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!

GOD BLESS US ALL AND ONE DAY WE WILL MEET HER AGAIN!

_______________________________________________________

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!!!!

45 Comments:

  • At 4:20 PM, November 30, 2006, Anonymous Anonymous said…

    I have followed your journey with your little angel Claire since my daughter Sallie told me about her.

    Every day I've checked to see how you've been and what has been happening with her. Thank you for sharing such an inspiring story with all of us.

    Tammy, as one Mother to another, my heart hurts for you and my thoughts and prayers will continue to be with you both as you go on from day to day.

    Teresa Massengill
    Tupelo, MS

     
  • At 5:01 PM, November 30, 2006, Anonymous Anonymous said…

    Tammy and Billy- Once again your beautiful words and quotes from the Bible inspire us all. Tammy when you say “you want to be a better person in every way” You would be a Saint if you were any better of a person. You are one of the most thoughtful, caring and kind people I know. You both were so blessed to have Claire and so was she to have you for her Mommy and Daddy. You are both such wonderful people that I am so blessed to call my friends. Enjoy your trip.
    I love you,
    Rachel

     
  • At 6:31 PM, November 30, 2006, Anonymous Anonymous said…

    The tide recedes
    But leaves behind
    Bright seashells on the sand,
    The sun goes down,
    But gentle warmth
    Still lingers on the land,
    The music stops,
    And yet it echoes on
    In sweet refrains...
    For every joy that passes
    Something beautiful remains.

    -M.D Hughes

    Tammy and Billy,
    The beauty of Claire and her life will remain in our hearts forever. You both have given us so much through your friendship and by sharing the gift of Claire with us. You are a true inspiration and we are so blessed to have you both in our lives.

    We love you,
    Derek and Michel

     
  • At 7:16 PM, November 30, 2006, Anonymous Anonymous said…

    Reading this has tightened my heart so hard, but when i see how beautifully you have handled her life it makes me realize how much negativity i carry. Claire softened mt heart. I pray for her soul and you guys.

     
  • At 7:35 PM, November 30, 2006, Blogger Kim said…

    I'm going to miss you! I looked forward to visiting you each day...and praying for you has been such a treat for me,personally. Please know we have loved reading your story-the fun things and the sad or hard things. It has all been life changing. I pray that I will have the faith to endure hard times like you have. I love the beautiful picture you have left in my heart of Claire and your love for her. I have been blessed in *knowing* you! Your trust in God is so evident and an example to us all. Thank You! May God bless your life journey.

    Friends in Christ,

    Kim

     
  • At 11:01 PM, November 30, 2006, Blogger Matt Mooney said…

    Although I know it is a reluctant trip. We pray that you will have fun & rest & just be together. Your words are authentic. We will miss them, but look forward to continuing our friendship.

    Matt & Ginny Mooney

     
  • At 7:56 AM, December 01, 2006, Blogger nomo wino daph said…

    I have a TON of prayers & thoughts to send your way that have been posted on the message board that I "regular" (too much! :) ) I will send you an email to the link.

    I hope that you guys have a relaxing trip and just enjoy each moment to he fullest!

    Many {{{HUGS}}} to you Billy & Tammy.

    We are in Baton Rouge right now but hope to be back at the beach in a week or two. If ya'll get over there, I'd love to see you all.

    His Love & Mine,
    Daphne

     
  • At 8:21 AM, December 01, 2006, Anonymous Anonymous said…

    BEAUTIFUL!!! You two are beautiful people as well as your precious little angel. The strength it has taken to not only go through the last eight weeks but to share your closest thoughts and emotions with all of us is so unselfish and BEAUTIFUL. I know your little angel has taught you more than you thought she would but believe me, she has taught me alot about Our Savior, Jesus Christ. You all inspire me in ways I can not describe and as I told you last weekend, she has touched so many people. She was brought here for a reason. Have a wonderful trip and know that you are being watched over by a precious little angel.

    Love
    Tracey Gann

     
  • At 9:06 AM, December 01, 2006, Anonymous Anonymous said…

    What a beautiful and touching journey. Claire was so blessed to have such wonderful parents. I will miss little Claire but knowing that she's peaceful and sitting in the lap of Jesus gives me great peace. Not to mention imagining her holding hands with Eliot dancing in the streets! The depths of my heart and soul go out to you both, as I continue to pray for you daily.

    With much love, sympathy and adoration,

    Diane and Scott Gilmore

     
  • At 3:51 PM, December 01, 2006, Anonymous Anonymous said…

    Tammy & Billy....thank you for sharing your "angel" with all of us.I will miss all of you as it has been such an inspiration to read this blog each day. I know that He will watch over you as you travel another journey without Claire...as she will always be in your hearts...He will keep you safe.He blessed you with her and now you will be blessed in other ways.
    I hope you have a restful trip and always know you have given all of us so much by just being yourselves.
    Love to you both,
    Billie Sheffield

     
  • At 4:42 PM, December 01, 2006, Anonymous Anonymous said…

    Claire has been a blessing to us all. We heard about her through Eliot's blog. My children and I prayed for her daily, and will continue to pray for your family. We don't know your family, but you all have been an inspiration to us. Many thanks.

     
  • At 6:09 PM, December 01, 2006, Anonymous Anonymous said…

    I have followed Eliot and Claire both. Both families have taught me much. You all were so blessed by God to have his precious angels.

