of big things going on this week.

One, we are trying to get permission to fly to St Louis for Haley to sing at an ALF fundraiser 2/25-2/27. Never thought this would be a problem, but apparently we have to have an angel flight arranged willing to fly her back to Atlanta just in case… I should have followed Jennifer’s advice “It is easier to gain forgiveness, than permission”
Hopefully, that will still work out.

Second, Haley will be admitted on 1/27 for her iron infusion. I have big hopes that this will make her feel better. Other med changes…we stopped the 6mp, started CellCept, and are weaning prograf., down to 15mg of pred. She will need labs again Wednesday.

As a lot of you know, Haley has been featured at make a child smile this month; she has received hundreds of letters and gifts. It has been a beautiful blessing to watch unfold. They only feature 3 children each month. How hard would it be to mail out 3 cards or gifts a month to children with life threatening illnesses.
I have seen first hand how it can turn a bad day into a good one for Haley, and I have made a commitment to myself, that every month, I will mail out, at the least 3 cards. Please think about making this commitment too. Make a child smile

Please remember to check in and pray for my friends listed above; these families need daily prayer and encouragement.

Thanks for checking in on us, we read our guestbook every day, and love to see the names there, old and new.

We love you all, have a blessed week,
Cheryl

Saturday, January 8, 2005 3:31 PM CST
Okay, here’s the thing about New Year’s resolutions….Does anyone ever actually keep them? I have the same one every year…to exercise more. My New Year resolution, however, has evolved into a New Year tradition. Every January 1st, I exercise…rain or shine. And then I don’t do it again for the rest of the year. Maybe it is just me who was born without the self discipline gene.

Onto more important stuff…..Haley continues to do her good days/bad days dance. We are going to try the iron infusion, and we are hoping it gives her some energy. It is hard to see her so tired all the time. Not to mention grumpy. She is mad at me most of the time these days. I guess the 20 mg of prednisone doesn’t help either. Her prograf level was very high at 21, so we are making some changes…..more labs…different meds…it all kinds of runs together, and I won’t bore you with the details.

We are getting liver enzymes drawn on Monday, I think her eyes look a little yellow, but I have been known to imagine that in the past, so we will see.

Thanks for checking in,
Cheryl

Saturday, January 1, 2005 10:17 PM CST

Haley is featured for the month of January at Makeachildsmile Go check it out!!!

Happy New Year!!!!!

Haley and I spent the last week in Atlanta, our home away from home. Have I mentioned that I really hate that security gate outside our apartment? Yikes!! You would think the president lived there or something.

We saw our favorite doctor at clinic on Thursday. We talked a lot about her chronic anemia, and accompanying fatigue. . Right now she is on oral iron, which raises her Hgb to the 9’s, instead of the 8’s, gives her stomach cramps, and does nothing for the fatigue.
I can’t see just treating the numbers, if it doesn’t help her symptoms. So, the options are 1) blood transfusion every 2 to 3 months (I am the same blood type and can do direct donation) OR
2) IV iron infusion This would require a day and possibly overnight admission. I know absolutely nothing about IV iron, didn’t even know they did such a thing.
Now Bruce and I have differing opinions…he would favor the iron infusion, me the blood transfusion…..so we will research and decide after the next set of labs. It was a little funny, as I was talking to the doctor about these options, they must not have been sounding that great to Haley, because all of a sudden she chimes in with “The stomach cramps aren’t THAT bad”

Speaking of labs, her bili and PT are trending up, her albumin is trending down, so we are re-pelding her. She will be a 5 now, instead of a -1. I am not sure that re-pelding is a word. My husband accuses me of making verbs out of words that were never meant to be verbs. I called it verbalizing. Wait…that means talking…never mind.
Her platelets are recovering, they are 120, her hgb is 8.2. I haven’t heard back yet on her C3, C4 (lupus labs).

Last night, our phone rang late and I thought “How cool would that be for it to be “the call”, and Haley were to get her liver on the first day of the new year?” That is the first time I have ever felt anything but sheer terror thinking about getting that call. Maybe God is preparing us.

Not too much else going on here. Apparently a Category 4 hurricane hit the inside of my house while I was gone. I am hoping for some help from FEMA…maybe Molly Maids??

I have serious un-decorating to do, (also not a word, my all knowing husband has informed me) I love the putting up, but I so dread the taking down.

Okay, my sweet friends, I love you for taking time out of your busy day to check on us. Sign our guestbook, and let us know you were here.

Peace and Love,
Cheryl

Tuesday, December 21, 2004 6:40 PM CST
You get the daily updates ALL AT ONCE…you lucky dogs!! And speaking of lucky dogs…can you imagine how happy Cara and Kelly were to see us and vice versa??
But I digress...

DAY ONE
We took off from Tri cities at 8:10 PM, no delays, and uneventful flight. The pilot did mention Haley by name, which thrilled her, of course. We landed in Orlando at 9:50 PM, and were met by a lovely lady with a sign reading “Give Kids the World welcomes Haley Vincent”. Haley went running over to her and jumped up and down!! The lady escorted us to our rental car, a minivan, and we were off. We arrived at Give Kids the World a few minutes later, and checked into our villa.

The villa is very large, by hotel standards. It has 2 bedrooms and 2 bathrooms, a living room, kitchen with eat in area. A refrigerator, stove, and microwave. There were toys for the kids and basket of snacks for all of us. They were also nice enough to stock our fridge with sandwiches, knowing we had such a late flight.

We unpacked and went to bed.
On the medical front: Haley’s labs were re drawn and her platelets were 90, hgb 8.3, albumin 3.3, bili 1.5.

DAY TWO
We woke up and went to breakfast at the Gingerbread house. This is a cafeteria style restaurant that is free to the wish families. It is decorated with gingerbread people, thousands of dolls and toys, trains, and peppermint candies. The food is very good.
Bruce went to orientation and learned hoe everything worked, and got our tickets to the parks.
We met up with Ashlee and her family, and headed off to the Magic kingdom. It was really awesome. The “wish kids” wear special buttons and move to the front of every line, and aside from a few dirty looks from people, it was a really nice perk. Haley had a pretty rough day physically, her “fissuring” has spread to some places on her face, and coupled with a very cold un_Florida like wind, she had some pretty extreme pain. Even with 15mg of Lortab, she was miserable at times, and wanted to leave by about 4:30 PM. On our way out of the park, we got a call on our cell phone from our pedi. She had spoken to all the docs involved, and they want to temporarily increase Haley’s prednisone to 20mg a day. Yikes!!!!
I sent Bruce to Wal-Mart for some soft comfort food, and Vaseline…and we slathered up her face, and stayed in for the night. We got our Gingerbread house dinner as “take out”.

DAY THREE
Since Haley had such a rough day yesterday, she wanted to take it easy today, so we opted to stay “home”. We slept in and went to Burger King for lunch. Then, our good friends Lisa and Aiden came to visit, and we had a chance to really explore the village with them. What an amazing awesome place! It is so beautiful, and there is so much to do here. The kids stayed busy all day. We played mini golf, and we played in the arcade, Kendall and I especially loved the air hockey. All the games were free, of course. We also played ping pong and raced remote control boats.
By mid afternoon, Haley needed to rest, so Lisa and I tool the other kids to downtown Disney to shop. Major fun. I love Disney shopping!!!
We ate dinner at the Gingerbread house, and the kids rode the carousel several tiles after dinner. Then it was time for Christmas at GKTW!!!! Santa and Mrs. Claus came with presents, there was snow falling, ornaments to make, cookies to decorate, caroling, and carriage rides. There is an ice cream parlor where ice cream is served day and night.
I will have put on a few pounds by the time we get home, I am sure!

DAY FOUR
I, rather naively, thought that all of these updates would be packed full of how much fun we were having. But today, the fact that we are vacationing with a seriously ill child reared its ugly head.
Haley didn’t feel well from the moment she woke op…or more accurately I shook her awake, as she was extremely tired. She looked pale and puffy and tired. Initially we planned to go to Animal Kingdom, but decided to go to Magic Kingdom instead. Once there, she perked up, and we rode lots of rides, including Space Mountain 3 times.
We left at 3 PM as we had dinner reservations at MGM. Once in the car, she started complaining of an earache, and I was noticing a new lupus like rash, so I gave her some Lortab. She decided she wanted to skip MGM. The other kids were disappointed, but have really been troopers about all of this.
By the time we got back to the villa, the pain was worse; I gave her morphine, and took the other kids out to the arcade. By the time we returned, the pain had become unbearable, and we headed to the pediatric urgent care clinic. She was seen very quickly, and I was pleased at the care she received there (they even gave us a follow up phone call in the morning, but I am getting ahead of myself.) We were told she had a “blister” on her eardrum and the eardrum would probably rupture soon. She was given ear drops and amoxicillin. She was offered Tylenol with codeine, but once the doctor learned of our personal arsenal of pain meds, that offer was withdrawn.
Haley felt terrible the rest of the night; we were up until the wee hours with either pain or nasal congestion driving her crazy. Finally, the eardrum ruptured and the pain went away, but now she can barely hear out of that ear.
We finally fell asleep around 3am.

DAY FIVE
Haley looks awful in her sleep. So puffy and pale. We opt not to wake her, and she sleeps in until noon. She vomits as soon as she gets up. Not sure if this is “ear related” or maybe from all the pain meds. Once awake, Bruce runs to Chili’s for take out, she takes one bite and says she has no appetite, so Bruce (my hero, and daddy of the year), goes to Wal-Mart to find things he thinks might appeal to her. He comes back with fresh fruit, pudding, popsicles, and yogurt. She immediately ate some of everything. I went to the office and borrowed a couple of movies and we played a board game. I took advantage of our “quiet” day by doing laundry, and packing souvenirs (2 suitcases full already!) I got pretty tired, and climbed into bed for a nap around 3pm, I was just drifting off when Haley and Bruce came in and said “Let’s go to the Magic Kingdom!” WHAT!! I tried to think of some reason I should stay there and have my nap, but I really couldn’t. If Haley felt up to going, I needed to go.
It was a strange afternoon and evening. She vacillated between being deliriously happy and crying her eyes out. It was crazy!! I am assuming this is the increase to 20mg of prednisone, combined with the stress of feeling so badly on her MAW trip. Of course this makes me vacillate between wanting to hug and kiss her and make it all better, and strangle her.
The highlight of the evening of was dinner at the Coral Reef at Epcot. We ate by the windows of a huge aquarium while fish and divers swam and played. It was really fun, and the kids loved it.
Our plan, although subject to change, is to hit Sea World tomorrow, and Universal studios Monday. We have to be at the airport Monday at 4m to return home.
My mom, God bless her, is holding down the fort at home. Spoiling the puppies!!
I am off to get that nap now…oh wait, it’s 11 PM!!!
Oh well.

DAY SIX

Today started off much better, we all slept in until 10am. The football players from Georgia Tech and Syracuse (playing here in the Citrus bowl) came by to sign stuff and hang out with the kids. Everyone had a blast.
Our plan was for Animal Kingdom, but Haley decided as we were driving there, she wanted to go back to Disney. So, we turned left instead of right and headed off to the Magic Kingdom. Haley, her dad, and the boys then rode Space Mountain 3 times in a row, while Kendall and I shopped for souvenirs. Haley started feeling badly again, and we went back to our villa. We ate dinner at the Gingerbread House, and watched some of the movie “Garfield” at the movie theater there. We, of course, had ice cream, and went to bed early! Mayor Clayton, a rabbit, tucked the kids into bed, and they LOVED it. He was very sweet and funny….for a rabbit.

DAY SEVEN

My back is killing me today…could it possibly be from trying to stuff 200lbs of souvenirs into a suitcase meant for 100 lbs of luggage? Or maybe from a too-old body doing too many roller coasters?? Doesn’t matter…Bruce is sent back to Wal-Mart to buy another suitcase.
Our plan was to go to Universal studios, but it was much too cold. So, we went out to lunch, and to see a movie (Lemony Snicket). Then off to the airport and home.
Our only excitement came when we got home. My mom was having chest pain and had an irregular heartbeat. Bruce took her to the ER and she was in Atrial fibrillation. If you ever want to be seen quickly in the ER, say “chest pain”, they are magic words. Anyway, she was admitted and given some meds to regulate her heart rate. Thankfully, she did NOT have a heart attack.

Yay!! We are home!! It is so nice to be back. My mom should be out of the hospital tomorrow.
We had a nice time; I wish Haley had felt better for the trip, I think she was a little bummed about that. We only went to 3 out of the six parks.
It is funny, I guess I thought that this trip would be a vacation from illness…and yet, it followed us!

Thank you, Lisa for updating while I could not get to a computer.

Haley will get labs tomorrow.
Thanks for checking in on us.
Love and Hugs, Cheryl

MOnday, December 20, 2004 12:56 AM CST
Update: Haley and family discussed postponing the trip till Haley felt 100Haley was adament that they stay. She insisted she WAS enjoying herself, although she had been so sick. Haley is a tough little cookie. SO the family made an agreement to stay and make the best of the remainder of the trip. I know they went to Epcot to go to dinner at Haley's favorite resturant, "The Coral Reef". As well as got some shopping in at Down Town Disney.

I was so thrilled to hear they were staying I almost cried. I know what a wish like that means to the family. It is supposed to be the BIG Band Aid for all the owies. The prize at the finish line for the race run well. Haley is running her race, and winning in my eyes. Of course Cheryl would like to say it is a marathon. haha.

I know tonight The family returns late in the evening. I hope and pray that visions of Mickey and Minnie dance in their head. I hope that the memories of the trip are full of laughter and joy. No owies and pain. I know Cheryl said she was creating a journal entry for every day. I can't wait to read what they have seen and done. So, stay tuned more updates to come. God bless you all and thank you for your prayers.

Ps/ if you can get a chance drop a note in the Guestbook for Haley. I know she said she can't wait to read her mail and messages when she gets back.

Much love!
Lisa (Aiden's mom)

Friday, December 17, 2004 6:40 AM CST
HI everyone! All I can say; it is MAGIC!! This is Lisa again, (Aiden's mom). Updating with a good update from yesterday. I was blessed enough to get to drive out to Orlando (I live in St.Petersburg) and meet the Vincent family. The GKTW resort is breathtaking. There is happiness everywhere. I saw Haley and all the kids. They were getting back from lunch and there was a ton of smiling faces. Haley and the family were exploring all morning the village, and were having a wonderful day. The weather was perfect.

Haley took Aiden minature golfing, they rode on a Choo Choo train, played games, explored the property, and had a blast. Haley got pretty tired, so she went back to the room to rest, and we went SHOPPING. All the kids came with Cheryl and I to the Disney shops. I searched for the perfect little gift for Haley. All the kids seemed to have fun. I even got glimpses of smiles from Kendall at ME! (I know she wants to hug me!)

Yesterday seemed like a better day and as I was leaving more dreams were coming true! They went to eat dinner and were about to have a snowball fight, with REAL snow. Horse carriage rides, and SANTA was coming and bringing... you guessed it MORE presents! The kids were full of delight and happiness. Haley looked tired but as beautiful as always. She would walk around holding Aiden's hand and hugging him. Her love is like a glow that surrounds her. (see I am not her mom, so I can say all these things and not sound silly!)
We even got a sneak preview of one her newset (and my favorite) songs. It is called "HOTS". Pretty amazing I have to say.

Seeing that family with all of the sparkles of Christmas lights in every room and corner, really reminded me what the holiday and really what life is ALL about. Love, kindness, smiles even when it is hard to smile, and keeping Christ in the center of ALL things. I left so reluctantly last night, calling my husband and said: "If there ever were parents I would want to emmulate, it is them. If there were ever a child I would want Aiden to emmulate, it is Haley." I am so thankful I got to see them again. And yesterday was a wonderful day of Magic for the Vincents as their "wish" comes true....

Thursday, December 16, 2004 7:21 AM CST
HI This is Lisa, Aiden's mom. I am updating the website becuase Cheryl is having a little dificulty getting her lap top to sign in. She said she will give a full detailed update the minute she can. In the mean time, I am honored to help them out!

