Monday, August 30: Update

My days are starting to bleed together. One of my co-workers asked me how my weekend was. My response: “I don’t remember it.” And I really couldn’t. Granted it was an early Monday morning, but it was indicative of how fleeting is my time. Even as I write this, the clock stares at me, shocking me with its pronouncement of another day gone by. On the one hand, I want time to slow down so I can catch my breath, and on the other I want it to speed up, hastening Claire’s recovery.

If I remember anything from this weekend, it is reflecting on the fact that it’s been three months since the accident. My shoulders get heavy just mentioning it. The difficulty level has increased. I reflect on the first few days when it happened, hoping that as we brought Claire out of hypothermia, we’d take great strides to recovery. We were cautioned that the recovery would take a long time, but we still didn’t grasp the gravity of the situation: little did we know that weeks, months and years of shuffling forward were ahead of us. The slow pace is what is difficult, each day another day without seeing Claire smile, hearing her voice or watching her play. We’ve survived for three months without those things, but we can’t imagine living without them for another day. But we do it anyway, because we hold on to the hope that day will come soon.

And while they’re not the strides we hoped for, we continue to take baby steps toward that day. Following Claire’s horse therapy on Friday, we spent the weekend running her through the gamut again: massages and stretching in the morning, body weight therapy in the stander, visual therapy with Wee See (thank you Rollin), oral therapy exercises, exercise ball therapy, more stretching, more exercising, more massaging and then some tummy time. On some days we see something new. Tiffany had the idea of buying some Baby Orajel as part of oral therapy. Her idea was that when you feel numbness in your mouth, your tongue tends to explore that side of your mouth. Claire’s tongue exercises have been limited. So we tried the Orajel. It worked right away. We watched Claire move her tongue to the right side of her mouth, feeling where we had placed the drop. We all cheered watching her little tongue move. Her curiosity turned to annoyance when the feeling didn’t go away. She didn’t like it. It was a victory nonetheless.

These victories, no matter how small, still help us battle the hope defeating thoughts like wondering if Claire will ever get better or how long will Heidi and Autumn have to wait to play with their sister again. We don’t dwell on these thoughts, but they stalk us. We still return to your comments for support. Knowing that such a wonderful group of people are praying and hoping for us, helps us keep our spirits up. Thank you as always. Goodnight.

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49 thoughts on “Monday, August 30: Update”

  1. My heart is heavy as I read your frustration. I’ve nothing smart to say, unfortunately. Just wanted you to know that I feel your pain. I hope a virtual hug helps. ((((hugs)))) Love you guys, and praying for you continually.

    (And Tiffany… you’re quite brilliant with that idea… wow!)

  2. Tiffany and Tyler, you are doing an amazing job. The prayers for Claire are abundant in our house. I think about her ALL day! She is such a beautiful baby girl! She’s very lucky to have such devoted, dilligent parents. You are really an inspiration to many, I have no doubt. You make me want to be a better Mommy to Noah and Abigale. I hope to see you soon. Claire, sweet dreams sweet girl!! Hugs and Prayers!!

  3. I think about your little family every day…and pray God will bless you with a
    miracle for your little Claire. You are an inspiration to me as I take care of my son with a brain disease. Never quit looking for the blessings and thank God for all the ways He cares for you through the struggles of each day.

  4. Hi there. We don’t know each other at all, but I’ve read every post that you’ve written. I don’t usually fall asleep at night without getting my Claire update so that I can specify my prayers for your brave girl. I care so deeply about her and share her story with my close friends. They ask me often, “How is Claire today?” I fill them in on her accomplishments, the new things that you try, and your feelings when you share them…all so that they can join me in prayer.
    I am so shy to write to you, not knowing you…but I can feel the strain in your words tonight and, if it truly does comfort you to know that many are caring deeply alongside you, I figured I should let you know that there’s one more out here. I would so love to meet Claire, read to her, offer a quick break for your wife… I will contact our mutual friend Becky Barnes to see if I might be able to join her on a visit one day, if that’s okay with you.
    I pray with expectancy in the full recovery of your daughter and it will be a glorious day when you see her smile and hear her voice. Hold tight in knowing that those days are upon you.
    In Christs love,
    Annick Davis

  5. I have been keeping up with little Claire since the day my son, Rob Nickell, sent me the news. God bless you as parents, as sisters, as those who love Claire and hope for improvement each day! You are amazing parents–keep up the good work that you are doing for Claire. May God grant you patience, strength and ever present hope !

