Monday, June 28: Update

My paranoia has increased a bit over the last four weeks. When I stay at OCH with Claire, I have to get up from bed to check if she’s breathing. I used to do the same thing when she was newborn. I’d make sure nothing could block her air supply. I’d check to see if she was covered up and warm. I’d check her diaper. I was always careful not to get too close or fuss with her too much, fearful of waking our sleeping baby. So I’d leave the lights out and dip my head close to hers so I could hear her soft breaths. So I’ve done this before. But it’s not the same.

I had no reason to think that Claire’s mechanical structure wasn’t operating properly when she was a baby. I was mindful of the external threats to newborns and guarded accordingly. She had her regular check ups and was always given a clean bill of health. My frame of reference changed four weeks ago. Now I am firmly aware that her once healthy body has been compromised. I am thankful that she is stable, and I am more paranoid about slight changes. While at Medical City, I would watch her oxygen saturation and heart monitor late into the night, convincing myself that  if it stayed constant for an extended period of time I’d be able to go to sleep without worry. I do it now with her breathing.

My paranoia does not stop with Claire. I was collecting our mail last week which is adjacent to the community pool where this began. I heard kids playing but the noises were ambiguous to my mind: were the sounds safe or distressed? I had to see them to put my mind at ease. Therein lies my struggle. My mind needs to be convinced through sight that everything is safe; however, my mind is tricking me into thinking that because everything is safe now, when I see it, it will continue to be safe for the foreseeable future. I’m tricking myself so I can sleep at night.

This is an aspect of what has been so world shattering to me and Tiffany. We loved our lives. We’d only had brushes with suffering until four weeks ago. We’d never met it head on. So we lived our lives as if the present, what we could see then, would continue forever. We’d never had to face our own mortality. We couldn’t fathom the far worse scenario of our kids’ mortality. So not only do we find ourselves grieving for Claire not being with us right now, we also miss the semi-charmed life we had. We don’t know how to live this one. We don’t know how to suffer. And until I figure it out, I’ll continue to recapture those little pieces of control to get me through the next few hours by checking on Claire while she sleeps.

Thank goodness she’s sleeping now. It took a while and my arm is tired from patting her back, but she’s sleeping soundly. I can hear her breathing – which keeps me from getting up to check – and she’s been going strong for almost an hour. We’ve got the beginnings of a system to make it through the nights and we hope it diminishes volatility through the nights. It will help her stay strong for her therapy sessions.

She needs her strength for the sessions. She did well today. The occupational therapist was very pleased with Claire’s progress and range of motion today. Claire also got to try laying on her belly today. A wedge aided her and the therapist was testing her neck strength. She gently told Claire to lift her head. Both Tiffany and I were excited when her neck muscles tensed and her head raised slightly.

The physical therapist exercised her neck more. Claire was challenged to hold her head upright while being held vertically. She did. The therapist then tilted Claire to her left so her center of gravity was off. He asked Claire to hold her head up again. She did. He tilted Claire to her left and told her to hold her head. She did. At center again, Claire dropped her chin to her chest for a rest from the energy expenditure. The therapist told her to lift her head up. She did. We’d been seeing more muscle control with her head in bits and pieces. This was the most glaring example. We enjoyed watching and encouraging Claire.

We found that Claire also responds to different message packages. When you nicely ask Claire to do something in a sweet voice, she tends to ignore it. If you use a standard voice and make it a command instead of a request, she tends to make an effort. It also helps to have a male voice: she’s responding to requests that originate from male doctors (and dad) more than female. Read into it what you will.

Claire had a number of visitors today. Papa, Nana, Autumn, Heidi, Bryanna and Brian all joined Tiffany and I at OCH. The girls were excited to see Claire again after a few days of missing her. Heidi talked to Claire first and reassured her that Claire would get better. Autumn soothed Claire by rubbing her arms and back. Claire responds very well to both of them. It helps us to see them all together.

