Thursday, August 19: Update

Today’s trip was a little more rocky than the past three days, but still less volatile than some our earlier days at home. We have started taking evasive action if Claire goes for a single day of constipation: today we picked up a liquid suppository and it alleviated her discomfort right away. We recognize the close working proximity of all the body systems more now and make every effort to remedy causes before they cause a symptomatic chain reaction. We did that today, and we hope Claire will have a better day tomorrow.

The girls had their annual back-to-school kick off event on campus tonight. We were again overwhelmed with the support and encouragement. Everyone is very attentive to the girls and Claire’s story. The school has taken up residence in our hearts and we are so endeared to them. When we were faced with the possibility of moving because of the accident, we knew that we wanted to stay in district because the school staff, faculty and students have been phenomenal.

Feelings – new and old  alike – continue to percolate with us all. In addition to wondering when Claire will talk, walk or take her next big recovery step, we wonder when we will feel carefree again. The desire to get Claire better is ever-present; we are always pondering what more we could be doing and evaluating what we are doing wrong. But the biggest weight is just missing Claire. She’s here with us and she’s not. We grieve what she would be doing right now. These feelings are always lurking for us and are most acute in the morning and in the late evening. While we don’t lose hope, we still struggle with the gravity of the situation. The feelings don’t subside: we miss our daughter more each day.

It’s times like these that your support is particularly meaningful. Thank you as always and enjoy the end of your week tomorrow! Goodnight.

26 thoughts on “Thursday, August 19: Update”

  1. Tyler, Tiffany and Family –

    I pray over Claire and your family everyday, throughout the day… Just driving in the car her face pops into my mind and I just cover her at that moment. I do not know you, you live within driving distance of me and maybe that makes all of you “real” to me and not just a blog about a little girl’s recovery.

    You keep me in constant awe with your eloquent way of writing about her day and your experiences with it. You are personal but private with your thoughts. I commend you for sharing such things for the world to see.

    May we read one day that God has connected the dots back together and her body is able to respond to give you guys more of your daughter back.

    Hugs from Denton and faithfully praying over your sweet child and your family. Hello to your Mom as well… May her stay be long and her love and presence comforting to you all!

  2. I still remain extremely hopeful, that one day, in the very near future, I’m going to read your daily update, and burst into happy tears, because Claire has just turned a huge corner!! I can’t explain the love I feel for your beautiful baby, whom I’ve never met, but the love is real and ever present in my life and in the lives of my 2 angels, Noah and Abigale. They ask about Claire and she is always at the top of our Goodnight Prayers!!! Sweet dreams, sweet girl! Love and Prayers!!

  3. I have never met your family but I have followed Claire’s journey from your first post. I am happy to see the progress she has made. You are an amazing family and can not imagine where you find your strength. May God continue to bless Claire and your family. As you continue on this uncertain road please know that people near and far are praying for Claire. There is always HOPE and your family is proof of that!

  4. Reading this post makes my heart heavy because I feel many of the same things – the grief is overwhelming at times. We miss our daughter too – miss hearing her voice, and miss our lives before all this mess began. But I also can’t believe how we’ve changed for the better because of all we’ve been through – sounds trite, but it’s so true. We get emails from random people whose lives have been changed because of our story. That’s pretty powerful. I just always had a “feeling”….a belief that this wasn’t the end of our story – it was likely denial, but I always had a calm sense of “well, they don’t know our child…” that kept me going. And often, when we’re at our lowest, she’ll pull a rabbit out of a hat. Just when we think, “Well, I guess this is as far as we’re going” out comes the rabbit.
    Praying for a big, fat, beautiful rabbit – lurking just around the next bend!

  5. I am a member of Compass Christian Church and have been following your journey with Claire for quite awhile. All your posts are heart rendering but tonights struck a chord for me in realizing the tight rope we all walk in discernment and control. You walk such a fine line between vigilence and faith and trust. Praise God for His presence in your lives and I thank Him for walking this walk with you. Tonight I pray that He will always make His presence known to you especially when you are making decision after decision for Claire’s every action and reaction. I pray that He will let you know those time in which He will carry you and there will only be one set of footprints in the sand……and during those times you will be carefree. Father, your word says in Phil 4:6-7 that we be anxious for nothing but in all things/matters to let you know what we need… let you know our thankfulness and petition in prayer….I thank you now Father for your peace, which surpasses all understanding, to engulf this entire family as they walk with you Father through this journey. I pray that they see you in this journey, often and when they do Father I pray that that is when they will experience those carefree moments. God Bless you all

  6. Tyler, thank you for continued updates about Claire and your family. I’ve been out of town and have missed a few, so am catching up. My girls continue to pray for a miracle for Claire. I appreciate your honesty in sharing about your grief. Hang onto hope one day at a time. With my kids starting back to school next week, I’d love to plan a visit and help out however I can. You can reach me at 927-355-4644 or 817-637-9071.