Well Haley has been getting sicker, and in spite of that the little trooper has made such a great effort to have a wonderful time! The spent the day yesterday with another WISH family. (Friends from their online support group, CLASS.) Cheryl said it was wonderful having friends with them and enjoyed that visit very much. They stayed at Disney for several hours, walking around and having fun. Of course to Nick and Logan's dismay they didn't do any of the "cool" rides like space mountain. There will be many more days though!

Haley is having pain. Over the summer she had a situation where her skin was splitting open with little fischers. Now it is on her face. Her eye lids, lips, mouth, all have these little cuts. My little hero Haley just grinned and beared it with the cold wind beating her face.

As I spoke to them last night, I could hear a late night ice cream order in the back ground. Lots of mention of whipped cream and sprinkles. They are having a very good time, and hope that today will bring less pain, and just a wonderful and blessed time. Haley had to double her steriods again last night, orders from Atlanta. She is now on 20mg.

I will ask you to please pray for this amazing family. Pray that they are blessed for their faith and cheerful attitude through everything. The weather will be nicer today and the rest of the trip. I know they will have a time they will never forget! Today they will be taking photos with Mickey and the Gang. Playing minature golf, eating MORE ice cream, and watching movies as well as visiting more theme parks! It sounds like SO much fun. I am so happy for them!

Tuesday, December 14, 2004 8:55 AM CST
DDay is TODAY!!! DDay = Disney Day, of course!

Yet, it would not be a Vincent vacation if there wasn’t a wrench in the works…..
Sweet Haley id trying her best to get sick again! Her labs have been a little funky for a couple of weeks now, and last week her platelets dropped from 450 to 64..in 7 days!!
Her eyelids are swelling, and we spent 2 hours at the hospital “ultasounding” her abdomen and chest.
Last night at bedtime, her temp was 102.7. She cried, saying she didn’t want to get sick again. It breaks my heart.
But, we are still going to Disney…the only thing that will stop us is an actual admission to the hospital!

So..back to Disney…we leave at 8pm!! I will update the CB page daily…probably in excruciating detail!! Tomorrow we are planning to meet up with Ashlee’s family, and go to the Animal Kingdom Park. Lunch is planned at the Rainforest café.

I did find out the temps are chillier than we originally thought, so I am spending this morning re-packing our suitcases.

Please keep Haley in your prayers this week, specifically that she feels well enough to enjoy this trip.

Also, please pray for Romina, she has had 2 liver transplants in Chile, and is experiencing many complications.

Hugs,
Cheryl

Friday, December 10, 2004 9:41 PM CST
4 DAYS AND COUNTING…………

Disney here we come!!

Our Atlanta trip was AWESOME!!! Haley totally rocked!! There were very important people on the program as speakers ( the CEO of Emory, the Dean of Emory med school, the CEO of CHOA, the chief of staff at CHOA) and then there was Haley…singing her heart out about her “dirty rotten liver.” It reminded me of that commercial….two tickets to Atlanta $250, tickets for the event $50, watching your daughter sing about liver disease….PRICELESS!

After the program, we went and dropped off some Christmas presents for the transplant team, and headed home. It was nice to just visit and not have to be there “officially”.

So, I have been thinking about friendships lately. My life has changed so dramatically in the last couple of years; I have become a rather “high-maintenance” friend. I am the one who has to cancel plans, frequently, and often at the last minute. I am the one who sometimes can’t muster up the energy to get out of my pajamas during the day, much less meet you for lunch. I am the one who no one can ask “How are the kids” and hope to get any kind of a simple answer. I am the one who can’t volunteer to do anything, because I can’t commit…what if she gets sick, what if we get “the call”? I am the one who misses church more than I go, because Haley’s joint pain is at its worst in the mornings. I could go on and on, but I think you get the picture.

Because of this, a lot of my friendships have changed. A few wonderful people have stayed in my life, and help where they can. They put up with me, and love me, and support me. And then there are the new friends, my liver moms, and my CB moms who really GET it. They have become incredibly important to me, and a source of strength and support I wouldn’t have even thought possible.

But one stands alone. She is my BEST friend. She is first one I called that terrible day Haley was admitted to the hospital for the first time. She, along with her husband, drove Bruce 6 hours to Duke in the middle of the night, when Haley and I were being flown there. She sat next to me in the PICU waiting room as tears slid down my face…not speaking…just being there. Everyone knows how hard this is on the parents, but what about the Jennifers? She loves Haley too, and she also loves me…to see both of us hurting so much of the time must be exhausting for her. But she listens endlessly, she remembers which labs we are worried about, she even comes and drags me out of the house when she knows what I need better than I do. I never tell her “thank you”, and I don’t even feel bad about that….because I know she knows. She knows I love her more than I could a sister. Our journey with this illness is far from over, and I face it a little easier with her by my side. I hope that any of you reading this who also has a sick child…well…. I hope you have a Jennifer too.

Hugs,
Cheryl

Friday, December 3, 2004 10:26 AM CST
**Haley is a featured child this month at Tumble weed, click here**

December is here! What a busy month this will be for us too!

Sunday, December 5th, is Haley¡¦s Make a Wish send off party. Food being donated from Subway. Thank you Subway.

Next week, December 8th at 2:30PM, Haley will be singing at the Emory pediatric clinic dedication ceremony. She will be singing "The Dirty Rotten Liver Blues"¨.
Who would have ever thought that a song written for her GI doctor, on a NAPKIN, would end up being recorded on a CD, and distributed all over the country. Over 500 copies have been sent out!
In Feb, the St Louis chapter of the ALF has invited her to sing at a fundraiser there.

Next up, drum roll please...our long...long...LONG awaited Make a Wish trip. YAY. COOL BEANS!!!!

Yes, December 14th at 7:00 PM we will board a plane bound for Orlando and Give Kids the World.
We will come home on the 20th, and then CHRISTMAS!!!.
I LOVE Christmas.
I love everything about it.
I am especially going to love it this year, because I am being forced to simplify. Our December is SO busy, I am not even going to shop until we get home.
THIS year is going to focus on family, and being together, and enjoying our home and decorations, and lights, and watching the Charlie Brown Christmas, and going to church, and remembering this is ALL about the birth of a Saviour.

Haley is having some scary symptoms again (for those of you who remember our "flare" of 18 months ago), facial swelling and her complement levels (lupus labs) are dangerously low.

She was sent for an echo yesterday which showed "trace" fluid around her heart.
She is sleeping alot, didn't get up until 1:30pm yesterday!

The plan at this point is to double her prednisone, and repeat labs in one week...if no change, we will increase prograf also.

**GUESTBOOK ASSIGNMENT #4 What was your favorite Christmas gift?
When I was 10 I got an easy bake oven..I loved that thing..

I asked Haley, she said hers was the bedroom make over we did for her last year.
Love and Hugs,
Cheryl

Monday, November 29, 2004 1:30 PM CST
Friday, the day after Thanksgiving, we put up the Christmas tree. The girls were really into it this year, and I got some cute pictures of them rifling through the ornaments.looking for just the one they wanted for the tree. We talked about some of the special ones and how they made our tree “ours”.
It was an exhausting day, and I though I was feeling pooped from trying to keep up with the pre Christmas excitement of 4 kids, and 2 small puppies. But by Sat. morning it was clear this was more than just being a little over tired. I was SICK. The last time I felt that bad was 10 years ago when I had influenza A. I had gotten a flu shot, so who knows what wonderful virus invaded my body, whatever it was it kicked my butt, and came seriously close to landing me a night in the hospital.
Even today, the exertion of walking from my bed to couch makes my HR shoot up to 140. An improvement over Sat when it was 160. But, I am slowly feeling better. I was hoping to get back to exercising this week…maybe Wed.

Haley had her own drama with a major kidney stone attack….severe pain, vomiting, blood in the urine…the whole bit. We kept them home, because her most recent CT showed they were small enough to pass. But painful. Lortab helped some, but I am going to ask for something stronger for our MAW trip…just in case.

And speaking of our trip, we leave for Orlando on December 14th with tickets donated from Delta airlines (Thanks Delta!) That is only 16 MORE DAYS!!!!!!!

Our MAW “send off” party is Dec 5th, and should be great fun.

Then on Dec. 8th, Haley will be singing at the dedication ceremony for the Emory pediatric clinics. If you live near Atlanta, we would love to see you there. It starts at 2:30 PM.

That is all for now, I am still a little tired, so I will update more later in the week.
Have fun !!

Wednesday, November 24, 2004 4:17 PM CST
Thanksgiving Vincent Style

Shamelessly stealing this idea from a friend, (See Kendrie’s site above) I interviewed my children about Thanksgiving. Every word is from their mouths, believe me, no one would make this stuff up!!.

Kendall is 5 years old. They hit Thanksgiving pretty hard in kindergarten, so I had some high hopes for her.

Mom: Why do we celebrate Thanksgiving?

Kendall: Because it’s a special holiday.

Mom: What do we do on Thanksgiving?

Kendall: Eat Turkey.

Mom: What does it mean to you?

Kendall: Nothing.

Mom: What are you thankful for?

Kendall: Turkey.

Logan is 9 years old. I was sensing a “theme” with his answers.

Mom: Why do we celebrate Thanksgiving?

Logan: We celebrate the pilgrims

Mom: What do we do on Thanksgiving?

Logan: Celebrate with our family.

Mom: What does it mean to you?

Logan: Celebrating .

Mom: What are you thankful for?

Logan: Everything God has given me.

Haley is 11 years old and homeschooled. We may need to re-visit the chapter on pilgrims.

Mom: Why do we celebrate Thanksgiving?

Haley: Because we..I don’t know…no comment.

Mom: What do we do on Thanksgiving?

Haley: Eat, talk, celebrate, give thanks.

Mom: What does it mean to you?

Haley: Being with my family and friends, celebrating what I have, and not taking anything for granted.

Mom: What are you thankful for?

Haley: Everything that God has given me, except for my liver disease.

Nick is 13 and feels the need to be “Mr Cool” in all things. He knows everything, and it is only because of his good nature that he is able to tolerate the fools who surround him.

Mom: Why do we celebrate Thanksgiving?

Nick: Because the pilgrims ran out of beer, so they stopped at pilgrim rock to meet up with the Indians.

Mom: What do we do on Thanksgiving?

Nick: We invite over people and they hang out with us.

Mom: What does it mean to you?

Nick: Nothing.

Mom: What are you thankful for?

Nick: This is so stupid..why are you doing this ( this goes on for several minutes..insert any 13 year old vs mom argument you like)

Mom: (with gritted teeth) What are you thankful for?

Nick :My x box my friends, lots of stuff…

WHAT MOM IS THANKFUL FOR

To Nick – I am thankful that you will grow out of this stage. I am also thankful for the opportunity to be a part of your life through it. I am so thankful to be your mom…I am so thankful we were able to adopt you as a baby. No two parents could love you more. In that boy-man face, I can still see my baby. I am so blessed.

To Haley- I am thankful that you are so bright and easy to homeschool, cause goodness knows, I am not much of a teacher at times! I am thankful for your wisdom and maturity that inspires trust in your father and I. As you grow older, we know you will make wise choices. I am thankful that you are so brave. You go through so many hard things and yet you often are the one comforting me. I am thankful that I see only the best of me in you.
I love you.

To Logan- I am thankful for your loving and generous nature. You are always looking out for everyone else, especially your mom. I am thankful that you have a “contented” nature, you are always happy with what you have, never wanting more. And boy can you save money. That will come in handy some day! I am thankful you are my son.

To Kendall -I am thankful that God told Daddy there was a little girl in Guatemala who needed a mommy and daddy. I am thankful that we were able to spend your first year home in a less stressful time of our lives. I am thankful for your unique personality, your tomboyishness, your love of learning and school, and your sweet goodnight kisses. What would we be without you. You are my heart.

I am thankful I can hug and kiss my kids tonight, I am thankful we have today, and today is a good day.

Have a blessed Thanksgiving.
Bruce, Cheryl, Nick, Haley, Logan, and Kendall
ASSIGNMENT #3
Nobody has an excuse to miss this assignmet!!!! I mean it!! I will show up and beat you, if I find out you came by and skipped our guestbook assignment THIS week!! Okay...sorry...the stress of the holidays :)
Anyway, The assignment is: What are you thankful for??? Leave your answer in the guestbook.
HUGS, Cheryl

Saturday, November 20, 2004 5:49 PM CST
WISH TRIP IN 24 DAYS!!!

The pancake breakfast was this morning and once again I get “warm fuzzies” thinking about our friends in this community who continually pull together to support us in our time of need. A big “Thank you” to Applebees and their staff for all of their help, and to all of our “Haley’s Helping Hearts” volunteers who helped make the day a great success.

Haley is feeling pretty well these days, good days and bad days..nothing new really. She sees her local pedi on Tuesday for labs.

We will go to Atlanta on 12/8 for the dedication of the new Emory pediatric clinic. The ceremony is at 2:30 PM for anyone interested in coming to hear Haley sing.
And speaking of singing…she has 3…count ‘em 3…songs near completion. So the new CD’s will have a total of 6 songs. The new songs are called “Prednisone”, “Aiden’s song”, and “Everywhere”. They are all very good (says proud mommy) and her “music man” is doing an amazing job at writing the music for them. When they are complete, I will let you all know, so anyone who wants one can request a copy.

Our house went up for sale on Thursday. It seems so strange to see a “For Sale” sign in front of our house!! And we are showing it for the first time tomorrow. We have been looking at neighborhoods in Johnson City, and even visiting a couple of churches in anticipation of living there next year. Tomorrow morning we are visiting Christ Fellowship.

I am adding a few links to Haley’s page. If you have time, go check them out.

Not much of an update I know, but I am beat!! That pancake breakfast was too much like real work for my body…PLUS I actually went to the gym last week (Thanks Kimberly!).

Hugs!
Cheryl

Thursday, November 11, 2004 7:20 PM CST
Hello everyone.
Greetings from Atlanta.
Not to state the obvious or anything, but a lot of people live, and therefore drive in Atlanta!! I gave myself 30 minutes to get to the hospital this morning (maybe a 15 mile drive at most) and it too more like 50 mins. So I have decided no matter where I want to go in Atlanta, I will figure out how long it will take me, and then add 20 minutes!

It was decided, quite impulsively to bring Nick and Cara (Corgi) on this trip. The 10 week old puppy is being much better behaved so far than the 13 year old son. It has been nice to have the extra company, or so I keep telling myself…but I am really thinking WHAT THE HECK WAS I THINKING????
What is wrong with a woman who could have taken her newly 11 year old who reads and amuses herself and never asks for anything on the way, goes to the bathroom when we stop on bathroom breaks, lets her mom listen to the Dixie chicks and contemporary Christian music all 6 hours even when there is a perfectly good DVD player in the car, and is all in all a stepford child when it comes to traveling ……..this crazy woman who voluntarily adds into the mix a partially housebroken puppy and a very sassy, hormonal 13 year old with a touch of ADD who wants to either listen to top 10 hits (Gag me) or watch “White Chicks) on DVD? I must be ill. There must be a name for this illness.

Onto more important stuff….
We went to clinic today. First we went to the liver support group. There was only one other family there, so it was quite small, but the speaker was very good. The topic was “Nutrition”, and I learned I am doing EVERYTHING wrong. Did you know Pop tarts are NOT a good after school snack? Here I thought they were the next best thing to a hot meal. So, I found out I need to get my act together in the kitchen. She used words like “parent’s responsibility”, and “gatekeeper of the kitchen”. I also found out MY food pyramid is upside down.