Claire also got a visit from another near-drowning mother, Jeanne Damoff. When we first arrived at OCH, one of the nurses encouraged us and told us about a book we could read that is available in the OCH library. She couldn’t recall the title but would get back to us. She came back a couple of days later and my mom was reading the book “Parting the Waters.” The nurse saw it and commented, “I’m glad you found it!” We hadn’t found it. Jeanne had sent it to us. It’s her family’s story.

Jeanne shared pieces of her story with us today. She was generous with her time (thank you Luke and Sarah for sharing her with us) and her encouragement. She was our gift today. We hope to see her soon and meet the rest of her family.

Thank you as always for the prayer, support and hopes.

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48 thoughts on “Monday, June 28: Update”

  1. Wow, what a heartfelt post. Thank you for your transparency–your posts are often like a devotional. There are a lot of things I want to say and could say in response to what you said about suffering, but they can wait. Let me simply assure you that you are not alone in your struggles with this reality. Suffering takes many forms, and when I pray for you I am praying from a position of knowing–at least in some measure–similar encounters with suffering. Please also allow me to say that no matter how deep, how wide, how painful, how seemingly unbearable, God truly can be with you in suffering, and He can even ease the pain as He reveals His presence to you. That is my prayer for you and your amazing family.

    Sincerely,

    Kelli Hamann (a friend of Glenn and Ruth Rodgers)

    Psalm 23
    A psalm of David.
    1 The LORD is my shepherd, I shall not be in want.

    2 He makes me lie down in green pastures,
    he leads me beside quiet waters,

    3 he restores my soul.
    He guides me in paths of righteousness
    for his name’s sake.

    4 Even though I walk
    through the valley of the shadow of death, [a]
    I will fear no evil,
    for you are with me;
    your rod and your staff,
    they comfort me.

    5 You prepare a table before me
    in the presence of my enemies.
    You anoint my head with oil;
    my cup overflows.

    6 Surely goodness and love will follow me
    all the days of my life,
    and I will dwell in the house of the LORD
    forever.

  2. So glad to hear all the great progress. I eagerly wait for your updates everyday. Makayla & I continue to pray for all of you daily. Being there that Sunday & feeling so helpless, inspired me to take a CPR class.

  3. Such good news! I am so happy Claire is responding to commands! It is an amazing thing! I continue to think of Claire and your family often! You’re all in my prayers!

  4. Praying to many little miracles this week that remind you of God’s grace. May you have peace in your heart and rest in your soul.

  5. I’m so so happy to hear that Claire’s doing great things in therapy. What a girl! It’s so touching to see her with her sisters….and I often wonder what “siblings” are feeling. But you’re right – just getting them together…sharing the same space…is often just enough.

  6. Tyler, I hope your sharing your struggles is theraputic for you…in a way it is for me. I have been asking some of the same questions, putting myself in your shoes and trying to imagine walking in them for a short time. It is heart breaking. I ask God how to pray and when you are so very honest, it is confirmation, to me, that me prayer is being directed by him. I am asking Him to walk you through this and, when you need, carry you through this storm. We are so excited to read of Claire’s progress…even the tiny things are such victories. Thank you for sharing…..you are loved and lifted up!

  7. I so enjoy seeing the pictures you post. Thank you for sharing them with us. It is exciting to hear about the progress Claire is making. Thank you for the updates. Always think of you all. In continual prayer.

  8. We are excited to hear that Claire is responding to therapy!! GO CLAIRE GO!!! Proof again that she is a fighter!!!!

    We’re cheering for you all and praying for healing and peace for all of you!!!!!

  9. When Makenzie decided to hold up her head for the first time I was on the phone with her doctor. She was working with her PT. The PT called for me and when I walked in the room I found my daughter on her stomach looking up at me. The therapist smiled and said”look what your daughter decided to do today!” I bawled like a baby! 3 years later I still bawl when Makenzie does something new!

    Go Claire! She looks so good!

    Up until about a year ago I was hyper vigalint as well. I had a video monitor, I listed to it and ran up to check on her at every small sound. I turned the lights on to make sure I could see her breath and the list goes on! You are not alone! I still cringe anytime I hear anyone coughs and scan the room to make sure all is well.

