Saturday, June 26: Update

Tiffany and I are handling some of the emotional aspects in different ways. We’re supporting each other through our various coping mechanisms and it’s stretching us in ways we hadn’t foreseen. We are both missing Claire: we are shocked that it has been nearly a month and heartbroken that it has been that long since we saw Claire smile and heard her voice. Tiffany has been looking at pictures of Claire and listening to her voice on our digital recorder as comfort. It makes her feel close to Claire again especially on nights like tonight when we’re both away.

I can’t look at the pictures or listen to recordings of her. I was despairing a couple nights ago while I was staying with Claire because I was having a hard time remembering her voice. I was reliving a week prior when she had dressed in her princess dress and asked me to be her prince. She told me to stand at one side of the room and to say “Do you take this woman to be your princess?” What broke me was that I couldn’t hear my princess’s voice in my mind. I could only hear her as she is now. My heart hurt.

Tiffany encouraged me to listen to the digital recording. My reservation goes deeper than just the suffering from missing her. I want to hear her voice not as it was but from her mouth. I am working against the tendency to think about what was and focus on what will be. I don’t want to betray my hope that Claire will again have the same voice and personality. But this is not Tiffany’s path.

So I joined Tiffany on her path tonight. Tiffany needed to see Claire and grabbed Claire’s album. I stood beside her and cried with her while we looked through her most recent birthday pictures. We hurt together, some of the pain the same, some different, and we remembered Claire as she was prior to that day.

While we have some differences, we have the same goals and desires. Tiffany and I may not understand each other sometimes, but we do support and respect each other’s needs and mechanisms to meet those needs. While it was hard for me to look at the pictures, it was good to be emotional together. It feels like it has been a long time since we last had the opportunity.

These thoughts and events followed a good day for Claire and me. I was the overnight caregiver for Claire last night and we had autonomy until 3:30 PM CDT today. Claire had a more predictable night of sleep last night and was able to collect about 10 hours over the course of it. Between getting up to change her diaper, her feed line and reposition her, I was still able to grab about 7 hours of sleep. We were both sufficiently rested for today. We started the day with an hour and a half of physical and occupational therapy directed by yours truly. Claire took a nap in her bean bag chair in preparation for the day’s biggest event: I took Claire outside for he first time since this began.

Claire’s previous wheelchair ride attempts have ended with increased overall agitation and contempt. The movement, light, sights and sounds were unwelcome and overwhelming. Today was different. Claire was much more subdued and seemed to enjoy the ride. We spent 15 minutes in the lovely Dallas heat, grabbing a little sun and letting Claire feel the breeze against her face. I was very encouraged by her agitation level during the trip: it was almost non-existent.

It was nice to get Claire outside. She has always loved exploring outside. It just felt more healthy to be out and about. I enjoyed watching her open her eyes, pupils contract and eyes search the sky. It did both of us good.

Claire spent more time out of her bed today than in it. We are making a concerted effort to make her days more active, so we can work on recovery and make sure she is sleeping through the nights instead of the days.

Aside from a somber evening, I enjoyed my day with Claire. I enjoyed seeing her agitation levels moderate. I am hopeful that a productive week is ahead.

My apologies for he belated update. Thank you for staying with us, prayers, hopes and all.

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38 thoughts on “Saturday, June 26: Update”

  1. its really excites me to see claire progess and i am sending you a gift for claire you should recieve it on monday and it is going to go to your house. LEt me know what you think of it. YOur really going to like it. Hope to hear from you soon

    your loving brother
    mike

  2. Praying for you and Claire here in California many times every day! I offer every Sunday mass up for your family. Calling on all the angels I can think of. God bless you all! And hooray for some sunshine outside today!
    Colleen

  3. It’s so nice to hear that Claire got to go outside today! Hope this becomes more of the norm for you all!! Being outside is just so good for everyone!!!
    Thank-you for allowing us to be part of your personal, vaunerable and emotional journey. It rally helps us to know how to better pray for you all.
    Every time I read a post of yours, I always wish I had some kid of super power to help you! Tonight I would be “Remember Girl” I would zap you and you’d remember Claire’s voice and where you left your keys! 😉
    I would zap my husband and myself a few times, too. Then my kids! I think I’d be a great super hero!!
    Love you all!!
    Hope this made you smile!!