After that, we saw the liver team. As a side note, one of the financial guys came and congratulated us on our BCBS win, he said that NEVER happens, and he would have bet against us…so I wanted to give another thanks to my friends who got in our corner and wrote letters.
Our hepatologist had a GI fellow working with him today, and it is always interesting (if that is the right word) to hear how they describe Haley to each other. He started by saying Haley was one of his “special” ones. Very sweet. And then he told her he would tell her Haley’s full history when he had a free hour. He said on the liver side of things, Haley’s liver is “very small, and very lobulated”. He said that although things were relatively stable, there were indications that her liver functions were becoming compromised. Such as a rising direct bili and elevated platelets, that in his opinion, indicate more shunting from the spleen to the liver. He felt that a large component of her fatigue and her pain were coming from her diseased liver, and that is good news, as a new liver will make that better! The surgeon came in next and no one is ready to do living related donor yet, they feel she is still “too healthy” not to wait for the perfect cadaveric liver.
Some disturbing news though is NO pediatric transplants have been done since August due to a lack of donors. Many children have gotten very sick waiting.
PLEASE talk to your family about organ donation.

As far as the lupus goes, the feeling so far is that this is mainly in her skin and not systemic. Although it drives her crazy to continually have an itchy, ugly rash…it is not dangerous, and it won’t impact her transplant status. Tomorrow we see the rheumatologist and get the last word on that subject!!
Starting in Jan, we will be seeing the hepatologist every month, and the surgeon “as needed.”
All in all, it was a good visit

Now, some great news…BABY MARISA GOT HER LIVER and is doing GREAT!!!! Go visit her site and give her some love….

Love and hugs,
Cheryl

PS Haley’s party was awesome, the correct answer was 61 guests.

November 12th
Well, for some reason my above update didn’t want to post on caringbridge last night, no matter how many times I copied and pasted! So, I decided I may as well finish our “Atlanta update”, and post it all at once.

I followed my “add 20 minutes to the travel time” rule this morning and pulled into the Egleston parking garage right on schedule. I then followed the yellow footprints (like I have done a million times) to the clinic, only to find the garage door padlocked!!
They have recently completed a beautiful new clinic building, and you aren’t supposed to park in the parking garage. So, despite the great 2nd floor parking space I had, we had to get back in the car and drive around to the clinic where they have VALET parking. Which begs the question, do you tip a valet at a pediatric clinic? All of this, and we were still 10 mins late!!
To celebrate the opening of the new building, there was a book fair going on in the lobby, and while we were looking at books, a very nice lady approached us and asked us if this was Haley. I was a little surprised anyone had recognized us in the lobby of a large clinic. But to make a long story short, she was the CEO of Emory peds clinics, and had served us dinner at RMH one evening and heard Haley sing. She asked if Haley could sing at the Emory clinic dedication ceremony in December. What a little celebrity I am raising!! It is Dec. 8th, and I think we will go..if anyone is in the Atlanta area, come on out!!

So, we saw Dr Vogler (Rheumatologist), and he actually feels her joint pain may be liver related. That would be very good news, as it means the transplant would “cure” her pain.
And pain is, of course, a major issue for her. Nothing else major happened. He did say he would like us to see a dermatologist in Kingsport to see if we can’t get a better handle on this rash that never ends.

Now, as you know from my previous entry, I lost my mind and brought my puppy with me. She, naturally, started showing symptoms of the Giardia infection our other dos had last week. She was actually pooping bright red blood. So, off to Publix I went to get a Flagyl prescription filled….for the dog!!! My life is interesting.

Well, I am off to watch Survivor…my fix of reality TV

Love and Prayers!!
Cheryl

.

Thursday, November 4, 2004 9:01 AM CST
Friday November 5th, 2004

At 8:22 am, 11 years ago today, we were blessed with an amazing little girl.
I had no idea when I looked at that sweet tiny 5lb person, that 11 years later she would have taught her mommy so much about life.
Haley - You are my hero...You are brave, in the face of fear. You can laugh at a life that hasn't always been kind to you. You can sing like an angel, and you praise God even in the unpleasant things.
As you grow into a young lady, I delight in you more every day..I love that I see the best of me in you. I love that we can eat popcorn and watch Gilmore Girls together. I love that we laugh at the same things, and love the same music. I love that we can spend hours at the mall shopping for clothes, and still want to go back the next day.

You are my dream daughter, God has blessed me beyond measure, and I love you so very much. Your mommy.

Thursday already!! This week has flown by!
Haley has been having a good week, I think she is so excited about her birthday, that she has actually WILLED her body to behave.

Lizzie McGuire paraphenalia of all types has completly taken over my dining room table. I have filled over 80 treat bags, we have 2 pinatas, and a cake rumored to feed 100 people. Who is this girl? The Queen of England? Somebody needs to get her mother under control immediately.

Some of the invitations mailed were returned to me.....who knew square envelopes required 12 cents more postage? Who made up that rule?
So, please come if you can...EVERYONE is invited...we want a chance to hug you, see you, and thank you for helping us through these last couple of years.
No gifts are necessary. Haley's mom and dad, and the kids from her class are taking care of that part :)
Sat Nov 6th 1-6PM Drop in Party
2233 Sheffield St (We are listed in the phone book too)

Gotta run...oh wait, the dreaded assignment..we were going to guess # of presents, but that started to seem greedy, selfish, decadent...pick an adjective....and we certainly don't want anyone to feel they need to bring a gift when all we want is to see them!!!So how about guessing # of guests?

For those who have asked, Haley's actual birthday is Nov. 5th (tomorrow).

Love, Cheryl

Monday, November 1, 2004 9:54 PM CST

Thank you for your amazing responses with your first assignment. A+ for everybody!
Now, for your next assignment...I am going to request a "banner" be made for Haley's website. They want me to have suggestions of a motto...and I can't think of a thing. And ideas?She made a comment to me once about not letting life pass her by, and I may try to use that in some way. But just think about it. Please?

To answer the "whys" of these assignments, several reasons,
1.I feel like I am doing ALL the work here!!
2. It is a passive aggressive way to get you to sign the guestbook.

But the actual reaason is this...I have not been letting Haley read the journal entries. Too often, I talk about things that are hard for her to listen to. Don;t get me wrong, Haley is a bright girl, she knows how sick she is, but it can be emotionally drainig to read it over and over. However, she will continue to visit the guestbok, and she knows the assignments given, so that is really fun for her. Our next one (after the banner) is to guess how many presents she gets for her birthday, (Family presents count) I'll post that one Wed. or Thurs....So answer todays quick...no time to fool around.Be sure to check back Wed for the official birthday question!!

Okay, thanks for playing,
Love you guys,
Cheryl

Wednesday, October 27, 2004 2:43 PM CDT
On October 30th , Heaven's gates opened wide, and Cheyenne Marie stepped through. According to one of her father's last journal entries, Cheyenne longed to do all the things she used to do, she wanted her body to work again. Now she is playing freely with all the angels who went before her.
Unfortunately, she leaves behind a heartbroken mother and father. They loved their daughter more than anything, and will grieve her loss for the rest of their earthly days. But they WILL see her again. That is the promise. We will see her againn too. Until then, fly free sweet girl. Your job here is done.

PUPPY NEWS!!!
A rolled up newspaper can be an effective training tool when used properly. For instance, use the rolled-up newspaper if your dog chews up something inappropriate or has a housebreaking accident. Bring the dog over to the destroyed object (or mess), then take the rolled-up newspaper... and hit yourself over the head as you repeat the phrase,"I FORGOT TO WATCH MY DOG, I FORGOT TO WATCH MY DOG!"

SEVERAL BITS OF BREAKING NEWS……….
First, after nearly 2 full years of trying, Haley is going to have a wish granted. YEA!!!! We will be going to Disney World, staying at Give Kids the World Village. This is a very special resort for children with life threatening illnesses, and their parents to stay. I have heard amazing and wonderful things about how hard everyone tries to make the experience magical for the whole family.

And as if this wasn’t enough to have us practically wetting our pants with excitement, one of our special “liver friends” will be getting her wish granted there the same week. Holy cow!! I couldn’t have planned that better myself. Check out her link above (Ashlee) to see a really cute sweet little girl and her sister.

Watch out Mickey and Donald, the Vincents are coming to town. Stay tuned for a (possibly painful) blow by blow count down to our trip. We leave on 12/15, so that is 49 days. WOOHOO.
It is funny how this worked out, because NOBODY loves Disney more than me. I am one of those freaks that took my kids at 2 months old, because..well..they were KIDS and needed to see Disney. BUT I totally discouraged Haley from choosing Disney as her wish. I wanted her to do something we could not give her, like meeting someone famous. Well for whatever reason, wish after wish fell through (NEVER MAW’s fault, they are amazing!!!), and she finally said “I want to go to Disney!”. And it was as if a light bulb went off in this dimly lit head of mine. Sure, we could send her to Disney, but we can’t give her a WISH experience at Disney. After speaking to so many parents whose kids have gone on these trips, I realized it is not “just” a Disney trip, it is something much more.

Next news:
ALL ARE INVITED TO CELEBRATE WITH US ON NOV. 6TH
Technically, this is Haley’s 11th birthday party, but we want to make it a “Celebration of Life” and a chance to say THANK YOU to all of you who have supported us, loved us, prayed for us, fixed us meals, sent cards, emails, and so very many other acts of kindness.
SO ADULTS AND KIDS ALIKE….PLEASE COME BETWEEN 1PM and 6PM
We will furnish all the food, drinks, fellowship, piñatas, treat bags, games, and I will even get Haley to sing, and Bruce to do some stand up comedy.

If you live in our area, please come, it is an open invitation, and no gifts are necessary.

Okay enough exciting news…on to medical stuff:

Haley’s temp is 102 today; she is nauseous and has stomach cramps. But, I took her in last week and her temp was even higher, and they said they couldn’t do anything else. So, we just wait, and pray that a new liver makes her better.

Her spirits are good. She enjoys verbal sparring with all of us. Sweet girl, but VERY sharp tongue. Just this morning…...

Haley: "Nick, get your dog off of me!"

Nick: "She wants to give you a kiss."

Mom: "She wants some of your cereal."

Nick: "No, she want to give you a kiss."

Haley: "What are you? The Pet Psychic?"

Now I know that was sarcastic, and a little rude, and a good mom would have firmly told Miss smarty pants what is appropriate talk, but THIS mom burst out laughing. I still giggle about it every once in awhile. And it is probably funnier to me because Haley and I actually watched the Pet Psychic the other day. Now, I don’t want to offend anyone who thinks this lady can really read animals minds, but WHAT A WHACK-O!!!!

You know how on Americas Funniest Home Videos, they have "Assignment America’s"?
Well, I have an "Assignment Web Page Readers" (And this may be the first of many, I think this may become an interactive web page!)
Here it is...

If you have children, please list in our guestbook, what they are dressing up as for Halloween. If you are a grown up and dressing up, include that too. Our costumes will be:
Nick - Gorilla

Haley - Bride

Logan - Harry Potter

Kendall - Duck and/or Spongebob

Mom - Frazzled homemaker

Dad - Nerdy middle aged man driving his kids around the neighborhood trick or treating in a minivan.

Next time I write, I will tell you why the assignments….There is a reason.
But for today, this is getting too long.

I am going to end with a Bible verse I read yesterday, and a few specific prayer requests (see links above)
Aiden - Diagnostic scoping done today..pray for good results
Kody - Had brain surgery Monday
Cheyenne - Progressing symptoms

"Since we have been made right in God’s sight by faith, we have peace with God because of what Jesus Christ our Lord has done for us." Romans 5:1
In His Grip,
Cheryl

Sunday, October 24, 2004 9:35 PM CDT
Somebody said it takes about six weeks to get back to normal after you've had a baby...somebody doesn't know that once you're a mother, "Normal" is history.

Somebody said you learn how to be a mother by instinct...somebody never took a three-year-old shopping.

Somebody said being a mother is boring...somebody never rode in a car driven by a teenager with a driver's permit.

Somebody said if you're a "good" mother, your child will "turn out good"...somebody thinks a child comes with directions and a guarantee.

Somebody said "good" mothers never raise their voices...somebody never came out the back door just in time to see her child hit a golf ball through the neighbor's kitchen window.

Somebody said you don't need an education to be a mother...somebody never helped a fourth grader with his math.

Somebody said you can't love the fifth child as much as you love the first...somebody doesn't have five children.

Somebody said a mother can find all the answers to her child-rearing questions in the books... somebody never had a child stuff beans up his nose or in his ears.

Somebody said the hardest part of being a mother is labor and delivery ...somebody never watched her "baby" get on the bus for the first day of kindergarten or on a plane headed for military "boot camp."

Somebody said a mother can do her job with her eyes closed and one hand tied behind her back...somebody never organized seven giggling Brownies to sell cookies.

Somebody said a mother can stop worrying after her child gets married ...somebody doesn't know that marriage adds a new son or daughter-in-law to a mother's heartstrings.

Somebody said a mother's job is done when her last child leaves home...somebody never had grandchildren.

Somebody said your mother knows you love her, so you don't need to tell her...somebody isn't a mother.Somebody said it takes about six weeks to get back to normal after you've had a baby...somebody doesn't know that once you're a mother, "Normal" is history.

Somebody said you learn how to be a mother by instinct...somebody never took a three-year-old shopping.

Somebody said being a mother is boring...somebody never rode in a car driven by a teenager with a driver's permit.

Somebody said if you're a "good" mother, your child will "turn out good"...somebody thinks a child comes with directions and a guarantee.

Somebody said "good" mothers never raise their voices...somebody never came out the back door just in time to see her child hit a golf ball through the neighbor's kitchen window.

Somebody said you don't need an education to be a mother...somebody never helped a fourth grader with his math.

Somebody said you can't love the fifth child as much as you love the first...somebody doesn't have five children.

Somebody said a mother can find all the answers to her child-rearing questions in the books... somebody never had a child stuff beans up his nose or in his ears.

Somebody said the hardest part of being a mother is labor and delivery ...somebody never watched her "baby" get on the bus for the first day of kindergarten or on a plane headed for military "boot camp."

Somebody said a mother can do her job with her eyes closed and one hand tied behind her back...somebody never organized seven giggling Brownies to sell cookies.

Somebody said a mother can stop worrying after her child gets married ...somebody doesn't know that marriage adds a new son or daughter-in-law to a mother's heartstrings.

Somebody said a mother's job is done when her last child leaves home...somebody never had grandchildren.

Somebody said your mother knows you love her, so you don't need to tell her...somebody isn't a mother.

I know that is cheating a little for an update, but don't you love that. It is so sweet. Makes me want to hug my mom.

I will update again soon.
In the meantime, please check on Kody (surgery tomorrow), and Cheyenne who is having some problems. Please pray hard for these little ones. They sure don't deserve the hand they have been dealt.

Thanks for stopping by.
Hugs,
Cheryl

Tuesday, October 19, 2004 8:42 PM CDT
Greetings from puppyland.
I am the World's Greatest Mother. I have to be, to have put up with what I have gone through the last week for my kids!! I have nicknamed one of the pups "The Urinator"¨. Get the picture?!
We went to the vet today, I had to ask about the vaccines they give to the dogs. In case anyone is wondering, they use a modified vaccine (weakened live virus) and it is safe for immunosuppressed kids because it cannot cross specie lines. Interesting.

Haley is about the same. I have looked through my last few entries and noticed how little I have really said about her. Truthfully, sometimes it is just hard to talk (write) about how hard and how scary this time is for us. Last week we received some paperwork from her hepatologist in Atlanta. No doctor in the world knows her better. He listed her prognosis as "guarded". It really depressed me. I want her prognosis to be "good"¨, and her life expectancy to be the same as mine! I know there are many who have it much worse than us, and most of the time I can really live day to day. But some days are definitely harder than others. I just have to remind myself that only God knows how long we are here, and what His plan is for her life. My hope has to be in Him, not in medicine.

See why I don't write about this much? Much more fun to write about puppies.:)

Please check on my caringbridge kids. Kody needs extra prayers right now.

Love and Hugs,
Cheryl

Monday, October 11, 2004 2:57 PM CDT
I promised to update on the weekends, and here it is Monday!! Well, I guess one day late isn’t too bad….for the Queen of Procrastination anyway.
For those of you who know me well, you probably already know that I subscribe to the “If you are having stress in your life, add more and more things on to it and see what happens”. So, in sticking with that theory, we got, not one, but TWO new puppies this weekend. And as much as that sound like an incredible impulsive, (and stupid) thing to do, we actually planned it and thought it out. Yes, we thought about it, and STILL decided to do it. Look in Webster’s, under “Gluttons for Punishment”, yep, you’ll see us!