    We are still praying for you and as a mother who has also been through a similar struggle and knows MANY other mothers who also understands, I want you to know we are here for your family and want to help in any way we can.

    Please do not hesitate to contact me at makenziesmiracle@comcast.net

    “Let us hold unswervingly to the hope we profess, for he who promised is faithful.” (Hebrews 10:23, NIV)

    Tons of hugs and prayers!
    Pam and Makenzie
    makenziesmiracle.org

  10. i’m so glad to hear about claire’s therapy today! what a trooper…i wish i could have seen her. i know it was a thrill for you and tiffany. i totally get where you are with checking her breathing and such…i hate how hard this is on all of you. but, i’m glad you had the whole fam there today…they are such a great support for your sweet family. hate that we missed seeing tim, but we’ll have to catch him next time. i’ve been thinking about you guys all day, and i’m hopeful that tiff was able to rest last night. we’ll keep checking the blog, and hopefully we can get out there to see you once we get back to tx. love you all…

  11. amazing developments for Claire today! YAY! I’m so thankful for her ability to respond to the therapist!
    I so understand your first paragraphs about the shock of having your life changed so quickly, so sadly. Our family experienced an illness several years ago…..and it has been life changing. I take comfort in knowing that God is WITH us every step of the way.
    I like this quote by Corrie ten Boom “Every experience God gives us, every person He brings into our lives, is the perfect preparation for the future that only He can see”. My prayer is that you all can rest in Him.

  12. Tyler,
    Thank you for being so open and honest with everything you guys are going through. It gives a great insight as to what to specifically pray for with all of you. We are still praying!

    I was SO excited to read about Claire’s progress with the therapy! Way to go, Claire!

    ~Emily

  13. What fantastic news you sent tonight! Claire’s trying to raise her head is a wonderful breakthrough, and I know you’re thrilled to see her do that as well as follow other commands.

    How sweet Heidi and Autumn are with her! Instinctively, they know what to do and are probably helping her more than you can imagine. There’s an unshakable bond there, and you’re so very fortunate. The photos are love personified.

    Tyler, I think all your feelings are good, and I marvel at your ability to express what you and Tiffany are experiencing with such candor and poetry. All of you WILL get through this together.

    Two chapters of Jeanne Damoff’s book are online, and I just read them. Perhaps your mother has already told you about the story, but I’ll add my two cents’ worth and say I found the beginning to be heartfelt and and sincere. An obvious leap of faith. I hope you both will be able to start it soon. I’m sure you’ll enjoy Jeanne.

  14. I somehow stumbled across your blog a few weeks ago and have kept Claire and your family in my daily prayers since then. It’s evident what an incredible and beautiful family you are and I’m so sorry that you’ve been going through this. Please know that you all and Claire have touched countless people who are continuing to pray for her. Blessings to you all…

  15. Reading your posts are an emotional experience for me. I remember watching my daughter’s monitor more than I watched her for the ten weeks she was in the NICU. She’s at home now and still on a monitor, and my heart skips a beat every time it goes off. Each night we go to bed, we hope it’s an event-free night, and it is so heartbreaking when it’s not. Life has a funny way of reminding us how fragile we really are. So fragile and so precious. We continue to hope for the best for your family.

  16. So glad to hear of Claire’s progress. We are thrilled that she is responding so positively to her OT and PT sessions. She has a large cheering section, here in Oklahoma. We will continue to pray for encouragement, strength, and healing for Claire and for all of you. You are all facing many challenges, but the Lord will not give you something that you cannot handle. May the Lord bless you all and keep you strong.

  17. What a great blessing that Claire was following commands today during therapy! It is funny what you said about the fact that she tends to respond better to males than females. I believe it is kind of innate in children that mom is comforting and loving, and while dad is loving, he expects a little more (it just always seems to work that way). Hopefully Claire will be able to progress even further now that you have found a key to her responding…use it and know that you are helping your baby.