  6. I, too, have been reading your posts. I continue to pray for Claire. I have a cousin battling acute myeloid leukemia and a niece battling juvenile diabetes. my oldest daughter is a drug addict and is still using. i hate that we face life threatening issues like these. Seems we all have some sort of cross to bear, and it gets very large and very heavy sometimes. It also seems as though we are carrying it all alone, up hill, and while we are extremely malnourished, weak and sick. All I can do is pray and wait. That’s all any of us can do most times. It’s heartwrenching. It’s difficult. But there is HOPE! I thank God that Jesus gives us hope!!! We can continue to squeak out a day and go through the necessary agony because HE LIVES. I pray that your hope is strong in Him and that each day brings a glimmer progress, however dim it may be. God bless and keep you. God heal Claire, please!

  7. They say ‘Good things come to those who wait’ and I have to say, I’m a firm believer of that. Claire seems to be doing good so far and you’ll always have your good and bad days. Some more than others. Always remember that we’re here thinking of you and hoping for Claire’s recovery. As always, hang in there and keep doing what you’re doing. Thinking of you in CT!!!

  8. Your wife is a very smart, innovative woman! A mother or father’s love can do wonders when their child needs help, and you have both proven how far you will go to help little Claire. May God continue to bless and sustain you through the battles.

  9. Try not to dwell on how much more therapy still needs to be done. But rather focus on praising our Lord for the steps you have made forward. Remember, you have made significant progress that even medical professional are at awe with. Which only means that you are steps ahead of of the recovery period. I fully understand that what you are going through CAN NOT be an easy task but that is where God comes in. He will guide you, He will open doors, He will give you hope, He will be with you every step of the way, He will not leave you nor abandon you. Keep your eyes on Him. He will give you that strengthen to do it all over again tomorrow and the next day and the next etc. All your hard work,sacrifices and faithfulness to Him will not go unnoticed, you will be blessed by Him. Keep pressing on!!!Remember with Him all things are possible. May you feel His loving arms today wrapped around you and may you feel His presence and know in your heart that you are not alone. That is my pray for you and your family today. Be still in Him and know that He is God…
    Love ya…

  10. I have followed your story and your family is in my prayers. I know you will get through this and be stronger for the experience. I often lean on this scripture. Mark 11 verse 24. “So I tell you to believe that you have received the things that you ask for in prayer, and God will give them to you.”
    I do not know why certain things happen, but i do know that God is real and his son Jesus Christ is Alive. Hang in there.

  11. “Our hope is built on nothing less than Jesus blood and rightness. On Christ the solid rock I stand all other ground is sinking sand.” We are praying that your Hope is increased and and that He holds you lovingly and firmly in His arms. Continue to hope, dream and press on towards Claire recovery. We are praying ……..The American Grandparents

  12. Like so many others, I look forward to the “Claire update” each day. Having never experienced grief such as your family’s, I cannot even begin to say “I know what you’re going through…” Like others have said, God will offer graces as you need them and each low spot you and your family have will be countered with the high ones. God’s time is on such a different schedule than our own, I pray that your family will learn to adjust better to His time and take comfort in having faith that He is with you always. Claire’s path has already changed so many lives and she is only three! God bless your family and the strength that you have now and the strength you share with other families all over the country.
    -Blessings from VT.

  13. Oh the babysteps and inchstones – the wait is excruciating at times. I understand the thoughts that stalk you. Even more difficult is seeing the pain reflected in Autumn and Heidi’s eyes – and the questions that swirl in their minds. Every “wish chip” my son eats is a wish for Lola to “get better.”
    I love Tiffany’s idea of the orajel – brilliant! We pretty much tortured Lola by sticking random (tiny amounts) puddings, popsicles, frozen teething things, facecloths, etc. into her mouth. Then I decided to leave her alone for a bit. One day last summer as we drove to the West coast, I handed back a Happy Meal to my son – and not only did Lola notice, but she freaked out…screaming and crying. We had no idea why. Well, she “remembered” Happy Meals (I’m such a good mother…) – she didn’t stop screaming until we handed her a fry to hold. It was from that moment forward that she started to eat orally. It was the strangest thing. Letting her watch her sisters enjoy food, eat an apple, etc. is great therapy.
    Anyway, just wanted to chime in that you are doing an amazing job – you’re so focused on giving Claire every opportunity to heal and to flourish.
    I have a necklace, a ring, and a garden ornament that all say “Believe” – it helps me to have something on which to center my thoughts.
    Thinking of you.
    Gillian