  7. Thinking of and praying for you all. Your words here are love for each other and those around you are more beautiful than you know. I’m looking forward to a visit with sweet Claire next week! I loved the pictures of her in her new upright. She’s so beautiful.

  8. Tyler and Tiffany…I’m at a loss for words, as always, but want you to know I’m still here. Claire’s journal is the first thing I check every morning when I turn on my computer. Your use of the word “percolate” moved me, so descriptive of the situation. Your friends at the dental office are here for you…

  9. Thinking of you all and praying for you daily. I pray that you will continue to find the strength that you need to continue fighting for Claire and that God will give you guidance and wisdom to make these difficult decisions. I pray for peace in your hearts as you struggle with your questions and all of the uncertainty. It touches my heart to know that you are surrounded by prayer, love, and support through friends and your community.
    These words have been resonating with me the past few days. I hope they will provide some comfort to you as well:
    Philippians 4:6-7 today. “Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

  10. I’m thankful you have this outlet to pour out your emotions. You are doing such a great job of communicating them.

    Still praying!

  11. Hi guys, I don’t miss an update about Claire’s condition. I’m glad there is some progress and keep on hoping that there is gonna be more! Although I don’t write as often as before, you all are always in my prayers and will be. You are doing a great job! Never lose hope!

  12. When things like this happen, a natural reaction is to ask ourselves what we did “wrong” as you said in the Thursday message. I want to assure you that you didn’t do anything wrong–it was an accident and I would encourage you to see it as that. An accident is not wrong or right. It just is and we live with the results–whatever they happen to be. You are a blessing in all that you are doing for Claire. My continued prayers.

  13. Tyler & Tiffany:

    Have you heard about the Anat Baniel Method? I came across this site, and just wanted to put it out there for you as another option you can explore for Claire.

    There is a practitioner in Tyler, Texas… but maybe the staff at OCH are already implementing this or have presented this option for you.

    You continue to be in my daily thoughts. Sending much love your way!!

  14. What a blessing that Autumn and Heidi can stay in the same school, and you are all surrounded by that community of love and support. I pray with you that next year Claire will greet them verbally and joyfully when they come home. Tyler, thank you so much for sharing your emotions with us here. Feeling like you might be doing something wrong in your care of Claire is par for the course, I think, when you’re up against so many unknowns and so many decisions you and Tiffany have to make. But you pray, discern, make your decisions with the Holy Spirit’s help, and do the best you can. That’s exactly what you’re doing. If the results aren’t exactly what you want–Claire back the way she was, right now, of course you grieve. That’s natural. But it doesn’t mean you did anything wrong. You didn’t, ever. You sound to me like the most faithful, loving, giving husband and father imaginable. Give yourself a break, rest a bit, love your family, and keep on keeping on! And know how many of us are praying for and with you. Much love, Dodie

  15. Tyler and Tiffany, you said once that tending to Claire was like taking care of a baby. That’s who she is now: a precious baby. What you miss and grieve for so terribly is the Claire you once knew, but this new Claire has her own personality and needs, like a baby. I’m praying that someday after your much-deserved grieving period ends, you can completely accept her change with grace, gratitude and understanding. Whoever she becomes is the child of a rebirth, as it were. You’re so blessed to have her. She’s very special in her own way, as are Autumn and Heidi in theirs. Knowing that Claire will be her own self and learn at her own pace should give you much hope and joy. And you give her such love and devotion that she can’t help but get better and better each day. Be thankful for your own strength and weaknesses and know that what you’re doing is just fine. Actually, rather wonderful.

    1. Kay, what you wrote was beautiful and inspiring. May our God give strength and wisdom daily to Tyler and Tiffany.

  16. Have her therapists thought about using a communication device or a “big mac”? I know she displays her pleasures and discomforts, but theraputically it would give her opportunities to reach and push/tap. I have also heard that there is a communication device called “brain fingers”. This is where the child can look at a picture on a screen, and the screen will talk for the child. You can learn more about it on the website for the Children’s Center in Bethany, OK. They did a TV interview spot regarding this new technology.

  17. Tyler and Tiffany,

    You continue to be in our thoughts. I hope the Autumn and Heidi enjoy their first week back to school.

  18. Your words are so moving as always. What amazing parents and sisters your beautiful little Claire has. There is no doubt that your love and persevernce will result in huge progress for Claire in the near future. I have no experience with what you are going through but I can imagine that these must be the toughest days of your journey. You are always close to our hearts and in our prayers.

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