  4. Tyler and Tiffany, I’ve been following Claire’s story for a while, and must say that this post was both heartbreaking and life-giving. Your love for Claire now and commitment to even the painful parts of memory while you support each other and Claire is so wonderful. Keep fighting the good fight. There are hundreds of people all over the world praying for you guys and for Claire.

    Melissa Sorensen

  5. Tyler, Of course u and Tiffany are going thru this difficult time with different emotions. U are a guy! [smile] We are preparing for our church service this am and my heart is praying for all of u. The updates are so special to everyone. Thank u for sharing with us- I am sure there are many of us who have not met u and I can only say how blessed we are to be able to share this with u. I am sure being able to put these feelings in print do help u. We await the day when those words say Claire is out of the hospital and healed…..GOD IS GOOD – ALL THE TIME. [ and we await the day when we are in Texas and can meet u and your family.]May our Lord continue to uphold u all…..the Lindsays Am. grandparents from Connecticut

  6. I assume you and Tiffany have discussed this obvious point, but if you take a whole lot of incremental steps of improvement…steps that are hardly discernable, but positive nonetheless…then eventually they lead you to a far different result. While I continue to pray for a miraculous, sudden awakening by Claire, maybe the miracle is in these small steps.

    I just can’t express how much I love this child I’ve never met.

  7. We love you and stand with you – you don’t know me from Adam’s house-cat, but we love you just the same. =) I pray for you as a husband and father, for Tiffany as a wife and Mom – both of you as parents of three daughters……you have blessed me in ways you will never know.

    Always prayerful,

  8. What a precious picture of Claire! She does look peaceful and relaxed. I’m so thankful for the great day that you had, and that you got to take her outside. It’s so sweet to see the support you and Tiffany give each other – how helpful that is for you and for your family.
    Praying for you – always praying,
    Susan

  9. Tyler and Tiffany, You do not know me but my prayers are with you and your beautiful little Claire I am glad she is making progress everyday …… You have many many people praying for your family God is hearing us all and making Claire better everyday….. Hugs and kisses to Claire…

  10. Yay! the great outdoors!
    As she grows less agitated, maybe could do some flower therapy – look, smell, handle, rub on cheek [ no eating ] and rock therapy [ no throwing ]?
    Frog therapy? [ no eating or throwing ]
    So glad she is less agitated, and slept more – sleep heals.
    Looking forward to Claire going fishing too!
    Love and prayers,
    Care to the caregivers,
    Susan D.

  11. This photo looks like Claire is holding the Lamb of God close to her heart…I’m sure He’s doing the same.
    May His strength and love guide you.

  12. You are both so strong. It amazes me how much that pours out into all you do with Claire in the midst of the pain you are experiencing. It is so uplifting to read your daily thoughts. To know that you are so genuine and sharing that with the rest of us strangers. Just as we cry with you, we smile with you. In our continued thoughts and prayers.

    Thank you.

    P.S. I miss seeing Tiffany take my son Malakai into her Sunday night class. I have great hope to see her and Claire again soon.

  13. I love the little lamb Claire is embracing in the photo. A good reminder that Jesus is our Good Shepherd and goes before us always.

  14. Tyler and Tiffany,
    I am so sorry for the emotional toll this path is taking. I can only imagine the “what ifs” that haunt you. I hope and pray that you two will grow together as you fight for your little girl. We love your family, and continue to be beside you in your journey. If there is anything your family needs…Please ask.
    Gina

  15. We read your words and we cried with you. We feel your pain and wish we could just wash it away. You will always be in our prayers.