  14. what a gift of words the commenters before me have offered. i can see how you get such energy from these people.
    i too have read every update… i see our claire journal in my inbox and i can’t wait to see what she’s done the day before (i’m on the east coast) and marvel at your perseverance, your creativity (you go, tiffany, for that awesome orajel idea!!), your diligence, research and grit.
    while the world goes on around you at breakneck pace, onward you go… at what i’m sure feels like an agonizingly slow pace.
    i have not the strength for a marathon. but i’m sure anyone who’s trained for one would tell you that it’s one step at a time.
    y’all are running the good race.
    we are here on the sidelines cheering until our voices are hoarse. go claire!! go claire!! go tiffany!! go tyler!! go heidi!! go autumn!! you WILL win this race. one step at a time.

  15. Know that Claire will be healed in His time. We all want things in our time and not His time but His timing is perfect. We are still praying in Georgia. May God hold you, Claire, your family, and Claire’s caregivers in the palm of His hand, ease your frustrations, and heal all.

  16. I can remember the same sense of frustration when my father was recovering from his brain aneurysm. It seemed the progress forward was so slow and every perceived ‘step back’ was a crushing defeat. We just wanted him to be well. The only solace came from an ever present feeling that Dad was in God’s hands and would be fine. Today he is not quite 100%, but he is back at work and taking each struggle in stride. I have to say that I feel that same sense of peace when I pray for Claire and for your family. God has his hand over you and He is there to support you and your family. I hope that helps!

    Love,

    Amy

  17. Your post is very powerful. Tiffany & you have already thanked me for allowing me to know you. It’s a privilege. The small strides are what will journey you towards the big picture. We always wonder what the future holds-no matter the brevity of our situation – a semi- charmed life or a long recovery. The only thing that matters is how much you love Claire. You show it beautifully.

  18. So much about God I don’t understand. Lifting you up right now to him and knowing in my heart that he loves Claire even more than you do. But the deep sorrow can be hard to bear. Please know you are not alone and that all of IBC is with you all.

  19. you and tiffany are amazing parents and the strength you exhibit inspires me…..you two are courageous, creative and determined.

  20. I still pray every day for you all. As life goes on and days seem grim, God does have a purpose in every part of the day. That might be to help Tiffany depend on Him when what she is doing seems mundane and it might be to give you joy watching your daughter move her tongue. Whatever it is, He is good. Please do not forget that. James 1 says that “Every good and perfect gift comes down from the Father.” That means ANY thing of good quality is of Him. Claire is of Him and all that she does is of Him. Again, I cannot wait to meet her.

    In CHRIST’s never ending Love,
    natalie

  21. I continue to pray for Claire every day. I think about her so often throughout my day and wait anxiously for these updates. I pray that she will amaze everyone with the speed of her recovery. I pray that you will all be able to sleep at night and not be anxious. I pray her sisters will be strengthened through this ordeal, that they will grow closer to God and learn to lean on Him as never before.

  22. And just look how far you’ve come in three months! Claire can see, she isn’t in a coma, her limbs are far more flexible than they were, she can ride a horse (!), and she obviously tracks your movements. She tries to do what you ask of her in that she’s raising her head slightly, and she’s surrounded by a loving family in a home that’s warm and comforting. And as of yesterday, she can feel stuff in her mouth that’s unfamiliar. How great is all of this? God bless all of you!

  23. Although I don’t post everyday, I continue to pray. I thank God for your inspiring and tireless efforts as parents, for Autumn and Heidi being wonderful big sisters, and for Claire’s continued strength and progress. I also ask Him to show you guys His pressence in whatever way you need, to help your whole family get through this.

  24. You’re doing an incredible job pushing forward to help Claire get better. You’ve come SO far!
    I can’t imagine how you cope with this everyday but I am amazed by your words, even when you’re feeling down it’s obvious you are working to pull yourself back. Always remember there is an army of people praying for you. Even though most down’t comment everday, week or sometimes at all, mostly because our words seem trivial to us, we are here for you and praying for you everyday.
    I know only God can carry you in the ups and downs of this journey and I pray that he will give you a soft place to land and recharge you for the days ahead.
    Still praying, Keeley

  25. Tears are in my eyes as I read your well-written expressions of sorrow, joy, victories and defeats. Brings back somewhat faded memories. How I desire to help you guys more! You and Tiffany and excellent parents.

