A day in the Life of Claire

This spot is dedicated to the preparation and life of Claire Cox. Claire has been diagnosed with Trisomy 18, which is a genetic disease caused by an extra chromosome at the 18th spot. We know that God can cure Claire at any time, and continue to pray for this; however we also know that His Will, will be done!

Thursday, November 30, 2006

CLAIRE HOPE: Oct 3 2006-Nov 28 2006

Exactly eight weeks to the day! This will be our last post to this site, as it is dedicated to the "preparation, life, and death of Claire". They told us probably 6-8 weeks, and boy were they correct. So many people have asked (or we have just said) how our last days have been, so we decided to share the whole story, because we believe it is beautiful! Don't misunderstand, it hurts, even more than we had anticipated. We knew it was coming, we knew to expect it, and we thought we were ready, but we were wrong!

Let us start by saying the last 15 days or so were long, particularly the nights. Claire used almost all her energy and breaths to cry. She would start around 11:30pm and cry (seemingly in pain) until about 5am. On Monday night, the same happened, except this time she was not crying, just having difficulty breathing. She seemed to get better around 5am, so we laid her back in our bed and slept. At 830am I was leaving to take Emily to an orthodontist appointment and before I left I needed to hook Claire up to the feeding pump. When doing this, I thought how peaceful she looked, almost too peaceful. So I checked to make sure she was still with us, and she was! Tammy would check on her about every 15 minutes, and while bathing Camille, she left the tub to again check on Claire. It was this time, around 930, that she found her. So as you can see, Claire was at complete ease all morning. What a beautiful day! (difficult, but beautiful). Nurse Sherri came and pronounced her dead at 10:13am. We had heard of other families bathing their infant, prior to calling the funeral home, we thought that was morbid, however, during this time, we decided we wanted to do just that, and what a great pleasure it was. Tammy bathed her lifeless body, and was able to brush her clean hair, add all the body oil and fragrances like she always has, and then let them take her away. It was extremely hard to let her go, but what a great experience to have with your child that one last time.
For those of you who have been traveling this journey with us from early on, you may remember our decision regarding what to bring Claire home from the hospital in. Well, we once again got out her beautiful dress to again, "send her HOME" in.

Thank you all for walking with us through this journey, and again, please do not hesitate when you see us to TALK, LAUGH, CRY, REMINISCE, ETC about this journey, trust us, its on our mind and we like to address it with you if you feel the need!



I always felt so honored to be Claire's Mommy, even before we had formally "met". Now, the day after her passing, she never ceased to amaze me, humble me, on how I got so lucky to be this child's Mother. All parents (especially Mom's) sit around and brag on their children. Its just a rule at being a Mom. Please allow me my moment to brag....

She entered this world surprising us all. She left us here together astounded. Her passing has left us both as parents stunned at the effect that she had on us. I always knew from the moment we learned of her illness, before she ever came to be, all of her days were ordained. How glorious and comforting to know that in the midst of it all, there truly WAS a plan....a divine plan. Divine is defined as; of God, sacred, holy. And so it was. I have taken so lightly that God truly has a master plan for us. Claire showed me this. Claire showed us that even in what was to be a negative thing, an illness and death, that all things truly will work together for our good. She drew out of us to live by our faith, for we truly lived moment by moment. She showed her Mother who was to be teaching her that I didn't need to know the details....in the appointed time, we would. As for Claire, she showed herself in such a way, I want to make her proud. I want to be a better person in EVERY way because of the pureness and life that gushed from her tiny being. She has left me full of hope to be confident of what is to come; for what I feared would be the worst time of my life could not have been more full of Jesus. Death is not something I now fear, how proudly my child taught me this. To know we were there holding her to usher her "home", I am honored. I bragged today that I do not know how God has had the time to give to anyone else because he has been encamped in our home to every detail. My child taught me that Matthew 10:30 is indeed true that the hairs on my head are all numbered. He orchestrated it all "custom fit" to us as her parents.

In almost every detail of her passing we changed what we had thought we would do. And we are so glad. The biggest change was in seeing our Claire for what would be our last time here on earth. We had thought yesterday, when finalizing the plans at the funeral home we would not see Claire nor would we have an open casket. We were so blessed to have had such a beautiful experience to her passing, we feared that seeing her might leave us heavy laden. We decided this morning that we would expect the worst but brave it just to have no regrets, and Claire outdid our expectations, and whispered in my ear, see Mommy, God IS able to do exceedingly, abundantly, more than we could ever ask, think or imagine(Ephesians 3:20). Not only did she radiate beauty like I have never seen before, she possessed that peace that surpasses all understanding (Philippians 4:7). Leave it to our baby girl she even had a little smile, as if a smirk to show that there was joy in this day. We have yet to relish in this joy, but she has shown us that we will.