So, Bruce got up at 5 am to drive 4 hours to pick up Cara (pronounced Car-a) (Haley named her. it is Italian for “precious one”). They got home about 2pm, and 2 minutes later I was in love. She is a Pembroke Welsh Corgi, 6 weeks old, would fit in a shoe! Just adorable, and sweet a puppy as I have ever seen. Calm and loving. Oh, I am gushing…somebody stop me!!!!

Next came Kelly, she is a Border collie. Bruce doesn’t think a small dog is a real dog, so our 2nd puppy had to be of significant size. Kelly hitched a ride from her breeders home with a trucker (true story, cost us $75.00, but well worth NOT driving 4 hours again (Why do ALL breeders live 4 hours from us) ), they arrived here about 9:30 pm, not an ideal time for a puppy to get use to her new home and family. So she spent last night sleeping on the bathroom floor (with our son Nick), and having a slight case of the runs. Sorry if that was a tad graphic.

Both puppies are doing well with housebreaking (Cara a little better than Kelly). I think they will both be easy to train. Haley is a little nervous of them both, but she likes to watch them.

Then to further my theory. I decided to give myself a home perm. I have never given myself a home perm. I have long, straight hair, and I don’t let people mess with it. Luckily for me, my hair was too long to do it! I am still thinking about getting a salon perm. Just itching for something new, I guess.

As far as Haley goes, she is, unfortunately still feeling like crap most of the time. It breaks my heart to see her not wanting to get out of bed because it hurts too much to walk. Or to see her beautiful face covered with the rash of the week. Or to hug her and feel hot, feverish skin. It is not right. Although, I have to say, she handles it much better than I do.

Well, check out our 2 local fundraisers at the top of this page, and keep us in your prayers please.
Hugs,
Cheryl

Sunday, October 3, 2004 10:24 AM CDT
Hard to believe it has been almost 2 weeks since I updated this page! I have no idea where the time goes. October already!
We are enjoying the beginnings of fall here; this is my favorite time of year. It is so beautiful here in the mountains, I feel lucky to live here.
And speaking of living here, we are almost ready to list our home. We still need to paint the kitchen, work delayed by kidney stones and stomach bugs, but back on track now!
Our plan is to move to Johnson City, about 20 miles south of where we live now. I want a smaller house, cozy and less to take care of. I feel the need to simplify. I hope we can get all of this done before Haley’s transplant.
Speaking of transplant, I never realized, but it is hard to wait for a donor liver.
Mostly, I don’t like to think about it. But it is so strange, knowing that someone is alive and walking around and enjoying life, and in a few months, they could be donating an organ to my daughter. I feel like I can never HOPE for a donor, because it means death for someone else. Don’t get me wrong, I think everyone should be an organ donor…it is the most loving and unselfish gift anyone can give. It just makes me feel so strange…..waiting.
Haley has been feeling poorly since camp. Yesterday was probably her worst day. Temp was 101.5, major rash on her face and neck, joint pain (requiring Lortab every day, a couple of times a day in fact). So, since her Rheumatologist asked us to get labs during her “mini flares”, we went to the hospital and had labs drawn. No results yet.
Haley’s new thing is she is a “big girl”, and she likes to go in the lab by herself, and she doesn’t want the emla cream anymore. Of course, all the lab people at her pediatricians know her, but this was the hospital and we rarely go there. The lab tech came out to the waiting room to tell me Haley was better than most of the grown ups she had to draw labs on. It makes me proud. She has always been so good and grown up about all of this. She got sick at 7 years old, and through all the procedures, IV’s, lab draws, even foley catheters, no one has EVER had to restrain her. She has always held still and cooperated. She is so brave and remarkable. God has gifted her with such courage and strength. I learn from her every day. I wish I could be more like her!!
We saw the “high risk” peds dentist, in Atlanta last week. As much as I complain about driving 6 hours to see the dentist, he is a really smart and great doctor. He says the problem is Haley’s new molars are coming in without enamel; the same thing happened with her other teeth also. He wants to delay treatment until after her transplant. He said her liver is so sick, it will not metabolize anesthesia, even local, adequately, and the only way to make her comfortable would be under a general. So, his plan is to do a professional cleaning every month until after her transplant, then fix the problem. If her transplant does not happen in 6-9 months, he said we would “re evaluate”.

Bruce is feeling better, slowly but surely. Hopefully, this fixes his kidney problems for good.
I am also much better, although my cholesterol is high at 250!! My doctor says I need to exercise. Are you reading this Kimberly? Call me!! I need a Curves buddy!!

Please check on our CB friends, especially Aiden who has been diagnosed with ultra severe allergies. And Cheyenne, she has a special picture on her website. Check it out, it will bless you.

As always, thank you for checking on us, praying for us, loving us.
We love you all so much. You give us strength.

Love and Prayers,
Cheryl, Haley, and family

Thursday, September 23, 2004 6:27 PM CDT
We Won!! We Won!!
I really want to write some sarcastically witty things about big insurance companies...BUT, I can afford to be magnanimous, and just say “Thank you”.
Thank you to BCBS, thank you to all the people who wrote letters on our behalf, thank you to everybody who wouldn’t let me give up. (I feel like I should be accepting an Emmy or something right about now!)
Anyway, as you can probably tell, BCBS has given us a one year waiver for Haley to get her liver transplant in Atlanta. And now I can get back to the business of taking care of my child, and not worrying about how we are going to pay for it.

Transplant Family camp was lots of fun. I was a little preoccupied as we had had one of those stressful financial meetings right before we had to go.
We ended up with 2 toothbrushes for 6 of us, 4 blankets, 5 sheets (I had packed a crib sheet for Bruce’s bed!), no soap, and no shampoo. The first night we begged and borrowed, the next morning we made a Wal-Mart run. I don’t think Bruce will be letting me pack again for him anytime soon. My concentration is a little off these days!!

We got back home Monday, and Haley was seen by her peds dentist for a cleaning. She has the beginnings of an infection around a crown, and now we have to go back to Atlanta to see the dentist for “high risk” kids. Luckily, they were able to work us in for next Monday. Haley is thrilled.

Wednesday I was sick with the stomach flu. One of those illnesses you only (thankfully!) get a few times in your life, but you will NEVER forget how bad it is. Bruce called in the midst of my visit to the bathroom, and I was able to gasp out “hang on” and then throw up about 100 times. He was concerned enough to leave work to come check on me, but not so concerned he didn’t stop to check the mail WHICH is how we found out our good news about the insurance. I am sure there is some irony in the fact that I couldn’t celebrate, being busy lying on the bathroom floor. But, I am much better today.

Speaking of today, even though my stomach has stopped trying to actively leave my body, this was really bad timing for me to be so sick, as Bruce had his 2nd, and hopefully final, surgery for kidney stones today. I haven’t gone to the hospital, and I feel immensely guilty, but we both decided that the last thing he needs is a GI bug right now. In fact, even on his morphine pump, he told my mom to make sure I changed our sheets before he came home tomorrow!!
Apparently, he had more bleeding this time, and he will be coming home with 2 drains. I will be able to go see him in the morning, and stay until he is discharged.

We found out that Haley’s drawing was selected for the Make a Wish Christmas cards for our area. We are very excited, although they won’t be out until 2005, it seems the corporate sponsor for this year pulled out, Can you imagine pulling out of such a thing!? Shame on them!
Speaking of Make a Wish, Haley’s trip is probably going to be early December. We are going to stay at “Give kids the World” which I hear is just awesome! Hopefully, this time the wish will actually work out.

Other exciting news, Haley has been invited to sing at a black tie gala in St Louis the end of Feb. It is a fundraiser for the American Liver Foundation. She will also sing on a morning TV show with an audience of 250,000. Very cool.

This Sunday, she is singing at Broad Street UMC, and after church we will be driving back to Atlanta, spend one night, then back to TN.

Well, thanks for checking on us. Please sign our guestbook, if you have a minute. We love to see who has been here.

And please remember our CB kids in your prayers.

Love, Cheryl, Haley and family

Sunday, September 19, 2004 11:56 AM CDT
Just back from transplant camp.
It was kind of bitter sweet. We were the only ones there who are pre transplant. It was great to see all these kids running and playing and having such a wonderful time, but it was also hard to see Haley needing so many pain meds just to keep up with the other kids' She had a good time though, and maybe by next year, she will be on the other side of transplant running around without pain!!!
The theme was Live Laugh and Love and they had an awesome carnival. Lots of games, and prizes. The kids had a blast. It was great to see the hospital people out is a different setting too.

And for mom and dad, it was so fun to kick back and talk and laugh with the other "liver parents". They have become some of our dearest and closest friends. I thank God for putting them in our path. And we met some new friends at camp too, that I hope we can stay in touch with.

One more night in Atlanta, then back to TN tomorrow.

Love you all,
Cheryl and family

Thursday, September 16, 2004 3:34 PM CDT
Today was definitely a crappy day. If you want a more upbeat journal entry, go to the history, and read yesterdays. Because today is a new day…and a crappy one at that.
We met with the financial people at Egleston. I can’t bring myself to re live the details, but they are not taking ANY of the financial risk for Haley. Either the insurance pays, or we do…no matter what the cost. So, our options become A) The insurance company pays (Right, and maybe pigs will fly) B) We lose everything we own C) We take Haley to a different hospital.
I have been crying my eyes out all day, I couldn’t even stay in the meeting, I was so upset. Because I am afraid we will end up having to leave this team that knows Haley so well, we are being forced right out the door. Our precious daughter has been reduced to a dollar sign. And I think what makes me so angry is that we are being penalized for having insurance!! If we were unemployed, or uninsured, the hospital would be doing her transplant for much less than what our insurance company is offering them.
I am just really sad about this. These people have been like family to me, and I think I expected them to help us more.
I really don’t even want to go to camp tomorrow, but there are a couple of people coming that I really want to see. I don’t think I am going to be too much fun to be around.

Depressingly,
Cheryl

Sept 14th

We stuffed ourselves into the car and headed off on our 300 mile trek to Atlanta at 10:30 am. By 12:30, we were In Johnson City. That is exactly 22 miles from our home. 22 miles in 2 hours. How could that even be possible, you ask…Let me tell you.
First of all, you never leave at 10:30 that is too close to lunch, so you are not even buckled in before people are actually starving to death in front of your eyes. It is not for the squeamish.
Another thing you never do is tell your 2 little girls that we will be buying them new pajamas on the trip. It is then mentioned approximately every 5 seconds until said pajamas are purchased.
We stopped at a Shoney’s in Johnson City for lunch, me thinking this will be quick, but not exactly fast food. What I didn’t remember is directly across from this Shoney’s is a Target. My little girls spotted that store like a hunter spots its prey. “Target, Target, Target “, they were actually chanting it like a mantra or something. So, many pairs of pajamas heavier, and a few dollars lighter, we were finally on our way.
Now, I had 3 out 4 of my kids in the car with me. #4 is coming on Wed to join us with Daddy. The kids were, of course loud and arguing and I found myself wishing that the other one was with us. His absence was louder than the others presence. Mothers are some kind of whacko people to miss the kind of stuff we miss….or maybe it is just me. But, I MISS you Logan!!!!
We finally arrived in Atlanta at about 7PM (I can make this trip into some kind of marathon, let me tell you!). I was so beat.
Tuesday, we saw Haley’s Rheumatologist, Dr Vogler. He is such a nice man, but they had double booked his morning appts, and we had to wait an hour and 45 mins in the waiting room, with 3 kids!! I talked with the office manager, who was very apologetic, but they at least need to put a good pac man machine in there or small closets to lock the children in if we are going to have to wait like that!!
Our appt went well overall. He doubled her Plaquenyl, which should help the skin manifestations of her lupus. And gave us the go ahead to basically go up and down on her prednisone to control the “mini flares” of her lupus” He did gobs of labs, as usual; I think they drew 10 tubes.
After the appt, we went back to the apartment and swam at the pool and just relaxed.
Wednesday, first let me say that Atlanta traffic is unbelievable!!! We had to be at the hospital at 9:00 and I was 30 mins late, just because of traffic, and I even left early. I guess you have to leave REALLY early. Haley had A CT scan of the abdomen. Good news: Her kidney stones look better. only 2 left, and smaller, Bad news: liver more shrunken and cirrhotic. As one of her docs said to me later, “Her labs are not reflecting what we KNOW is going on in her liver”.
We had a quick lunch at Chili’s then back to the hospital for transplant clinic.
We spent about 3 hours just talking with the different teams of doctors. We got a lot of good information, (if good is the right word) from them. They are such great people, I always feel so attached to them! I pinned Dr Romero down to a “guesstimate” time frame for transplant with Haley’s PELD score, he said 6 months. She has been listed for one. He feels she is clinically stable, but that she will certainly worsen sooner rather than later without a new liver. I asked him if he was absolutely SURE she needed a transplant. He said yes, and offered to show me her liver on CT. I declined; I just needed to hear him say it.
Tomorrow, we have an appt with the financial gurus!!!
Wish us luck!
Love and Hugs
Cheryl

Sunday, September 12, 2004 6:28 PM CDT
I have to be better about updating this site! It is not for a lack of things happening in our lives. I am not sure what the reason is…..the days just seem to disappear somehow. It is scary fast time goes by, especially as I get older.

So, on to the happenings….
I have been “under the weather” lately, for about 3 weeks now. Mainly I have been running fevers and having pretty severe joint pains. In fact, I have been taking painkillers every 6 hours, and it only seems to take the edge off. I went to the doctor, and his main concern, because of our family history, was Lupus or Rheumatoid Arthritis. Thankfully, both of those have now been ruled out. Now, he seems to think it is Parvo virus. I don’t know much about this, but apparently it can last 4 -6 weeks, and make you feel pretty bad. My main concern, as I know all of you CB moms can relate to, is How do I take care of my daughter, and be chronically ill as well. I am grateful, that at least for now, I don’t have to find out.

Haley, my sweet girl, has also not been well lately. So, we of course, obsess over whether this is autoimmune, viral, infectious, liver related and on and on. I take her temperature obsessively and because she is running between 99.5 and 101.5, I am NEVER happy with it. I don’t know why I torture myself with it. I guess so if it really goes high, I will know.
And with the fevers, comes the joint pains…she lives with chronic pain, but as her temp rises, the pain worsens. It must have something to do with the inflammatory nature of the illness. Last night, Lortab didn’t work; we had to move on to morphine.
She is much more rash-y right now too. I am glad she is being home schooled, there is no way she would have the stamina for school right now. Today she slept in until noon, and then we went for a 45 minute bike ride, and she came home, and got right in her pajamas, and got into bed. Just watching TV, not sleeping, but still. I don’t know how much of this comes from her lupus, and how much from her liver disease, but I pray so hard that this liver transplant will improve her quality of life.
She said something to me the other day that really captures the essence of Haley. I was in so much pain, and just not doing anything, and I asked her how she did this day after day after day. And she said, “If you give into it, life will just pass you by.”
Haley wants to experience life, as best as she can anyway.

We are leaving for Atlanta in the morning. I am actually really glad to be going, I think she needs to be seen by the doctors there. Our schedule is Tuesday, 10am Rheumatologist, Wednesday, 10am CT scan…1:00pm transplant team. Then on Friday, we are going to transplant camp for the weekend. It is camp for pre and post transplant patients and their families. It should be fun.

Of course, it looks like we are meeting Ivan halfway!!!!

As far as other family news, Kendall’s hair is still falling out (makes her even more beautiful to us) and we have opted (with the doctors recommendation) not to pursue more aggressive treatment unless it becomes much worse. Then we will re evaluate.
We are still fixing up our house to sell. Why is it our houses never look better than the day we give them over to other people? Why can’t we ever paint the bathroom just for OUR enjoyment?!