  26. God bless you and your family, Tyler. Know that we are continuing to pray for Claire’s quick recovery. Hold on to the hope.

  27. Orajel! Tiffany, that was a cool idea–and it worked, as have so many “off the wall” ideas both of you, and many others have come up with to help Claire. The 3 month mark feels like such a weight, because at the beginning you’d hoped she would be all well, and now you’re being more realistic and looking at more months ahead of you before you see her smile and hear her talk and laugh. That would get anybody down, let alone such a loving, caring father. A friend of mine recovering from a stroke talks of his recovery “inch by inch.” A pastor friend of mine, who keeps asking how Claire’s doing, told me that he used you two and Claire in his Sunday sermon as examples of God’s healing power made manifest over suffering and pain. Now even more people are praying for her recovery, and in your support. What the two of you are doing for your daughter is very, very hard. You do it with the help of God and many other people because of your intense love for her and the family you’ve created. Blessings and prayers on that journey, however long it takes. I’m with you all the way! Dodie

  28. Praying, praying everyday for you all. I’m so sorry for what you all are going through right now, it’s not a journey any of us would chose to take, but you are navigating it with such strength and courage, and God is with you every step of the way. Not a day goes by that I don’t think of your family, I have shared your story with my family and our hearts go out to you, you are always in our thoughts and prayers. Thank you for keeping us updated on little Claire, I sympathize with your situation, and its comforting to hear of all her little victories, the pictures are also beautiful. Take care, and God Bless

  29. It is so expected to feel so overwhelmed with what has happened. Claire and your family have brought so much inspriation to others. The small steps are adding together and it seems you reach another goal each week. Stay strong and know that love and prayers are with all of you.

  30. You write so well I can feel your weariness and my shoulders droop, too. These days are difficult. The tension is real. One thing I know for sure, it will only get harder if you dwell on “years of shuffling forward.” I encourage you to banish those thoughts the moment they crop up. We don’t know what will happen tomorrow or next week, let alone years from now. Take it one day at a time. If necessary, one hour at a time. The future is in God’s hands, and it will be good. Meanwhile, He promises strength for today. His mercies are new every morning.

    I do understand the hollowness and the ache. I pray that the little victories will help fill it, and I pray that, when you lie down to sleep, you won’t worry about the future unknowns, but you’ll remember that little tongue searching, and even the subsequent frustration the numbness caused — the reminders that your Claire, the feisty, strong-willed little girl you love, may not be smiling yet, but she’s still with you, and all God has purposed for her will come to pass. All of it. He created her for His pleasure and glory. None of this takes Him by surprise. None of it touches Claire or you apart from His kind and redemptive will. I pray you will know that with all your hearts.

    Much love and prayer,
    Jeanne

  31. Tyler and Tiffany, Today I learned of another little girl who fell in her babysitters pool last week in Marshall, Texas. They are at Children’s now and as I read their early posts my thoughts immediately turned to Claire. This little girl is named Maddie Skinner and she has a caringbridge page. Maybe if you are up to it, you could encourage her parents. You guys are such an inspiration.

  32. Tyler i can’t say it enough: UR DOING BEAUTIFULLY!!

    My fav uncle is recovering from a stroke. He needed to tie down to not used his left side at all for the FIRST 4 MONTHS to regain 100%. He didn’t do it n now he has 60% to 70% after a year.

    It’s hard to see Claire’s frustration w numbing her mouth BUT u got progress:))

    Prayers are up for the long-haul which can get SOOO weary bc of the chronic nature… Hang in.

  33. We continue to read the posts and keep updated on Claire. While we continue to pray for her recovery and rejoice in her victories, we have you and Tiffany in our forethoughts – keep up the strength and faith. Make time when possible for yourselves and for just the two of you. I can only imagine how difficult that is but it is important. You need to keep your relationship strong so the strength can keep moving Claire on.

  34. Tyler & Tiffany, I saw a show on PBS about brain plasticity a while ago, and one of the things they talked about in brain injury is the importance of therapy (one link http://www.sharpbrains.com/blog/2008/02/26/brain-plasticity-how-learning-changes-your-brain/) anyway, I’ve been so impressed with the rigorous regimine you have Claire on and wanted to encourage you both to keep up the good work. I pray that, like a pacer in a marathon, you cab find time in the journey to refresh yourselves too.

  35. A new ‘normal’. A new Claire. My thoughts are with all of you and truly hoping for strength and courage during your greatest struggles.

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