The loss of Claire is large. I told Claire I would try to not embarrass her today and I found such joy in thoughts of her and Eliot watching, and Eliot comforting my little lamb and telling her, "that it's okay, my Mommy was the same way". What a blessing...

For what we thought was our journey with Claire, the path is now unfolding. But he promised us that He would go before us and prepare the way and that He would show us this is the way, walk now in it....


We are leaving today to travel by RV - We will return home, sometime!!!!

Wednesday, November 29, 2006

Claire Hope CoxOctober 03, 2006 - November 28, 2006

Claire Hope Cox - An infant born on October 3, 2006 departed this world at her home from a chronic illness to join her heavenly father on November 28, 2006. Although her life was brief she touched all those who met her. She is survived by her loving parents Billy and Tammy Cox. Grandparents Eugene and Doris Cox, Lynda Elmore. Claire had four loving siblings Carrie Stuart (Bry), John, Emily, and Camille Cox. One special niece Maggie Stuart and a host of Aunts, Uncles, and cousins. There was a private grave side service at Pinecrest Cemetery.
Psalm 139: verse 13 - 16
For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. Amen, Claire

Claire Donations can be made to the Mercy Medical Pediatric Guardian Angel Program in memory of Claire Hope Cox. Mercy Medical Development office P.O. Box 1090 Daphne, AL 36526 Phone 621-4884.

Tuesday, November 28, 2006


Sunday, November 26, 2006

We have been discussing how thankful we are for so many, many reasons this holiday....and of course one of them would be our Claire. It is so amazing how you can feel two exact opposite feelings simultaneously! How could something so innocent and tiny make us flash from one emotion to the next? For instance, one of my highlights today was sitting on our living room floor playing with John, Emily, Katlyn, Billy & Camille; and there was Claire! It seemed so overwhelmingly wonderfully....normal. We were playing games, girls loosing horribly to the boys (they cheated) and we would pass Claire around to one another when it was our turn. Normal is defined as not diseased, to us, she is our norm;our standard, model and pattern. She is showing each of us in our family something so priceless, she is teaching us to set our standards high. To model ourselves in our faith and to pattern our actions not on what we see or feel, but rather on what we know and believe.

I enjoyed watching "The Bishops Wife" today on the old movies station. Cary Grant played an angel, who was sent to the Bishop and his family, and had such an impact on everyone. Everyone except the Bishop that is! This angel told the Bishop he was sent there for him, because he had prayed for guidance. It wasn't until the end the Bishop accepted this angel and received what he needed. I found it to be true in our life with Claire, each day embracing her and her life. For she was designed just as she is and brought to our family and even as hard as it is due to the fear or the unknown of her condition we are going to respond positively to this situation.

It's beginning to look a LOT like Christmas in Claire's house these days! We will post some pictures of her in the next few days of her decking the halls. She must be worn out from all of her holiday tasks because we finally had a good nights sleep last night.

Billy named this "A day in the life of Claire" and it is amazing how at the end of the day, there are not enough words to convey what her day was really about.

Wednesday, November 22, 2006

You may have wondered why we have not updated the blog since we last told you we had a feeding pump. You may have guessed that we finally got to sleep and slept for days, OR that she still cries the whole time the sun goes down. The later would be correct! Still from about 11pm to 5am, Claire is not only awake, but crying as hard as she can. We think we have tried everything, and she has no problem using the bathroom, so we just continue to rock, walk, sit, anything to try to appease her. Tonight, instead of trying the slow continuous feeding, we are going to attempt to feed her larger amounts periodically, hoping to "fill" her tummy and then stop. We just wonder if she "feels" hungry not having a full meal from time to time.

Claire continues to attempt to suck a pacifier, but fails to understand the concept of a bottle. Tammy enjoys trying to feed her by bottle, but I wonder sometimes why not just take the top off and pour it all over themselves, because that is what it looks like when she finally gives up. It can be quite funny.