    I know that you don’t know me, but I can tell you that I have spent 15 years working as a paramedic, and had mulitple experiences with families who have gone through exactly what you are going through right now. I hope it brings you some measure of comfort to know that anything, and everything, you are feeling right now is completely normal. There is no guide on how to get through this, but I know that your faith in God is a great hand to hold.

    I am praying that you and your family have peace and are able to rest, and that each day gives you as many blessings as challenges. We will continue to pray for your sweet Claire as she recovers. God bless your family!

  18. amazing that you are still able to share your story of sorrows and joys each day, Im trying to put myself in your shoes, and I just want to continue to lift you guys in prayer, I know the support is much needed even if you do not not know us. May God continue to comfort you and your family, and especially Claire.
    God please continue to touch Claire’s little body, heal her and continue to give her your strength to keep improving daily.
    thank you for the continually updates
    christina roberts

  19. Tyler and Tiffany~
    There are no words to say. God bless you both as you walk this journey with your three little angels. Tyler, your words speak to me so much as I recall my unplanned stay at Phoenix Children’s Hospital when my three week old son contracted bacterial meningitis. Now, three years later, your words brought me back to those nights in the hospital. No parents knows what it is like until they’ve had a child needing such delicate care. Your little one remians on my heart.

  20. Tyler,

    I remember nights in the hospital with Justin. I can tell you they can be a challenge,which you already know. One of the best supports I have had over the years has been my dad. He has helped me through many a challenge. You know how much he loves our Lord and he reminds me of this all the time. He one time sang to me “How can I Keep from Singing” I now think of this song whenever I am especially challenged. This is the verse that sees me through:
    No storm can shake my inmost calm,
    While to that rock I’m clinging.
    Since love is lord of heaven and earth
    How can I keep from singing?

    Call Grandpa and ask him to sing it to you. I’m sure he will.
    I’m pray for you everytime I think of you (whih is often)

    Love to all,
    Aunt Mary Ellen

  21. Thank you for sharing your journey and your intimate thoughts and feelings. Your entries are poignant and they strike deep in the hear of all of us reading. You all are in my thoughts and prayers. Praying that God will give you the strength you need to conquer this storm. Praying that Claire will continue to take such great strides in healing and achievement.
    I’ve been spending some time in reflection over this verse. I’ll pass it on to you:
    “Be strong and courageous! Do not tremble or be dismayed, for the Lord your God is with you wherever you go.”
    God is with all of you, Tyler.

  22. Good morning…it’s Kelly again from your dental office. Claire’s Blog is the first thing I check every morning when I turn on my computer. Your post yesterday was amazing, the candor and honestly moved me. We continue to pray for your family and have every hope everything will work out.

  23. There are really no proper words to say; no way for me to ease your breaking hearts. I know people would tell me everything happens for a reason, God never gives you what you can’t handle… etc. Everyone meaning well, but never knowing quite what to say. Unless you’ve been there in the NICU or PICU feeling the pain and feeling that heavy worry in your heart you just can’t truly know what this experience is like. My husband and I too very much felt we had that same charmed life, never did we expect that life would deal us such a hand. Granted our journies are a bit different, as we have no knowledge of our son any other way since his injury was at birth. But our challenges are many. I continue to pray and think of your sweet Claire, miracles happen everyday and we continue to believe always.
    Many blessings and prayers,
    Stacy, Chris & Little Noah
    http://www.noahsmiracle.blogspot.com

  24. heart wrenching. i’d want my old life back too, and i think this period of control is part of that grieving process. thank you for so eloquently sharing this journey.
    i feel like cheering every time claire has a tiny victory, and i cry for this time of uncertainty for you and the rest of your family.
    praying for you as you learn to live in this “new normal” and so thankful for the community that is loving you so well.

  25. So good to hear about her good therapy. Even the smallest thing is a milestone. My granddaughter has been on her journey for 3 1/2 years…she has a long way to go but each day brings something new in her improvement. Prayers to you and your family.