Well, I will try to update from Atlanta after our appts.
Please check on our CB friend by clicking on the links above. Prayers needed especially for Jen, who had a bought of rejection last week, and Cheyenne, who had surgery last week.

Love always,
Cheryl and family

Wednesday, September 1, 2004 6:58 PM CDT
Sept. 2nd update

I have been so caught up with the insurance garbage, I have forgotten to mention Haley's big singing event. She sang at a major fundraiser for the ALF in Tampa last week. It was a very dressy, classy affair, and Miss Haley sang both Sarah's song and The Dirty Rotten Liver Blues. She did a great job. I am blown away, that at 10 years old, she can not only write these songs, but stand up in front of hundreds of people and perform them. And she is flawless. Every time.
We have 4 more engagements in Atlanta, and she has been asked to perform at an ALF event in St louis in February.
We will have to play that by ear, depending on when Haley's transplant happens.
* I have added NEW PHOTOS from the ALF event.*

True to form, they "ain't makin' it easy".
We had our official answer overnighted to us, as their 5 days was up today.
We thought...this is it...a "yes" or "no" answer..Finally, after 6 exhausting, letter writing, hair pulling out, screaming at people over the phone, crying in the bathroom MONTHS!! But, no, let's not make it that easy.
You see, they need more information. The 16 trees we have killed faxing them documents isn't quite adequate. They need one more tree to die.

SO....the saga continues...the new information they are requesting is
1) A copy of our initial member handbook.
2) A letter from our transplant GI stating WHEN he determined Haley became a "candidate for transplant".
3) Our firstborn child.

Now our firstborn child is 13, and going through puberty so this part is NOT A PROBLEM!!

Thanks to all my class friends for your emails, I wanted to update you as soon as I knew something...believe me, I wish it were more concrete.

Well, I am off to kill that tree!

Cheryl

Friday, August 27, 2004 3:03 PM CDT
Hello all,
I haven’t updated here in awhile, I have been in a bit of a dilemma. You see, I was told, by a reliable source, that a certain insurance company has been coming to this web site to dig for information on us. Specifically, on any fundraising we might be doing.
Soooo…what do I think about this?
This website was created to keep people informed about Haley’s medical progress, and for our friends and family to have a place to come to pray, encourage, and support us. If you are here for any other reason, you are, as my dear friend Sara would say, A SNEAKY CHEATERPANTS, and we would like you to leave.
As far as funds we have raised, you only need to ask. It is not a secret. In 12 months, because of generous family, friends, and community, we have raised $40,000. In 12 months, we have spent $22,000. in out of pocket expenses. Most of this is medication, as we have no prescription drug coverage, and Haley is on 12 different meds, many quite expensive. Post transplant, her med costs alone will be $25, 0000 a year. Again, no prescription drug coverage. That is why we fundraise.

This whole thing makes s me so depressed. I just want my daughter to grow up. Is that so much to ask? Why should I have to feel like I am begging for money? I AM insured, after all.

Our level II razzle dazzle grievance hearing was on Tuesday….they have 5 days to respond. At this point, we have certainly done all that we could have. Now it is up to them.

Haley hasn’t been feeling well lately, school isn’t working for her. She just can’t keep up with the other kids, and she puts so much pressure on herself. She can’t be there and do it half way, even though the teachers are fine with that, Haley is not fine with that. So, we are back to home schooling today.
She did well with her school work today, in spite of needing Lortab for pain. I let her do an art project also, she painted a lamp, which she loved.

Her transplant team is asking for “exception points” for her PELD score which would move her up higher on the waiting list. I should know something in a couple of weeks.

Love and prayers,
Cheryl

Sunday, August 15, 2004 9:33 AM CDT
Hello friends!

I wrote an update on 8/13, (Friday the 13th, come to think of it), and it disappeared into cyberspace. One of the mysteries of technology, ranking right up there with satellite signals, Tv remotes, and how light comes on just by flicking a switch. I often think how lucky we are that SOMEONE knows how these things work……because I have NO idea.

After losing way too many of these updates, I have started typing into MS Word and pasting onto the website. I have resisted this method for awhile now as I am a spontaneous person, and I hate to think about what I am writing too much.
My husband says I was born without the “filter” between brain and mouth. Sometimes that gets me in trounle, but most of the time I like it that way, keeps my life exciting!
So it is a trade off, I lose a little spontaneity, but I significantly lower the risk of drop kicking my laptop across the room.

Thank you, thank you, thank you, did I say THANK YOU for the letters you all have written, or are writing on Haley’s behalf. WOW! I wish you could see what they all look like, printed out sitting on my desk. I have copies of all of them, and will continue to use them in our fight. I have been a marshmallow all week, reading them. That so many of you, with families and struggles of your own, took the time to write is HUGE to us. I am touched beyond words.

So, how are those people at BCBS you ask? Well, GLAD you asked. I call them every day, know many of them by name, and win or lose, they will remember us and our fight.
Sharon Berry, remember her? She is the legislative liason for BCBS. She called me Thursday and said Haley’s transplant had been “deemed medically necessary”. Okay, good, I guess that means the docs in Atlanta weren’t just telling us that..You never know…maybe they were going to jump out and yell “April Fools, HAHA..we had you going there, didn’t we?” So now that they KNOW that Haley NEEDS a transplant, they are going to try AGAIN to negotiate a contract with the hospital. Why can’t they just do the right thing?

On the transplant front, I spoke with the coordinator on Wed., she said she thought our doctor was going to write a letter asking for exception points for her PELD score. I didn’t know anything about this, so I am not sure if this is true or if she has us mixed up with someone else.
We did receive the “beeper” that we have to carry everywhere. How I dread that call, I can’t even imagine what a wreck we will all be that day, Haley included.

Haley is still doing well, although she has had more symptoms the last few days…GI issues, joint pain, fatigue. We are trying to get some things arranged at school to make things easier for her there. I have a meeting with her teachers Wed morning at 7:45AM. Bruce asked if they were going to come to our bedroom, as that is where I am most mornings at that time. Funny guy.

Our other big news this week is…We are moving!!!!!!!
Only about 20 miles South to Johnson City. Bruce will not be changing jobs, but the kids will be changing schools next year. I am actually going to put them on the waiting list for Providence Academy, a private Christian school.
So, we are BUSY trying to get our house in shape to sell it. What a nightmare! There are so many things to do, and I am so LAZY!!!! OOPs, I meant to say I am so BUSY!!!

One more bit of news before I sign off…Haley has been asked to sing her liver songs at an ALF fundraiser in Tampa next Friday night. We are flying in on Thursday, barring any major hurricanes, and will be back home on Sat. She is very excited. She sang at one in Atlanta last Spring, and it was SO COOL! We all had a wonderful time. So, thanks to the Gulf coast chapter of ALF for inviting us.

Thank you all for the continued prayer support. Our faith in God, and his love for us and Haley ,has never wavered. Our prayer is that He will continue to be golrified in all of this, and all we do will honor Him.

Love and Hugs!
Cheryl and family

Wednesday, August 11, 2004 9:21 AM CDT
I am sitting here with a nasty head cold. Kendall shared hers with me, by way of very wet, but sweet good night kisses. It is amazing to me how a cold can make you feel so lousy. And it drives home, once again, how in awe I am of our CB kids. The adversity they overcome every day is inspiring.

In spite of my cold, the wheels of justice (or in our case, extreme injustice) keep on turning, and I am buried in paperwork.

Soooo, I have a HUGE favor to ask all 16,000+ who have visited this site. CIRCLE THE WAGONS, RALLY THE TROOPS, WATER THE HORSES!!! Okay, I can’t really remember what you do with the horses, but you get the idea. Our family needs your help.

For our stage 2 razzle dazzle grievance to BCBS, we get to appear in person at the hearing. I want to come armed with many letters from irate parents, grandparents, kids, dogs, anybody at all, at the way we have been treated.

I will post below the particulars of Haley’s case, and a model letter.
Also Include
Name: Haley C. Vincent Grievance # 04194001
DOB: 11/5/93
Age: 10
Diagnoses: Autoimmune Hepatitis, Primary Sclerosing Cholangitis, Systemic lupus erythematosus
Other important stuff:
Became ill at 7 years old, has been followed in Atlanta by the transplant team since April of 2002, including 2 complicated hospitalizations totaling 50 days in 2003.
To have manifestations of 2 separate life threatening illnesses at the same time is extremely rare, and to move this child to a facility where the doctors are unfamiliar with her and her very unique history is not only not in her best medical interests, but is unsafe.
In the last three years, Haley has endured 3 ICU stays, 2 of them requiring mechanical ventilation, hepatic encephalopathy, Shingles resulting in urinary retention and catheterization for two months, 2 rounds of chemotherapy to bring lupus into remission, pericardial effusion requiring insertion of a drain in the pericardial space for 6 weeks, bilateral pleural effusions, sciatic nerve involvement causing total paralysis of one foot (now resolved), steroid pulse therapy, 4 liver biopsies, 2 bone marrow biopsies, 3 skin biopsies, and countless MRI's, CT scans, ultrasounds, Iv's and blood draws.
The consulting areas already familiar with Haley in Atlanta include, Rheumatology, Heme/Onc, Nephrology, Urology, Cardiology, Urology, Neurology, PT/OT, and Child Life. And of course, the transplant team who have been following her for almost 3 years now.
You all can add whatever else you feel from your hearts, or nothing else. Whatever you want.

An example letter: To Whom It May Concern:

My name is ____________ and I am a friend of a family insured through Blue Cross Blue Shield of Tennessee. Bruce and Cheryl Vincent, have a daughter, Haley C. Vincent (Grievance # 04194001, DOB: 11/05/1993) who has been diagnosed with not only Autoimmune Hepatitis, but also with Systematic Lupus Erythematosus and Primary Sclerosing Cholangitis. She is a very sick little girl who desperately needs a liver transplant. Haley’s transplant team in Atlanta has followed her since April of 2002.

She was hospitalized twice in 2003, totaling 50 days. In the last three years, during her hospitalizations, she has endured three ICU stays, two of them requiring mechanical ventilation. She has also had to battle Hepatic Encephalopathy, Shingles resulting in Urinary Retention and catheterization for two months, two rounds of chemotherapy to bring her Lupus into remission, Pericardial Effusion requiring the insertion of a drain in the pericardial space for six weeks, Bilateral Pleural effusions, and Sciatic Nerve involvement causing total paralysis of one foot and Steroid Pulse therapy. In addition, Haley has had four liver biopsies, two bone marrow biopsies, three skin biopsies, and countless MRI’s, CT scans, ultrasounds, IV’s and blood draws. Haley and her parents have established a relationship with almost all areas of the team in Atlanta. The consulting teams familiar with Haley in Atlanta include Rheumatology, Hematology/Oncology, Nephrology, Urology, Cardiology, Neurology, Physical and Occupational Therapy, and Child Life. A team of Gastroenterologists and surgeons also follow her.

As you can see, Haley Vincent has gone through more than any child should ever have to. To take her away from her team, that she and her parents know and trust, could possibly endanger her health further. Her team in Atlanta understands not only Haley’s multiple conditions, but also Haley as a person. Her trust in her doctors is sacrosanct, and should not be disturbed.

Please forward my request for Haley to continue treatment in Atlanta to your Stage Two Grievance Committee as the Vincent family has a hearing before this Committee in the near future. My request to your Committee, and to Blue Cross Blue Shield of Tennessee, is that you pay for Haley’s transplant and subsequent treatment as if the hospital in Atlanta were an in-network transplant hospital.

Sincerely,

Now for what you actually came here for…to see how Haley is doing.

She is doing fantastic. She started school on Monday (first time in 2 years!) and was SO proud of herself. She said she felt normal for the first time, in a long time. Go Haley!

Well, thanks for all you do,
With much love and gratitude,
Cheryl

Saturday, August 7, 2004 8:38 AM CDT
Hey everybody,

I am in a major foul mood..or as our friend Sara would say..I am Mrs Grumpypants today. I have a good reason though, I spoke with BCBS yesterday...more on that in a second. First, the family stuff...

Kendall (5) has been diagnosed with alopecia areata. This is a fancy way of saying she has areas of hair loss. Duh! I can SEE that!! They say it is autoimmune. It is being treated, for now with topical steroids..if that doesn't work, she will need injections. On a happier note, she met her kindergarten teacher on Friday, and she is so awesome. I loved her immediately, and I think Kendall will do great with her. She has also known Haley since Haley was in kindergarten, so she is very aware of our strange family circumstances.

Nick (13) came off the med that was making him lose weight, and we started him on a new med (for ADD). It takes about a month to start working, and I am happy to report it is day 10 of the switch, and so far we have successfully refrained from killing him.

Logan (9), is our "low maintainence" kid. I feel like I should make up some trauma for him here, so he won't feel left out. But I won't. He is doing great, starts 4th grade on Monday. Does his chores, doesn't smart off, generally sweet and loving..I am thinking switched at birth maybe?

Haley (10, going on 30) is also doing well. For the first time in 2 years, she will be starting school on Monday with her classmates. She is excited, but VERY nervous. I want this to work so badly for her, she needs a little normalacy in her life. All her labs are stable, I still have a hard time believing she is on the waiting list for a liver transplant!!!

Now, for my phone conversation with BCBS.

"Your appeal has been denied, but you can now file a stage 2 razzle dazzle grievance"

"My grievance hasn't changed, I STILL would like you all to pay for my daughters life saving liver transplant, and let her stay in Atlanta with the doctors who have been treating her extremely rare condition for the last 2 years"

"Yes, but you need to send us that request in the form of a letter. You see we are hoping you will give up or die before we actually have to pay for anything."

"Dealing with you is like dealing with Satan. How do you people sleep at night? You are jeopardizing my daughter's life because of money. If you used all the money you are spending on these appeal hearings and just give it to the hospital, her transplant could be paid for by now."

"Ma'am, I am only trying to help you. And remember you are not being denied benefits, if you switch to a hospital where the doctors don't know a thing about your daughters complicated medical history, and the transplant success rate is much lower, we would be happy to pay for it"

"I am TOTALLY being denied benefits, because if we move her and she doesn't survive, how can I live with that!? Could you, you stupid, stupid b***h."

Well, you get the idea..and believe it or not, that is pretty close to our actual conversation.
She sent me her fax# to send a letter to the committee. If any of you would like to voice your displeasure at our treatment, I am sure she would love to hear from you! Her phone # is 615 386 8587

So, that is enough for today, I am tired now just looking at this.

Remember to visit and pray for our CB friends.
Love and Hugs,
Cheryl

Saturday, July 31, 2004 2:30 PM CDT
Back in TN today! It is very strange having two homes, I don't feel quite "settled"¨ in either place right now!

We moved in over the weekend, and I suppose it went as smoothly as it could. After having been married for 16 years, and owning a home most of that time, I had really forgotten how to do all that renting, connecting of things, you know what I mean. We chose a "gated" community, so that when Haley and I are there alone, we will feel safe. You enter through a swing gate by car after entering a code. However, if you want to leave on foot, like go for a walk for instance, you need a key for the gate. No one gave us that key. My husband and I spent 45 minutes trying to GET OUT of the complex. I started getting really paranoid; it felt like a prison, I started looking for sharpshooters on the rooftops ready to take us out if we tried to go over the fence. We finally did figure out the key part. :)

I know nobody came to hear all this chit chat, you want to hear about Haley, so let¡¦s see¡K¡K..
We saw Dr Romero (who, by the way, will eventually become a Saint). It was a pretty tough talk. I think he spent over an hour with me. He said the listing needed to be a joint decision, and all he can realty do is give us his recommendation whether to list her or not. His recommendation is to list her. He said her PELD (pediatric end-stage liver disease) score would be very low, but that would actually be a good thing because it would give him a chance to "get a handle" on this lupus thing. He did a search on lupus patients that had had liver transplants, and he could find only 3 documented cases. (So instead of Haley being one in a million, she is like one in 250 million). Of those 3 cases, 2 survived the transplants. Scary stuff. Dr Romero also said Haley will not be able to ever come off her immunosuppressants, including the prednisone. Definitely disappointing.