We had the pleasure of meeting Eliot's parents, Matt and Ginny, this past weekend. They came down to the beach with some friends, and boy what a pleasure. We all prayed together and gave thanks for our children. They are as nice as the blog site made them sound. They are a wealth of information for us, and we want to thank them publicly for everything they have meant to us. Eliot was a lucky boy!

Claire has asked for a turkey leg tomorrow, we think she likes the skin the best!

Friday, November 17, 2006


Today is the day before the IRON BOWL, it always proves to be a great game, regardless of who wins. Also, today we had delivered a pump, which will feed Claire all night. So we no longer have the need to wake up every 3rd hour, waking her up, to feed her. You would think I am a child at Christmas. I have not looked so forward to going to bed (to get a good nights sleep) in quit a while. Of course, there is still no guarantee that she will sleep the through the night. If nothing else, at least we no longer have to set our alarms.

Wish us great sleep. We will let you know tomorrow how successful it was.

Wednesday, November 15, 2006

For any of you paying attention, yesterday (Tuesday) was Claire's 6 week birthday (42 days). You may remember, the cardiologist told us that she would probably start having more severe problems starting around 6-8 weeks, due to her bad heart pumping most of her blood to her lungs, and not to the rest of her body. They said the lung pressure of newborns is much higher at birth, and this pressure starts to decrease to normal pressures around this time (6-8 weeks). This increased lung pressure has been helping push her blood toward the rest of her body. Well, I have to tell you, it seems they are pretty accurate. We "think" we can tell a difference not only in her appearance, but also in her alertness (both seem to be deteriorating). She still has some good days, however, it seems it is more like "good hours" instead of days now. Her breathing seems more difficult most of the time too.

On a lighter note, she appears to have her days and nights mixed up, sleeping a lot of the day, and awake (and crying) almost all night. This has been going on now for 5 days, and yesterday (Tuesday), I thought I had figured out why. You see, we keep her in our arms or her bassinet for the whole day, and at night, we put her back in her incubator (we call it her "house"). The only reason for the incubator was to help her maintain body temperature, which she can do by herself now. So anyway, I decided we were "cooking" her by night (her house stays at 85 degrees). I too would stay up all night and cry if the bedroom stayed that hot (remember after the hurricanes and NO power for weeks). Anyway, we could not wait to go to sleep last night, thinking we would finally get a good nights sleep (for us now, that means feeding her for 1 hour, then sleeping for 2, and then getting back up to feed her for another hour-sleeping 2 out of every 3). Well, needless to say, we must not have been "cooking" her after all, because she still stayed up from the 11pm feeding until the 5am feeding. So when people ask us how we're sleeping, we say, "we're sleeping just like a baby" (you can interpret that many different ways).

Please don't misunderstand us, Claire is a very easy baby to care for most of the time. The only difficult thing about dealing with her is the "stress" level of not knowing. We never know if whatever she is doing at that particular moment, is a Trisomy affect, or just a normal infant cry, or if it may be her last cry. Occasionally, she appears to be crying out (ever so softly) as if in pain, but even normal infants cry out this way (colic, gas, BM, etc). So we just treat her as we did Camille, or any other infant, and just try to treat any symptoms we detect, and if we can't detect any, then we try to perceive something like colic or gas and treat that. If she were older, we could blame teething, isn't that kind of a catch all for toddlers crying for about 3 or 4 years?

When you see Claire, please don't hesitate to tell us if you think she looks better or worse than the last time you saw her. We really would like your HONEST opinion. We see her all day every day, and that makes it hard for us to notice changes over time.

With all this said, understand why we might look as if we have bags under our eyes, or look like we're in our 40's, instead of our 20's :-) .After all, our child is now older than we are (if you count her days as years).

Sunday, November 12, 2006

Necessity is the mother of ALL inventions!

You can see how silly this looks, but it is very convenient. One night recently when John decided to feed Claire all night for us, so we could finally get a full nights sleep, he insisted he would not wear this contraption, however, before the night was over, he had become a user

This is Claire in a baby doll carrier! She fits so much better in this than in a real car seat. We do get some funny looks though.