  26. YAY Claire!!! How exciting to hear about her progress!!!
    God is working on her and you as well. He will continue to give all of you the strength needed for this journey.

    Prayers continue…

  27. Tiffany and Tyler,
    I am so glad to hear that Claire is making progress. I can’ t even begin to imagine what you are all going through right now. My thoughts and prayers are still with you.

  28. Tiffany and Tyler,
    My heart breaks to read what you’re going through. So many of us don’t realize the blessings we have and complain about the small things. I’m so sorry you’re having to go through this and I continue to pray for you and your family.

    I’m celebrating the changes in Claire and how well she’s doing with her sleeping and therapy, she’s come so far and is doing so well. Be encouraged by these things. Keep turning to God for help and HE will be there for you.

  29. Tyler and Tiffany,
    I love your candor, the sensitive honest thoughts you share here. You’re healing, too. Your life is different now. Just as you realize the ‘idyllic’ life you had, there are surely parts of this new life that have those kind of moments, too. As you climb this new mountain – there will be beautiful scenes that you won’t want to forget. You are sensitized to recognizing them now.
    Who know all the Lord has stored up for you! – Lynne

  30. Hey Guys,
    It was so good talking to both of you last week. So excited to read about Claire’s progress!
    Give Claire a kiss from me and Railey and tell her how much we love and miss her.
    Love,
    Ricki

  31. Tyler And Tiffany,
    I, too, am someone you do not know. We do have a mutual friend, Joanna Kuntz…her little boy, Sam, goes to sunday school with Claire…anyway. She told me about the accident some time ago and I have been following your blog and just praying for you all everyday. I hear the pain in your heart and I hurt along with you. I can’t even imagine what you are going thru, but I do know that God loves you so very much, and He loves Claire even more than you do. I get the feeling from reading your journal that you are heavy with guilt. If for no other reason, God prompted me to send you this note. You are not to blame, no one is…He is hurting right along with you…sharing every tear. His great love and compassion will heal you if you will give all the anger and guilt to Him. There is a “kingdom” purpose in all of this and someday you will be in a situation that you will look back and know that “this” is why we went through all this pain. Don’t let guilt turn to bitterness, it would put a wedge between you and Tiffany and that would be tragedy added to tragedy. Let this bind you together even stronger than before…God will be in everything, every step of the way…you will never be alone. I pray you will not think me offensive…I really care deeply what is going on with your sweet family and with your Baby Girl. God’s Blessings and Peace …Praying…Sandie

  32. WOW, you are an amazing writer. Every word is so intense. We feel we are there with you and your family. Thank you so much for the updates. We feel your pain more than you know. It’s a long road but we will be there with our support in any way we can.

    Love and prayers will be with you always.

    The Marcaino’s

  33. Therefore, since we have a great high priest who has passed through the heavens, Jesus the Son of God, let us hold fast our confession. For we do not have a high priest who cannot sympathathize with our weaknesses, but One who has been tempted in all things yet without sin. Therefore let us draw near with confidence to the throne of Grace, so that we may receive mercy and find grace to help in time of need. Hebrews 4: 14-16

    Romans 12:12 rejoicing in hope, persevering in tribulation, devoted to prayer.

    Our church family is praying for you. your pain is great, but His was greater, and He has a Sovereign purpose for this trial of your family. I trust that you will “Humble yourselves under the mighty Hand of God, that He may exalt you at the proper time, casting ALL your anxiety on Him because He cares for you.” 1 peter: 5:6,7

    His words of comfort are far superior to ours.

  34. One more thing: Remember He could have called down angels to swallow up those who wished Him harm. It is normal for us to want to do the natural thing: desire what has been taken away…I am sure Christ thought about what He had given up in heaven to come to die for us. that is why His comfort is so perfect.