Next Dr Heffron came in and said, in typical surgeon fashion, "I think we should list her, what questions you have for me?" I LOVE his confidence. He also said Atlanta is the center Haley needs to be at. So that is all I need to know about that. I have total faith in both of these doctors. Haley was in and out during this and she did have a couple of questions for Dr Heffron, first she asked if he would take a picture of her old liver, so she could see it (he said yes), then she asked how long she would have to have the NG tube in. He started to tell her what the NG was, and she interrupted him saying, "I KNOW what it is, I just want to know hoe long I will have it in" A little rude maybe, but I think I saw a smile playing at the corners of his mouth. I am not sure this team is prepared for our Haley.
Haley is having pretty extreme anxiety about all of this. I have her an appt with a play therapist. She has become very attached to a stuffed giraffe named MacKenzie. She is never without her, and comes unglued if she can¡¦t find her. This part is all very new to me, and I am not sure how to be a good mom to her....I is still working on figuring it out.
About the insurance stuff¡KI talked with the business administrator, and told him that I didn¡¦t care who caved, the hospital or BCBS, but I had had enough. I had been patient for 4 months, and now I was ready for some action. Either fix it, or just send us a bill. I told him they could have our house, and he assured me they did not want our house! I said all I need to worry about right now is my daughter who has a serious liver disease. I felt bad, because I think I scared him a little, and he really has been very nice to us, but we are running out of time to resolve this.

On another note, Bruce is finally starting t feel better...just in time to have his other kidney done in early September!!

Please check on our other caringbridge friends. Their links are above, especially Aiden who is having his tonsils out on Monday, and just had a penny taken out of his tummy on Friday. He is keeping his parents busy!!! :)

Love,
Cheryl

August 3rd
I posted this at my liver support group last ight, so since I am now officially a computer genious (Right Kristie and Sara) I have "copied and pasted" (please don't try this on your own) so you all can learn about our latest drama, and my latest breakdown.

"Not coping well"
This month, Haley was listed, her doctor told me he could only find 3 other documented cases of her type EVER, my husband had surgery, we split our household to live part time in Atlanta, my 13 year old son is losing weight because he can't swallow solid food (a side effect of a med we have discovered,
and now...drum roll please....Kendall's hair is falling out.
Yes, you heard me right HER HAIR IS FALLING OUT!!! All along the hairline above the ears, about 3-4 inches back. If you put her hair in a ponytail, she would look like one of those suma wrestlers with the shaved head except the big ponytail.
This one isn't even genetically related to us, so I can't even blame my genes.

She sees a derm on Wed, we think she is going to have to get steroid injections around her hairline. That is probably the best case scenario. The worst prognosis for this type of "alopecia" is when it starts around the hairline, and when it starts young. Check and Check.
My sweet little girl who starts kindergarten in 6 days may soon be completely bald.

Tonight I feel like the lady in a movie I saw sje said sweetly "I always say, when life hands you lemons, make lemonade", The other lady turns to her and says "Well life handed me a sack of s**t, what should I make?" Ever feel that way?

Of course I don't really feel like that, I am incredibly blessed with a loving husband who has a great job , four incredibly beautiful and talented children...but every once in a while I just want a little vacation from my life.

I'll let you guys know what the doc says on Wed.
Thanks for listening.

Cheryl, Haley's mom AIH/PSC and SLE age 10
Listed for tx

Thursday, July 22, 2004 8:11 PM CDT
Something strange is going on with my computer, it keeps "eating" my updates. So this one will be short and sweet...hopefully posted quicly before it can be gobbled up into cyber space!!

Bruce had surgery last week. Either it was the most painful surgery known to mankind, or I have unwittingly married a major wimp! :) He spent 2 days in the hospital with a morphine PCA, and now is at home being waited on hand and foot by his doting wife.

Tomorrow is moving day!!! We have our place in Atlanta and will be leaving at 7am to move our things in. Many thanks to our friends who donated things for the apartment and helped us pack the truck. Bruce was especially grateful. :)

Haley is doing fair, she has been running a fever with a cough and is being treated prophalactically for pneumonia. If her symptoms aren't better tomorrow, I will take her to the clinic in Atlanta.

We see the surgeon and get the "psych eval" on Wed. Any bets on whether they will find our family mentally healthy enough for transplant? Is anybody?

Off I go now before I lose this one too.
Love and Hugs, Cheryl
Ps..Thanks Kristie and Sara for the "Links tips". They were really helpful.

Tuesday, July 13, 2004 9:16 PM CDT
Hi everybody,
We got back from Atlanta today. It was a whirlwind trip. We arrived at 9pm Sunday, and left at 9am Tuesday!
We accomplished quite a bit in such a short period of time though. We rented an apartment and arranged to have our utilities turned on. I wasn't able to get my license yet, but I will do that next time.
We had two "firsts" this trip. My best friend came with Haley and I, so we desided to make it a true road trip. Our first adventure was eating at a "Waffle House", I had never eaten at one and now I know why. At the risk of offending any Waffle house lovers, it will be the last time I eat at one also! Our second "first" was eating at a "Hooters". Much to my surprise, I enjoyed myself immensely. The food was above average, the waitress was super nice (even posing for a picture with Haley), and the atmosphere was more family oriented than I would have imagined. They even had a kids menu and crayons.

Okay, on to important stuff! Thanks to all who contacted State Representative Nathan Vaughn on our behalf. He has been in touch with BCBS, and seems to have really taken an interest in our dilemma. At this point, if you choose to contact him again, please express gratitude to him for interceding. We are not expecting miracles, but the insurance company has until August 11th to review our grievance. We meet with our attorney thursday at 3pm.

Haley continues to be very stable medically. Seems like the closer we get to transplant, the better she gets! She has appt's with the transplant surgeon, and medical doctor on July 28th. My understanding is the listing process will be finished at that time.

Please continue to pray for our CB friends,
"Sara"
"Kendrie"

Thursday, July 8, 2004 11:34 AM CDT
Hey everyone!

We are visiting a lawyer this evening to discuss our "legal options" as far as our insurance coverage is concerned.
I don't want to give BCBS the satisfaction of us giving up without a HUGE fight. We have also contacted our local congressman, Nathan Vaughn, to ask him to intercede for us. Any Kingsport residents reading this, please feel free to call or email Mr Vaughn with your support of his coming to our aid.
Nathan Vaughn (D-TN) Tennessee House District 2
Capitol Address
Representative Nathan Vaughn
109 War Memorial Building
Nashville, TN 37311
Phone: (615) 741-6867
Fax:
District Address
Representative Nathan Vaughn
1046 Catawba St.
Kingsport, 37660
Phone:246-1739 or 1800 449 8366 ext 16867
Fax:

Email: rep.nathan.vaughn@legislature.state.tn.us
Web site: http://www.legislature.state.tn.us/house/members/h2.htm

On the medical front, Haley has some weird lab stuff..low WBC, high platelets, low Hgb,...and without violating her privacy too much, she has evidence of lower GI bleeding. So, all of that will be re checked tomorrow.

As always, we love you guys! And say some special prayers for our other caringbridge friends...one day I will learn how to put links on this site, and you can visit all the special kids here we have grown to know and love. But for now, please especially remember, Cheyenne, Celeste, Katia, Kendrie, Casie, Sara, Connor, Kody, and Steven.

Hugs!
Cheryl

Monday, July 5, 2004 7:24 PM CDT
I could really live at the beach. It is sooo relaxing for me. I cannot even put into words how I look forward to that week away. It is like I put anything unpleasant on hold, and just enjoy God's beautiful creation, and my family. And nothing else matters...for a week at least.

The CLASS picnic was amazing. What special people these "liver kids" and their moms (and dads) are. I am so honored to be a small part of this group. The transplant surgeon from Shands came and gave a talk, as did an immunology expert. And, of course, our own Haley opened the event with "The Dirty Rotten Liver Blues". A couple of the moms worked really hard to make each day fun filled and FREE.

After 3 days in Florida, we drove to Jekyll Island where we rented a beach house for a week. Haley had a great week, virtually symptom free. The other kids had a blast as well.
Even the long drives weren't too bad. Before our trip, I had a DVD player put in the car to make it less likely that any child would be thrown from the car by an irate parent. And then, after going to all that trouble, I forgot all the DVD's except 2. So, if anyone wants to know the dialogue, verbatim, to "Shrek", or "Cat in the Hat", I am the go-to gal!

My nasty little boys managed to amuse themselves for hours by playing "doorknob". For those of you civilized folks who don't know how to play, I will explain it the best I can. When someone is preparing to pass gas, they yell out "Doorknob", if said gas escapes before "Doorknob" is said, the Pass-er has to touch a doorknob before someone else yells "safety" or he can be punched. I found myself actually judging this game (since, of course I don't pass gas) and saying things like "Only (fill in the blank) knows when the gas has finished passing". How sick is that? We are ALL freaks! I can't believe I am even writing about this...okay enough of that.

Medical news:
Our latest insurance appeal has been denied. Bruce and I are seeing a lawyer this week, and we are getting legally separated. We will have joint custody of the kids, and I will be getting an apartment in Atlanta. Hopefully, we will then be eligible for GA medicaid and/or Katie Beckett. I also asked the Kiwanis about the status of our application...seems it has been misplaced.
We will meet with the transplant team doctors on 7/28 and complete the listing process. It's hard to believe all of this is actually happening. But it is, and we continue to hold onto God's strength and hope and promise.

"Worrying doesn't take away tommorrow's problems, it only saps us of today's strength"

As always, thanks to all who check on us...we would love you to take a minute and sign our guestbook, Haley checks it every day and is thrilled to hear from old friends and new ones.
Many Hugs!!
Cheryl

Wednesday, June 23, 2004 8:10 AM CDT
Just a quick update as we are leaving town today for 10 days!!! And I have the made the conscious, yet stangely difficult, decision to leave my computer at home.
First, we will drive to Clearwater (only 14 hours in a car with 4 kids, and a drugged husband....more about that later)
for the CLASS picnic. CLASS is a group of "liver moms and their kids, really wonderful, supportive people, who have become family to us through all of this.
After 3 days there, we will drive to Jekyll Island where we have rented a beach house for a week.
Back to my drugged husband...long story shory...blood in his urine...IVP yesterday...blocked ureter....having a stent placed this morning. But he can travel, I just have to drive.
Haley is doing well, no real news there.
I will update as soon as we get back.
Hugs!
Cheryl

Wednesday, June 16, 2004 5:44 PM CDT
Well, we finally got the call with the biopsy results. Not the news we were hoping for. Both the face and the stomach sites were "consistent with lupus". I hadn't even realized how much I was hoping for it not to show lupus. After all, she had a "lupus flare" last summer, so it is not like we hadn't known about this. But she was so atypical, that the doctors always gave us hope that the flare was either drug (Remicade) induced or a strange presentation of the autoimmune hepatitis. Now we know. I have to give up my very comfortable blanket of denial. So, I am sad. I may just need a really good cry. :)

The derm doctor who called said Dr Romero (GI transplant) was notified and he wanted to talk with Dr Vogler(Rheum) before he calls us. I am sure they will discuss her transplant status. So, now I am waiting to hear from him.

Overall, Haley looks better. The rash is slowly (very slowly!) fading, and her pain is less.

Thank you for continuing to love us and pray for us.
Cheryl

Saturday, June 12, 2004 3:22 PM CDT
I can't believe how fast this last week has flown by. I wanted to update sooner, but every day I've been in such a strange mood , I thought I might depress everyone!!

I am feeling better today though, I recieved an email from our Atlanta GI, so it was nice to know we hadn't been totally forgotten. He increased her prednisone to 10mg a day. Yipee! :(
Haley's rash is still there and fairly impressive, although there has been some improvement. The path report on the biopsies are still not back.....what in the world do they do to those microscopic peices of skin that the results take 2 weeks to come back!? She still has low grade temps and lots of pain. We have been avoiding crowds until we have a diagnosis.
We did go to the very early show this morning (hoping to avoid that crowd!) of Harry Potter. We had a really good time. It wasn't nearly as scary as I was afraid it would be...I was so reluctant to bring Haley's 5 year old sister, Kendall, but she loved it. She loved it from the safety of my lap, but she still loved it.
After a nutritious lunch of movie popcorn and peanut M&M's, I took the girls to "Justice", Haley's favorite store and bought her a purple "H" pillow for her room.
We haven't heard about our appeal to the insurance company, I have to call them on Monday to light that fire again under their you know whats!! Darn fire just keeps going out.

Some friends of my dads in Colorado are giving a big yard sale this weekend with 50f the proceeds to benefit Haley's Liver Fund. People are so very kind, we are truly blessed.
Also, we have opened an account for Haley with the American Liver Foundation. Information will be on the home page of this site.
Thanks to all who have signed the guestbook, we LOVE reading it every day...you guys are the best!!!
Hugs!
Cheryl

Friday, June 4, 2004 9:54 AM CDT
My challenge for this journal entry will be to include all that has happened this week, but not write so much that people nod off in the middle! Sometimes it is hard to edit my life down, and I have been known to occasionally go off on tangents. I know that surprises those of you who really know me (haha), but I have been known to have a strong opinion or two. Bruce told me the other day that I reminded him of a pineapple...sweet on the inside, but a little prickly on the outside.
We arrived in Atlanta late Tuesday night. The kids were actually great on the trip..I don't even have a good "he's touching me" story.
Wednesday morning at 9 am, we met with Dr Romero. His biggest concern was Haley's rash. He was worried that it was a lupus flare, and the words never spoken, but heavy in the air were, if she is having an active lupus flare she will not be listed for transplant.
Next we saw Dr Vogler (rheumatologist) at 11 am, he was over all happy with her appearance, he thought her joints looked better, and her pain was being better controlled.

A quick lunch later, we were at the dermatology clinic and saw Dr Spraker (who is one of the nicest doctors ever!). She felt like Haley had 2 different rashes going on. Nothing ordinary for MY girl. Dr Spraker told Haley "You are making me really think" and Haley said, "Yes, I am famous for that". It made me laugh...and it is so true, she has been a medical mystery for 3 years now. So, they did 2 biopsies, one from her jawline, and one from her stomach. She was pretty freaked out at first, but she settled down, and took it like a trooper. If the facial rash comes back as lupus, we will know for sure that she has lupus. (There has always been some question and debate between doctors about how much symptomotology is liver disease and how much is something else). It is very rare for someone to have manifestations of both AIH and lupus...one in a million is what Dr Romero told us. So, maybe we will finally have an answer.
It was 5:30 pm before we got back to our hotel, and we were exhausted...but did that stop us?? NO!!! Not the gluttons for punishment Vincents! We packed all 4 kids in the minivan and headed off into the rush hour Atlanta traffic for a Braves game! Besides the pounding migraine, and the 5 year old in my lap whining "Why did you bring me here?", AND the fact that all the Braves we knew were injured and they were beaten badly by the Expos...we had a good time (she said with gritted teeth). I am kidding, I love the Braves, it was just a long, stressful day.
Now, on the the financial end of things. Our insurance company, BCBS of TN, has refused to pay more than $130,000.00 for Haley's transplant. The average cost is 313,000.00. We have to find another way to pay for the rest.
God has sent us some wonderful angels (You know who you are, and so do I!)to help us fundraise. We live in such a generous community,we have so many friends who love us, near and far, we are truly blessed in so many ways.
We have opened an account with the American Liver Foundation, so donations are now tax deductible. I am writing an appeal letter today to the insurance company, and we are applying for a grant from the local Kiwanas Club.
So, it will all work out.
I hope I remembered everything.
I love you guys so much, thanks for loving and caring, supporting and praying, and the so many other things you do for us.
Love, Cheryl

Friday, May 21, 2004 11:02 AM CDT
Haley has been having an earache the last couple of days. Bruce looked at Haley's ear, said it was "dull", but not infected.
Still running low grade temps, and lots of pain. She says she always hurts, it is just whether she hurts "bad" or "really bad". But she still manages to do her schoolwork and have a few hours of feeling good enough to play every day. That is a blessing, I remember the days she hurt so bad, she could not even walk! I just pray that the transplant cures the pain also. I don't think anyone knows if a new liver will stop the joint pain.
Her new symptom, as of yesterday, is a rash. Fairly impressive, face, neck, chest, back, and arms. Bruce thinks it looks like coxsackie (sp?), so we decided to keep her home and not subject anyone else to it. If it gets worse, we will bring her to weekend clinic tomorrow. I am going to call her doctor later for more Lortab, I don't think we will make it through the weekend with what we have. The increased Prevacid is helping, I think some of her nausea may be related to the pain meds.
Hugs,
Cheryl

Tuesday, May 18, 2004 2:41 PM CDT
Okay, After my headache tizzy fit, I hate to even say where I am writing this from. But I won't keep you in suspense.
I am in my bed (again) this time with a heating pad for my bruised and twisted back. I guess it matches my twisted thinking. :) I did something very unpleasant to my back this weekend that involved a 40lb bag of potting soil. I am not resorting to stealing my daughters pain pills this time though, I am toughing it out with my heating pad, and comfort food like nobody's business. Oreos, bananas and red licorice all within easy reach!
About my last journal entry, Haley read it, looked at me with raised eyebrows, and said, "You called me a freak." So for Haley, and anyone else who may be considering reporting me to DCS, I meant it as a TOTAL term of endearment, I love every freakish hair on their little heads. :)

Anyway, I don't have lots to update, but thought since I am basically "homemaker" useless, I might as well take this time to journal something. And speaking of my lack of homemaking skills, my 13 year old has agreed to make dinner for us tonight, We will be dining on mac and cheese and popcorn shrimp. Pray for us.