     
  • At 7:23 PM, December 01, 2006, Blogger Carolina Mama said…

    A little piece of heaven - thank you for sharing your Claire, your lives. What a blessing you have been since the day we incidentally 'met' Claire and Eliot. We continue to pray. Thank you again. And we'll look forward to all being together on the other side! God Bless!

     
  • At 9:58 PM, December 01, 2006, Anonymous Anonymous said…

    Your story touched me so, I know about little Claire from a message board Daphne is on. I never heard of this before but after reading this I researched and I donated what I could to research this disorder.

    God bless you and your family. Little Claire has touched many many people, a perfect little angel.

    Amy

     
  • At 1:53 AM, December 02, 2006, Anonymous Anonymous said…

    Billy and Tammy, My thought and prayers are with you In the passing of your sweet little angel.My heart hurts for you.I will keep you in prayers.Love you both. Kathy R

     
  • At 3:51 PM, December 02, 2006, Anonymous Anonymous said…

    AMEN! This is the most amazing thing I have ever read! One word can mean so much! We end our prayers with the word "Amen" but sometimes I think we forget it's meaning. Amen means "I believe". I believe in a Powerful and Almighty God who gives us miracles. Claire was one of the most miraculous miracles( if thats a word) that I've ever seen!
    Claire's life was in every sense a prayer. A prayer of extraordinary HOPE, tremendous faith, and everlasting love!
    May Claire's life continue to influence and guide our actions, and remind us that every minute really does count! AMEN! I BELIEVE!

    Thanks! Your story has really made a profound difference in my life!

     
  • At 5:47 PM, December 02, 2006, Anonymous Anonymous said…

    Dear Cox Family-
    We too have followed Claire's story thru the Mooney's. Please know that you are being prayed for by many, and we are grateful today for all that Claire has taught us. Thank you for sharing your journey with us.

    Carrie Uberecken

     
  • At 3:37 AM, December 03, 2006, Anonymous Anonymous said…

    I found your site through Matt and Ginny's blog. Just wanted to provide some encouraging and thoughtful words. My prayers are certainly with you.

     
  • At 11:20 AM, December 03, 2006, Blogger AW said…

    Billy and Tammy,

    I am so sorry for the pain you must be going through. I will pray that He comfort you only in ways He can. Your little girl was a blessing to many of us that don't even know you in person. Thank you for sharing her with us.

    Andi

     
  • At 11:39 AM, December 03, 2006, Blogger Pam said…

    Godspeed as you travel and rest. May your time be full of quiet and new memories together.

    You have touched my heart, and I have thoroughly enjoyed praying for you and your dear family. I will continue to pray for all of you as God brings you to mind.

     
  • At 8:01 AM, December 08, 2006, Blogger Wendi Kitsteiner said…

    I have followed your story through Elliot's page. As I wrote there, I do not have any understanding of what you are going through, but I do understand grief as we have wanted a child for years ... I am celebrating the child you got to hold for as long as you did. You see her just as I do -- a wonderful blessing!

     
  • At 9:55 AM, December 08, 2006, Anonymous Anonymous said…

    Please know I will continue to pray for your family during this difficult time of transition- I know God will continue to use you and Claire to further His purposes-Love and prayers, A friend of Eliot

     
  • At 7:49 PM, December 11, 2006, Blogger Sarah said…

    God bless you and your family. I pray He'll be with you in a mighty way in the weeks to come. Thank you for sharing Claire's journey~her life is a testimony!

     
  • At 8:45 PM, December 16, 2006, Anonymous Anonymous said…

    God bless you all. We also had a daughter Claire with trisomy 18. She was my third child. (We had another healthy daughter shortly after Claire died.) We were blessed to have almost 10 months with Claire, after being painted a very bleak picture...as you well know. Reading through your site entries brought our Claire just a little closer today. Thank you for sharing your beautiful story.

    Jackie

     
  • At 9:27 PM, May 08, 2007, Anonymous Anonymous said…

    I was there when Claire came into the world at USA. My thought and prayers have been with you and your family since October.
    Ginny, L&D RN

     
  • At 10:59 PM, May 11, 2008, Blogger Chrissy said…

    Happy Mother's Day Tammy! You are a precious Mother! Thinking of you today!

     
  • At 3:11 PM, November 18, 2008, Anonymous Anonymous said…

    Some how I ended up with an email in my inbox with the youtube tribute to Eliot Mooney. As I was reading his families journal I came across your journal.
    Tears stream down my face, my heart hurts not only for you, but for myself also.
    Our middle daughter died Sept 3, 2006. She had a antibotic drug reaction. She was 27 days from being 3. Her name is Sheridan Faith. Sheridan was special, too. She too had a chromosome disorder, hers was Turner Syndrome. Not near as serious as Trisome 18, but she was still a special child.
    I know that it always helps me to know that this is not a journey that I travel alone! There are others there with me, I just don't know them yet.
    I pray that you continue to find healing each day, through each memory and that the Lord is near to you. I am always comforted by remembering that it is not until Jesus returns..... Even so come LORD Jesus.
    May HE sustain you and comfort you as you remember the miracle that HE allowed you to have for a little while.
    wrayjournal.com

     
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