  35. Tyler,

    It’s not “paranoia,” it’s “hypervigilance,” the word others have used, from the trauma you and Tiffany have been thru because of the trauma Claire’s been thru. As a parent you expect to be able to keep your kids from harm (Grandma Rae, MY mom, expects to be able to keep ME from harm; she’s 95 and I’m 65!) But you can’t always. This was an extreme case and somehow you both need, in your own ways, to eventually let go of it. That will take a long time. Be gentle with yourselves in the process.

    Part of getting over it is watching Claire’s progress. It sounds like her responding to commands and using her neck muscles was wonderful progress. As, I imagine, is watching how wonderful Heidi and Autumn are with her. Those pictures show such love and acceptance and desire to help. That’s another tribute to your and Tiffany’s wonderful parenting. Part of your current suffering comes from how much of yourselves you throw into your roles as parents, and how fulfilled it makes you. When a piece of that is torn from you, you suffer. Remember, even when you walk through the darkest valley, God is with you. As clearly, are your families, your many friends, and many, many who used to be strangers.

    Early Wed. morning I’m leaving for a week in Spearfish with your Grandpa and Grandma Simons. Very much looking forward to the quiet, and to summer (it’s still in the 60s in Seattle) and to lots of catching up. Will be keeping up with your blog too.

    Love and prayers,
    Dodie

  36. My heart continues to ache with and for you all…
    I LOVE to hear about the progress Claire is making… you go girl!!!
    We would love to visit you at OCH… are you all ready for visitors yet???
    You are all in our daily prayers!!!

    1. I love how eager you are to see us! 🙂 I think we are still taking it day by day, and right now, it’s helpful to keep visitors to a minimum. We are so thankful for all of you on this blog. I literally come to read the comments when I feel like I am empty. Hopefully soon, we’ll be accepting more visitors… day by day.

  37. Tyler, I have been following Claire’s journal every day. I love your heartfelt messages. I was so excited to read about Claire’s strong neck muscles and how well she is following therapy commands. Every day I hope will be the day I read about her first smile.

  38. Tiffany and Tyler: please know everyone in the Journey Class @ IBC is praying for you guys… It is a privledge for me to call IBC and this class my home and friends.

    You have a wonderful family..both personally and at church.

    “I cried to the LORD with my voice, and He heard me from His holy hill. I lay down and slept: I awoke for the Lord sustained me” Psalm 3:4-5

    1. Jill–
      I can’t tell you how much love we have felt from you. I am overwhelmed by all you have done. I’m frustrated that I have yet to meet you. Thank you for breakfast and dinner and so much more. I know the girls are going to love making that dessert… what a creative idea! Thank you for putting aside so much thought and effort for our family. You are such a blessing.
      Tiffany

  39. For some reason, the pain and suffering will bring your life greater joy even though it is hard to imagine now. What a miracle that she is making such wondeful progress. Claire is giving other people so much hope in their lives. All of you have touched so many people in ways that you cannot imagine. It is a hard journey for you but you are giving others many gifts of hope and understanding of life along the way. Prayers and angels with you everyday., Joane

  40. I’m glad u got time w Jeanne Damoff:) btw u journal beautifully..I read every one..u write in a way that draws a clear picture of both surroundings n emotions, helps us understand wellll. Prayers:)

  41. Dear Tyler, Tiffany, Claire, and the rest of your beautiful family. We don’t have internet access at my dad’s place in Avon, so this is my first chance to get online since my visit with you. I’m so thankful for the opportunity to meet all of you and to spend time with Claire. I love that now I can see her sweet face in my mind, hear her breathing, and feel the softness of her hair. Being with all of you has intensified my prayers. I still hope to come back by on the 11th.

    I mentioned the visit to Luke and Sarah. They may not be available to come with me at that time, but they said they’d love to drop by and see you on their own sometime if that’s okay.

    I just read all the posts you’ve written since Monday, and I remain so encouraged for Claire. I’m especially happy to read that they’re using a tilt table now. That piece of equipment was a big part of Jacob’s recovery as far as getting back on his feet.

    Thank you for pouring out your heart in this journal. You write beautifully and your words light a fire under my prayers.

    Much love and hope to see you soon,
    Jeanne

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