So on to Haley....Our good day/bad day dance continues. She has been having low grade temps up to 101 for about a month now, but her infammatory labs all look good. LOTS of joint pain. She is requiring Lortab daily, and morphine on really bad days. Still nauseated alot, and we have increased her Prevacid to 30mgs. Her Prograf level is perfect (finally!) at 9.2. Her fatigue is profound, and her stamina is poor, although she can do a backflip on the trampoline. (Once again, I hope her doctors aren't reading this). However, walking from room to room makes her short of breath.
Still no news on the insurance front...maybe Blue Cross has decided, in their infinite wisdom, that Haley doesn't really need a transplant. Ooohh That sounded bitter. Sorry.

We go to Atlanta to see all her docs on 6/2. We will also be taking our whole family to a Braves game that night, the tickets were Logan's birthday present. He turned 9 last week.
Please remember our new lupus friend, Kelly in prayer. She is having a very hard time this week.
Love and Hugs,
Cheryl

Saturday, May 15, 2004 11:50 AM CDT
You are all cordially invited to my pity party!!!
Actually not so much a pity party as a mild nervous breakdown party!
A few days ago, I got a headache. Not just a headache, but a Please somebody get a gun and put me out of my misery headache. And I wasn't allowed to just have the headache, NOOOOO, I had 4 screaming, fighting, drum set playing children in the house with me. So what did I do? What any mother-of-the-year candidate would do, of course. I yelled at the top of my lungs,stomped my feet and expected my children to all feel sorry for me. Well my kids (the little freaks) thought this was the coolest thing in the world..."look at mommy, she is really losing it " and they all clamored to be the one who got mommy something she "really needed"...Haley won the contest, she brought me a "Do not disturb" sign for my door...although Kendalls idea of several dandelions pulled from our yard was nice too. :)
I pilfered several of Haley's Lortabs (I hope none of her doctors read this) and locked myself in my room (with my do not disturb sign on my door), got sufficiently drugged, ate peanut butter and honey sandwiches and watched several hours of Friends on DVD. I can't tell you how much better I felt. Why don't doctors prescribe useful things like that?
Now, My friend lisa thinks I must be pregnant, because no one who wasn't in the throes of a hormone imbalance would eat peanut butter and honey together...so for anyone else who thinks that...NO! NO! NO! I have had a tubal..I mean come on, I have FOUR kids! And by the way Lisa, I called you the other day and you were eating grits...yes grits, that wonderful food that has the consistency of cow puke!!
And speaking of puke, (what a great segway), Haley threw up at Chik fil a the other day, while she was eating. Everyone thought she was choking so they called mall security and while all of this is going on, my mom is handing out her imformation cards.."Yes, this is why my granddaughter is barfing in public, she needs a liver transplant". Are we abnormal or what?
I wonder what tomorrow will bring? :)
Cheryl

Tuesday, May 11, 2004 7:40 PM CDT
No news on the insurance front yet. We have been told by the "higher ups" at the hospital that they are trying very hard to resolve the issue. For some reason, Blue cross Blue Shield is being very stubborn. I don't understand why common sense cannot just prevail here! If everyone involved would be concerned ONLY with Haley's best interests, and not money, things could be settled very quickly. What is wrong with these people?!
But, I am not worried, a little frustrated maybe, but not worried. God has always provided for this family, and He always will.

Haley has been feeling poorly lately. Seems like every day brings a new symptom or pain. Mostly we are dealing with fevers, joint pain, stomach cramps, nausea, and itching. Although, her labs are really good lately. Go figure. Her Prograf level was a little too high this week - 14.2 - so her Prograf has been lowered to 2 mg BID. We next go to Atlanta 6/2.

The Spring festival was a big success! It humbles us so much to see so many people working so hard for us. Over $4000.00 was raised. And then this weekend after Haley sang "Sarah's song" at church, a love offering was taken up for us (much to our surprise, we had no idea!) and over $20,000.00 was raised. We were (still are) completely overwhelmed. We are so very blessed in so many ways.

Love and Hugs,
Cheryl

Wednesday, April 28, 2004 12:45 AM CDT
Her everybody!
I have put this off somewhat, because our lives feel in limbo right now. Lots of stress, no real answers!

I'll start with the medical part of all this.
Haley had her transplant evaluation 2 weeks ago. Notably, her AIH has progressed to PSC, a more aggressive and less treatable liver disease. Her bile duct showed proliferative disease and her liver was shrunken and cirrhotic. We met with the transplant surgeon and team, and the decision was made to place her on the waiting list for a liver.
Just in the last 2 weeks, she has become much more "symptomatic", fatigue, joint pain, stomachaches, nausea,itching...etc. Of course this is interspersed with wrestling with her dad, jumping on the trampoline, and sleeping over at friends houses. What a dichotomy! I never know which Haley I will be dealing with!

We, naturally, though it would take a week or so to get her listed. Ha! Our insurance carrier, Blue Cross Blue Sheild of TN, has decided that Atlanta is not a "Blue Quality" hospital. They have been paying for us to see a Hepatologist there for the last 2 years, so this makes no sense to us at all. There are 5 hospitals in the country where they will pay for a transplant. They are all further away from us than Atlanta, and none of them have the same high survival rates that Atlanta does. I am sure they are good hospitals and good doctors, but for many reasons, it is obviously not in Haley's best interest to move her.

Soooo what are our options at this point?
1. The insurance will agree to pay the hospital. (Not holding my breath)

2. We agree to pay anything over $130,000.00... this would mean having the transplant, and declaring bankruptcy sometime after as that is not even a fraction of what we need.

3. Moving to GA and trying to get under the umbrella of the "Katie Beckett" program.

4. Divorcing (I am not kidding) and my income would then be alimony only, and we would qualify for GA medicaid. (We would still have to move)

5. Bruce quitting his job and finding a new job with new insurance.

6. Raising enough money that we can negotiate a private contract with the hospital, much the same way the insurance companies do.

And speaking of raising money, we are having a Spring Carnival at Kingsport Community Church on Sat, May 8th. There will be a rummage sale, bakd sale, breakfast and lunch, kiddie games, a dunking booth, moonwalk, cotton candy, snow cones, popcorn, and (we hope) pony rides. Many angels here on earth are organizing and running this. If you live here, please try to come!

Haley sang at the American Liver Foundations, "A Flavor of Atlanta" fundraiser last week, and she was amazing! She sang her "liver songs", and the audience went crazy! It was beyond anything I could have imagined. It was an experience of a lifetime.

She will be singing at our church (Celebration) on Mothers Day weekend. I hope she can sing her newest original song..."Sarah's song". It is so appropriate for church and for what our family is going through right now.

As always, many thanks for your love, support, and prayers.
Cheryl

Wednesday, April 14, 2004 4:27 PM CDT
I know I promised a daily update, but I could not get to a computer yesterday, and I was soooo very tired after 2 very long, emotionally exhausting days!

We drove to Atlanta Monday night after Bruce got home from work, and we found out en route that our doctor wanted us to go directly to the hospital for labs. To make a long, painful story short, we settled into our hotel room at about 2:30am, with a 5:00am wake up call for the procedure. It was more a nap that a night's sleep! But Haley was a trooper and we drug ourselves off to the hospital.
Once there, everything went smoothly. Dr Romero came out to the waiting room and told us her liver was "small" on ultrasound. We knew that wasn't good.
While waiting for the biopsy results, Dr Heffron (surgeon) and the transplant team asked to speak with us in a conference room. Dr Heffron said Haley's liver could last 3 more years max. He said if it was his child, he would do the transplant now. He said the best outcomes happen when the kids are healthy going in. All of this without even knowing the biopsy results.
The biopsy showed severe cirrhosis, mild ongoing inflammation, and her AIH progressing into PSC. At this point, there was no question she would need to be listed, as PSC really doesn't respond to treatment.
They are going to decrease her steroid and her other immunosuppression, and basically stop trying to control her liver numbers with drugs.
We also had an ultrasound, echo, ekg, cxr...all the stuff she needs to be listed. We have to go back for liver clinic next Wed., and we may recieve her PELD score at that time. We asked about living related donation, and Dr Heffron wasn't ready to pursue that, he doesn't feel like she will have to wait that long for a liver. We also discussed transportation, and they will send a plane for us when she gets "the call".
So, we are trying to digest all of this! It feels very surreal right now, like it won't really ever happen!
One thing that is a great source of comfort to us is the incredible team of people that are caring for her. She is in the best possible hands.
Thanks for your continued prayers. We know that God loves Haley even more than we do. His love is so great, we cannot comprehend the scope of it. And that is enough to keep us going.

Hugs,
Cheryl

Sunday, April 11, 2004 5:25 PM CDT
Tomorrow we leave for Atlanta. I have some very mixed feelings. I won't be surprised if they say, no she isn't ready to be listed, or if they say, she needs to be listed right away. So, I guess I am prepared for anything, and wary of everything!

I will post on this caringbridge website daily while we are in the hospital, so you will all get the news as we do! That is, as long as I can get computer access in the hospital, it shouldn't be a problem, but you never know!

Haley is feeling great, some pain...but nothing she can't handle. We had our pastor and his family over for Easter lunch, and it was a really fun, joyous day. Everyone had a good time, and we focused on family and fellowship and God's wonderful gift to us. We really are blessed in so many ways, God is awesome!

Our schedule for Atlanta is
Tuesday.....Liver biopsy
Wednesday....Ultrasoound and echo
Thursday....Consutls with Dr Heffron (transplant), Dr Warshaw (kidney) and Dr Vogler (sle)
Friday.....Discharge and Atlanta Braves game!!!! We also hope to spend that afternoon with our good friend Sarah (and her family) who had her liver tx on St Patricks Day and is home now!! yea Sarah!!!

Thanks everybody for your love and support, it means everything to us!

Bruce, Cheryl, Nick, haley, Logan, and Kendall

Wednesday, March 31, 2004 4:09 PM CST
We recieved lab results today. The enzymes were slightly improved, but still high.
Atlanta emailed me today with a plan (be careful what you wish for!). She will be admitted the week of April 12th, not sure what day yet. The first day she will have a liver biopsy, the second day she will have US and echo and meet formally with Dr Heffron (the transplant surgeon). After all this information is gathered, and Dr Heffron assesses her, the decision will be made whether to place her on the transplant waiting list.

We are still a little bit in shock, it seems like it is all happening so fast! Next week is Spring break, and I am going to try to just have a fun low key week with the kids.

On another topic, our fundraising group is having a "Spring Festival" at Kingsport Community Church on Sat. May 8th. There will be a rummage/bake sale, dunk tank, moonwalk, kiddie games...lots of other stuff. It sounds like alot of fun!
Hugs,
Cheryl

Tuesday, March 23, 2004 4:25 PM CST
Haley's labs have been trending up for awhile now, even with therapeutic prograf levels, so the team in Atlanta emailed me today with their plan.
They will do one more set of labs on Monday. If still high, she will be admitted to the hospital in Atlanta for 3 days. They will do a biopsy, and consult with the transplant surgeon, nephrologist, and rheumatologist (lupus guy.)
He (the GI doctor) said he
felt her transplant status should be reevaluated. He is leaning towards listing her.

It is very hard to know what to feel. She looks as good as she has in a really long time. But I have to remember that she got encephalopathic last summer with an ammonia of 200, and at that time they said she needed a transplant, but she wouldn't survive the surgery because of the fluid around her heart and lungs from the lupus flare. Now that the lupus is under good control, maybe now is the time to do it.

We are at a very scary place right now and ask all of you to pray for us!
Love, Cheryl

Monday, March 8, 2004 1:05 PM CST
I can't believe it has been so long since I have updated here. There is always so much going on, I guess I am always waiting on that next bit of news!
We were in Atlanta all last week, and we got pretty mixed messages. I have been trying to digest it all and figure out what everybody really said!
I will start with the good news..the kidney doctor feels that there is no active kidney disease right now, just the stones. However, he did not review Haley's record before we saw him, so I am not sure we got as thorough an opinion as I would have liked...especially with her complicated history. But, I also know all her "usual" docs are keeping a close eye on her kidney numbers and won't let anything get out of control. He put her on a low calcium, low salt diet. No more ice cream or chips!
Her liver doctor said if her liver numbers are elevated with the next lab draw, he will schedule her for a liver biopsy. Then if the biopsy shows "active" cirrhosis, he would start the evaluation process to place her on the waiting list for transplant. If her numbers are trending back down, he will wait until they are elevated again.
Physically, she feels quite well. She is very active, her joint pain has been better. Her biggest complaint is itching. In fact, she was unable to sleep most of last night from all of the itching.
We were able to visit with some of our other "Atlanta friends", Jen, Jon, and Sarah. I hate that any other children are sick with liver disease, but what a great network of support these moms are. And what truly special kids!
Thank you all for your love and prayers. We feel very loved!
And thanks for signing Haley's guestbook, she loves reading it.
Hugs,
Cheryl

Wednesday, February 18, 2004 12:30 AM CST
Haley's liver enzymes and PT have been slowing climbing for the last 6 weeks or so. As her numbers go up, the lab draws have gotten closer together. This week her #'s jumped 50 points in 3 days!
Our doctor here and the one in Atlanta are deciding whether to do a liver biopsy.
To complicate matters, she is having kidney stones again...she had to have morphine last night and again this morning. At least we avoided the germ-laden ER!
On a happier note, we were interviewed this morning on the radio again, they played Haley's songs! They gave us a great opportunity to talk about pediatric liver disease and organ donation. Janet, who interviewed me was so sweet, and Kim Kennedy, who works at Mountain Region Donor Services, came and gave me wonderful moral support.
Don't forget the Spaghetti dinner and Silent Auction coming up Friday night, 6:30 PM at Christ Fellowship Church.
And Haley will be singing Sunday Feb 28th at Bethel Presbyterian. It makes my heart sing to hear her lifting her voice and her praises to God.
We had a wondeful surprise yesterday, Aiden our sweet "liver friend", who is by the way doing fantastic(!!:0) sent Haley a box of goodies for Valentine's Day...including a baseball signed by Greg Maddux. She was beside herself...I think Aiden's mom's original intent may have been to donate it for the silent auction, but Haley is not parting with it..it is too special! So thank you Lisa, Joey and Aiden...you made Haley's year!
Thanks to all of you who continue to sign Haley's guestbook, she loves to read it.
Will update again soon.
Hugs! Cheryl

Friday, February 13, 2004 8:54 PM CST
Haley's liver numbers are trending upward again. The last 3 lab draws they have been steadily climbing. PT is up as well. We don't want to increase her steroids any more, so they are upping her Prograf. We will recheck labs on Monday.