Claire seems to try to take her bottle much better after learning the pleasures of a lollipop

Thursday, November 09, 2006

Enlighten my eyes of understanding that I may see YOUR face in this pitch like darkness.... If you look up understand it is defined as to get the meaning of, know well; know HOW to deal with, be informed, take as a fact; BELIEVE. Well, I feel we have worn this verse out in our prayers!
As hard as this is at times, it truly has been equally balanced with positive events. We are so humbled by the support and encouragement we have received that it somehow makes the hurt seem to subside. Just like yesterday for instance, the weather was perfect and we decided to happen in our familiar stomping ground of Heron Lakes, and what we experienced was overwhelming. Besides the pumpkin patch, it was our first outing with Claire; especially to eat. Everyone there came up to us and you could truly feel the love and support, and some of these people we didn't even know but they have been keeping up with Claire through this blog site. Boy it sure makes us feel much better when feel this kind of support. We know we have support like this, it was just amazing to see it first hand. THANKS to all.

My Mother came home yesterday, with round the clock care....but home at last! She literally dove into her bed as soon as we got there and said with a smile; it's so good to be home and in my own bed. Now we can go and take the girls to hang out and allow Mother to get to know her miracle granddaughter. What a wonderful moment it was as they got to meet....something we feared may not have happened. Another thankful day....

Tuesday, November 07, 2006

No real news here. We think Claire continues to struggle to breathe, but she continues to have "easy" times intermittently. She is now up to 4lbs even. This is the weight they initially wanted her to be at before they would let us come home. So thankfully we have had a "bonus" month at home! The last couple of days (over the weekend), we felt she was looking extremely tired and peak. We called in Nurse Sherri on Monday, and by the time she got here that afternoon, Claire had started looking and sounding a lot better. Even the nurse said today was the first time she was able to note on her chart that by her being so alert, she was moving both hands and feet together and was showing reflexes. She thought Claire was quite alert as did friends Rachel and Michel that had stopped by.

Claire still does not suck or take a bottle, however, Nurse Sherri told Tammy to put a sucker in her mouth, and Claire loved it !! (you know Tammy loves her sweets, and of course wanted to make sure Claire would be able to enjoy this benefit of life). We are going to continue trying this, along with adding flavor to her pacifier, in hopes we can teach her how to take her bottle. Tammy is also glad she will be able to enjoy the "finer" things in life, SWEETS.

Thursday, November 02, 2006

Claire is sleeping better today than she has slept before, mainly because she has never worked as hard as she did today. She spent 5 hours with our photographer friend, Laura Courtney, doing an exquisite photo shoot. This is a preliminary sampling of Clarie's hard work. Click on http://www.lalaportraitsgallery.com/claire/ (be sure to scroll to bottom and click "view full screen" as well as turn up your volume). It is hard to look at this peaceful, sweet little angel and realize just how sick she is. We hope you enjoy it as much as we have, we have never been more proud of our little miracle! What an ANGEL......

Wednesday, November 01, 2006

There is not a whole lot happening lately. Claire continues to amaze us as to how much and how often she eats. She also continues to gain weight, she is now up to 3 lbs 15oz, just one more oz & she's at the big 4.0. We did actually take her out to the pediatrician on Tuesday. No real reason, he just wanted to see her. No RSV vaccine, No TB vaccine, No normal shots any other kid would get. Really just to get her accurate weight and recalculate the amount of food she should be getting. This was all good, but we had accurately guesstimated her correct intake (I guess it is good to know we had done it correctly). He did say he could not really hear her heart murmur, but only because the hole in her heart is sooooo large, it does not make the usual noise. It is really just like "one big ventricle", instead of two, pushing her blood primarily all to her lungs and back (but we already knew this).Her color continues to look good, as well as her breathing most of the time.

Claire is so tiny, we have learned that she fits perfectly in one of Camille's baby doll carriers much better than a real car seat. We just do not hold it by the handle as to not take a chance on it breaking. It really looks funny to see a real baby in this TINY doll infant seat. Camille does not appreciate loosing her toy to Claire, we are really not sure if appreciates her at all, a slight bit of jealousy. We have also "invented" a special feeding device which helps with this hour long process. It is nothing more than a simple baseball cap with a few holes cut in it to hold the syringe, this way it frees up a hand to: work the TV remote, or drink a beverage, or fight off Camille. It is really quit funny looking to wear it, but sure is convenient. We are going to put a few funny pics on the site soon for your amazement. John is coming home from Auburn every weekend to help us take care of Claire, and he is a huge help, both with Camille as well as "peanut".

Ms. Elmore is finally out of intensive care and in a regular hospital room. It is very slow going, but she continues to make progress. She has yet to see little Claire, so hopefully soon they will meet.

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