On a happier note, Haley is hosting a slumber party tonight. There are 5 little girls in our home right now! Haley has decorated and we have made all kinds of litle treats, and from the sounds of things, they are having a blast!!!

Homeschooling is going really well, Haley is so bright, she makes my job as her teacher very easy! She is even starting to enjoy Math.

We have gotten lots of positive feedback from her "Billy Rubin" CD, I still have some available...just email me if you want one.

Haley and I are starting to do some volunteer work with Moutain Region Donor Services. I am being interviewed next week for AM Tricities, and doing an expo next weekend.
Also, Haley's Spaghetti Dinner and Silent Auction are Friday the 20th at 6:30. All are invited.
Hugs!!
Cheryl

Tuesday, January 20, 2004 12:38 AM CST
Hey everybody!
We are still doing the "Prograf dance". Last week her level was 14.6, today it is 4.9. Hmmmmm.
Also liver enzymes are up again this week. It's always something :)
If all stays relatively stable, we will go back to Atlanta for doctor visits early March. We have an appt. with the kidney specialist then too.
Haley's new CD is done and available. Email me if you want a copy. Her new song may be on this site soon...have to see if our computer friend can get it done. I am not computer savvy enough to do it myself. :)
However, I did post some new pictures recently (of Haley's new room) and was quite proud of myself for being able to do that. :)

Hugs!

Cheryl

**In order to save the songs listed below in the "LINKS" Section, right click on the link file, select "Save Target As" and select a place on your C: drive to store the song.

Monday, January 5, 2004 2:52 PM CST
Haley's CT scan was today. It showed 4 kidney stones, 2 in each kidney. The good news is this is probably not lupus related, the bad news is she will eventually have to pass these stones and they hurt!!!
Her local doctor wants us to see a nephrologist (kidney specialist) in Atlanta. We are going to try and see him during our scheduled clinic appts in early March.
Labs again on Wednesday. Will keep you posted!

Wednesday, December 31, 2003 2:38 PM CST
Happy New Years Eve! I can hardle believe it is the last day of 2003.
And we are ending it the same way we started....doctors visits, lab work, strange symptoms, lots of questions, few answers! Do I sound frustrated??
We spent Sunday morning in the ER with Haley having side pain and gross hematuria (lots of blood in urine). Her urine was also positive for bacteria, and more concerning, protein. Protein in the urine can signify inflammation of the kidneys due to lupus activity.
So, right now, no real answers. We saw the doctor today, and had lots of urine and blood tests done. But, if Haley stays true to form, the final diagnosis will not be easy to come by.
In the meantime, they are increasing her Prograf to 4mg BID, which takes the cost of that med to nearly $1000.00 per month. These med costs are getting out of control. We spend more on medicine than our mortgage!
I will post again when I have some lab results.

Thursday, December 18, 2003 6:10 PM CST
We are back from a whirlwind visit to Atlanta. We saw Dr Romero on Monday, Dr Vogler and Dr Healy on Tuesday and drove home Wednesday in time for Haley to sing in the Christmas program at church. She was, of course, amazing (says her proud mommy).
She had lab work done last Friday, and her liver numbers are elevated again. Even her PT/PTT are up again. :( Her prograf level is low at 6.6 which possibly explains why the numbers are up again. Unfortunately, that means we can't go down on the prednisone any more right now. I really want her off it, so she can have a chance to grow. It was sad for me to see her on stage with all those other girls her age, and she was so tiny. She hasn't grown at all in over 2 years now.
I made that clear to Dr Romero, but he stood his ground, he said he understood how I felt, but he would NOT be weaning her especially at Christmas when he wouild be out of town. I trust him to always have Haley's best interests at heart....So we keep our fingers crossed that the 12/26 labs will be better.
They want to see her again in 2 months. Yea!! 2 months at home!!!
We got to see our special friends Sarah and Anna and their parents. It is always a treat for us to spend time with them.
CD news: Haley records Billy Rubin on 12/29. Huge apologies to those of you waiting on CD's...technical difficulties all over the place with this one. But I think it will be worth waiting for. For those of you who want a CD, they are free for the asking...a gift with the hopes of raising awareness of pediatric liver disease and organ donation. Just send me an email and I will send you one.
I will post again after Christmas with Haley's labs...
Until then...Happy Holidays from our home to yours...May the true Spirit of the season bless you all.

**To Hear Haley's Song "DIRTY ROTTEN LIVER BLUES" click the link below**

Tuesday, November 25, 2003 9:42 AM CST
Thought I would take a moment to update.
Medically, Haley is doing well. Her Prograf level is stable at around 9. Other labs are pretty good also. Still has a fair amount of joint pain, but we manage it with medication and hot baths!

Yesterday, Haley was featured on the morning show of a local radio station, WTFM. They called it Haley Vincent day and they played her song many times. Haley and I were both interviewed on air, and she did such a great job. She even sang some, right there without any music! It was so much fun to hear her singing on the radio and to listen to the comments of all the people calling in. We raised over $1500.00. And we raised awareness of pediatric liver disease in the process...so a great success all around!

Trading Spaces will NOT be doing Haley's room, they just could not give us the time with the designer we wanted Haley to have. It is nobodys fault and we have absolutely no hard feelings, it just didn't work out. So, Bruce and I are designing and redoing her room, we hope to "unveil" it on Christmas morning. Her new wish, I believe, is going to be to visit NYC, and see The Lion King on Broadway and visit The American Girl doll place.

Today, we go back to the recording studio to record "Billy Rubin is my friend". Those of you with "liver kids" will totally get that, the rest of you are probably scratching your heads! So...bilirubin is a byproduct that the liver gets rid of, if the liver doesn't function, the bilirubin level rises. Bilirubin is what causes the skin to turn yellow. Haley though it sounded like someone's name...and the rest, as they say...became a hit single!!!

Thanksgiving blessing to you all,
Cheryl

**Hear Haley's SMASH HIT!**
Dirty Rotten Liver Blues

***Warning 1 MB file***

Sunday, November 9, 2003 6:40 PM CST
Well since the last update, my little girl has turned 10!!
AND...Trading Spaces contacted us and will be coming to do Haley's bedroom in early December. We are all sooo excited!!
We have all our clinic visits in Atlanta Dec. 15th and 16th, so we are hoping they are coming before that.

Another exciting event, Haley will be singing a solo at our church (Celebration Church) on Wed. night Dec. 17th. The song is "Not that far from Bethlehem" and she sings it like an angel. Not that I am biased at all. :)

Now for the medical stuff. Haley's prograf level was 3. Which is way too low. So we have had to increase her to 3mg twice a day. This med is so expensive!! This one drug was $400.00 a month, and now it will be $650.00. Ouch!! But Haley is doing well, and that is all that matters. It is good to see her more like her old self. She is still having joint pain, and pain meds have become a standard part of our day, but at least her liver, heart and lungs are working!!

Stay tuned for our fundraising events...Walmart table in November, Applebees Breakfast in Jan., Silent Auction/Spaghetti dinner in Feb., Easter Musical in March.

Hugs to you all,
Cheryl

Listen to Haley's New Song
Dirty Rotten Liver Blues

Sunday, October 19, 2003 6:13 PM CDT
We got home from Atlanta yesterday...it was a long week!
Monday, she had labs done, and everything was improved. They were hoping the enzyme jump was a hepatitis caused from her immunosuppressant (Purinethol). But her levels came back okay, so it was decided that the lab changes were due to new autoimmune activity.
Because her liver has so little reserve, they have decided to treat her fairly aggressively. She will stay on Purinethol and Prednisone (20mg), in addition she will start on Prograf. If her liver responds, they will wean her prednisone off. If it doesn't respond, they will do a liver biopsy to make sure it is autoimmune (as opposed to secondary inflammation due to cirrhosis.)
Dr Romero mentioned transpant more times in one day than the whole time I have known him! I think he is trying to prepare us. He said that no matter what she has to come off the prednisone, she has had no height growth since 2001, and has a growing cataract in one eye.
Physically, she has her ups and downs, more energy, but also more joint pain as well. She takes pain meds every day.
Dr Romero stopped 2 of her meds, but then added 2 more! He also stopped her Vit. K shots, so that was a relief for her!!
Thanks to all of you who love and pray for Haley (and all of us). It means everything to us.
Cheryl

**NEW PHOTOS ADDED**

**Hear Haley's SMASH HIT!**
Dirty Rotten Liver Blues

***Warning 1 MB file***

Friday, October 10, 2003 7:31 PM CDT
Well, first I never update, now I am doing it twice in one week!!

Unfortunately, there is a need to update this time. Haley had routine labs yesterday and her liver numbers are not good. Her PT is 18, AST/ALT in the 200's, GGT is 200 and bili is 1.75.

So she has to get Vit. K shots for 7 days, we are doubling her prednisone and they will repeat her labs Monday in Atlanta. Guess who is the lucky mommy that gets to inject her child every day for a week?! I think it will be much harder for me than for her!!

I'll try to update next week from Atlanta.

I want to thank you all for taking the time to sign Haley's guestbook, we look at it frequently, and it always makes her smile!!!

Please see the journal history for Haley's whole story.

Monday, October 6, 2003 2:01 PM CDT
I am finally updating our journal!! I am even going to try and add some pictures!
Haley is doing pretty well. Her last labs showed her liver function, including bili and ggt all a little more elevated than usual. But we have all adopted a "wait and see" attitude as the only thing to do is increase her steroids and she has been on a fairly high dose of prednisone for 2 1/2 years now. And they are taking a toll. She has a cataract in one eye and she has not had any height growth since 2001.
She has chronic joint pain, as many people with AIH and SLE do. (And she has both of these diseases!) Again, our hands are tied because the treatment would be to increase her steroids, so for right now we are treating her with pain meds...Ultram and Lortab.
Homeschooling is going well...she is a dream student. And she wrote and recorded an original song! We did it at a recording studio and it is called "The dirty rotten liver blues". If anyone wants a copy, send me an email.
We are leaving for Atlanta on Sunday (10/12), hopefully we will be at RMH. She sees the Rheumatologist on Monday, the Transplant GI on Wednesday, and she will be admitted on Friday for oral surgery. If all goes well, we will be discharged and on our way home by Saturday.
Her meds currently are purinethol, prednisone, actigall, colchicine, plaquinyl, Kphos, zinc, iron, celebrex, prevacid, remeron, atarax, ultram, and lortab.
As always, thank you for your love, prayers, and support.

Haley's History
HALEY’S STORY

Once upon a time there lived a perfectly normal family until one day…..

In January of 2001, Haley had a sore throat and a fever. At the doctor’s that day, her lab work showed liver abnormalities, and her spleen was enlarged. She was admitted to the PICU and very quickly worsened. Our doctor was using scary words like “unstable” and “critical”. She was diagnosed with pneumonia and developed respiratory failure. At that point our local hospital was past its comfort level with this critically ill 7 year old child, and we were transferred to Duke via air ambulance. We left around midnight on a Thursday, and that trip remains one of the most surreal experiences of our journey. Here I was on a bitter cold, yet beautifully clear January night first flying, then riding in a screaming ambulance through dark, deserted streets, with some man I had never met before keeping my daughter alive by forcing air into her lungs with an ambu bag. I remember thinking, through my panic and fear, that I would never be the same person again. Some experiences are so profound; you know in an instant they have changed you forever.

Duke: The place we learned about PICU’s, vents, and hospital chapels…..

Once at Duke, the doctors were quite sure we were dealing with a malignancy…it was the only thing that explained her profound bone marrow suppression, her deficient immune system, and her enlarged liver and spleen. A bone marrow biopsy was done and a diagnosis of Acute Myelogenic Leukemia (AML) was made for 48 hours…then the flow cytology of the bone marrow aspirate showed no evidence of cancer. Lots of prayers of Thanksgiving that day! Haley was extubated after 6 days and steadily improved. She was given IV steroids for her lungs and they probably masked her liver problems…but not for long.

“She won’t live her whole life with that liver….”

We were sent home and everything seemed fine…except it wasn’t, stubborn liver numbers that wouldn’t go down, nagging fatigue and just a parent’s sense that things were still not right. Every week those liver numbers were a few points higher until suddenly she was in subfulimant liver failure with an AST of 2000, ALT of 1950, Bili of 13, and a PT of 20. She was immediately admitted to our local hospital and given Fresh Frozen Plasma to correct her clotting factors, so a liver biopsy could be done. After biopsy, we finally had our diagnosis…Autoimmune Hepatitis (AIH). She responded well to the steroids, but developed gallbladder problems, and was transferred to Cincinnati Children’s Hospital where they felt she had an “overlap syndrome” of Primary Sclerosing Cholangitis (PSC). Serial liver biopsies were done, and the hepatologist there said her liver “crumbled” as he extracted a piece with a needle. He said she could not “live her whole life with this liver.” He said he expected her to need a transplant by age 12 or 13. We were devastated; we couldn’t believe what he was saying. This sort of thing happened to other people!

Atlanta: Our new transplant team…and maybe our new home…..

We decided to explore our transplant options and ended up in Atlanta…mostly because of their living related donor program. Her liver has responded fairly well to treatment and her Hepatologist says she will not need a transplant because of her current state of liver disease, but because of the damage that was done to her liver while this disease simmered and we had no idea she was sick. She has cirrhosis of the liver, and that damage is irreversible. She also has “shunting” through her spleen as her body tries to compensate.

Lightning Strikes twice….

2002 was fairly uneventful except for some pretty significant joint pain. We kept charts of her pain and she often required strong narcotics to control it. She had to stop all extracurricular activities and was unable to attend school. We even tried IV Remicade treatments, and then all of a sudden the pain just stopped. We still have no idea why.
In January of 2003, she started running fevers. She ran a fever of 104-105 every day for 30 days. During these 30 days, we spoke to or saw her doctors every day. In fact, our local doctor got to where she would call me when she got into the office to see how Haley had been the previous 24 hours since we had talked. We went to Atlanta twice that month. She was initially diagnosed with CMV and had I PICC placed and was started on Gancyclovir, but instead of getting better, she worsened and we were sent to Atlanta for admission and workup of” fever of unknown origin”. Once again, they scared us to death with the cancer talk, this time they were worried about lymphoma. This time the bone marrow biopsy came back perfectly normal right away and we all breathed a sigh of relief. She was a bit of a mystery to the doctors with her fevers, swollen lymph nodes, and odd rashes. As we were discharged, a tentative diagnosis of Systemic Lupus Erythematous (SLE) was made. But lupus could be very mild and was only worrisome if it affected the heart, lungs, or kidneys. So we thought we were “safe” from another horrible diagnosis.

SLE: Not just rashes and joint pain……

Haley never rebounded from that hospitalization and she developed a strange new symptom – her eyelids swelled. Our local doctor ordered a CT scan to check out those swollen eyes and they discovered fluid around her heart and both lungs. Soon after she began sleeping 14-18 hours a day and coughing at night. That earned us another Atlanta admission. She was admitted on May 7th, and we stayed for 6 long, horrible weeks. She had 3 cardiac drains placed, 3 pulses of IV Solumedrol at 900 mg a pop, a bout of Shingles that caused her bladder to shut down, a dose of the chemo drug Cytoxan, and her liver couldn’t take the stress of all of that so it shut down too and she had an episode of hepatic encephalopathy. All in all, she spent 14 days in PICU, 4 of those on a respirator. She was discharged on 6/18 on 19 oral meds. We are down to 16 now.
As for right now, we trust in God and take things one day at a time……And today is a good day.

Sunday, August 10, 2003 10:34 AM CDT
Please leave Haley a message in her guestbook.

Thursday, June 12, 2003 9:58 AM CDT
Hopefully Haley and her mom will be able to post an update soon.

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