    Love,
    Diane & Rocky Marciano

  16. I am so happy to hear that Claire is improving day by day!! I really enjoy reading her updates///I continue to pray for her
    Keep up the faith!!

    Lee Ann

  17. Tyler and Tiffany,

    Thank you for sharing the vulnearablities of the different ways you cope, and the story of Claire asking you to be her prince–how precious! So glad you had a good day yesterday, less agitation, more sleep, out in the sun. She looked so cozy, wrapped around the Lamb of God in her sleep. Little steps are progress, and add up. My prayers continue.

    Love,
    Dodie

  18. Dear Tyler & Tiffany,
    My heart just breaks for you guys and I cry along with you in your updates. I know that you don’t know me, but I just love your mom, Tyler. I am from CO Springs and Mountains Springs Church.
    I want to give you a poem with words of encouragement…

    ‘A Hug from Jesus’

    When life seems unfair
    And you begin to doubt.
    Remember Jesus,
    And what His love is about.
    He’ll always be there
    When you need Him the most.
    Keep your faith in Jesus
    And the Holy Ghost.
    Take a hug from the arms of Jesus.
    In His arms you’ll be safe there. You’ll see.
    He bled and died on the cross for us.
    So forever with Him we will be.
    When you’re troubled.
    ‘It just couldn’t get worse!’
    Think of a song, a poem or a verse.
    Think of our Lord
    And what He has done.
    Because Satan has lost!
    And we have won!
    Take a hug from the arms of Jesus.
    In His arms you’ll be safe there, you’ll see.
    He took the pain of death to the cross.
    So forever, in Him we’ll be free.

    ©2002 Copyright by Lora D. Strang

    Thank you for sharing your heart

  19. I’m so glad Claire’s agitation is down. My husband and I continue to pray for Claire. Your updates are so real and beautifully written.

  20. I love that you got to see a glimpse of Claire today when she was searching the sky. I continue to pray for ya’ll alot and am encouraged by each thing you write. It must be hard to hear her little voice. How glad I am that it is recorded.

  21. First, please know that my family will stay with you all the way. We talk about all of you as though you’re old friends. Things like, “What’s Claire doing today?” “How are Tyler and Tiffany?” “Has Tiffany’s mom settled in with Heidi and Autumn?” You know, familiar stuff.

    And we’re in tears when you are, especially after today’s post. We literally feel your pain, so be assured that you aren’t carrying it alone. Ever. We didn’t know Claire before the accident, but what we see now is a beautiful little girl who’s very much loved and cared for. And wherever her path takes her, she will always be the adorable princess you knew, the lovely princess she is now, and the even more precious one to come.

    Tiffany, I’m so glad you were comforted and feel closer to Clarie by looking through recent photos and videos. That’s so important. And, Tyler, how brave you and Claire both were to venture into our lovely Dallas heat! It was good to hear that she seemed to enjoy it so much.

    God bless.

  22. Just a short note to say, and to let you know that we thinking and praying for you all daily. Give hugs and kisses to everyone in the family.
    Uncle Andy, Aunt Susan, Alec and Eric

  23. Just thought of another thing! Remember how thrilling that first drop of pee was? And now changing Claire’s diaper is routine. That’s what her small steps are like. They sneak up on you, and eventuall, they’re big steps. God, and many praying people, are with you every step of this long way.

    Dodie

  24. She looks so lovely in this picture. I’m so glad you could have some time outside. It’s so healthy receiving a little bit of sunshine. Love you all so much. You all are every night in our prayers.

  25. Thank you for the updates. It is a blessing to hear of the positive changes in Claire and good to hear all that is being done for her. My heart certainly goes out to you and your family. My daughter told me today she had signed up to receive the updates but hadn’t been getting them. Would you mind adding her to your list? Her name is Suzie Green. Her address is sgreeen1000@yahoo. com. She also attends IBC.
    Thank you.

  26. My heart aches for your family as I read your posts. As a mom, I just can’t imagine the pain. Continuing to pray and ask Jesus for healing for Claire, and for peace and strength for you as you journey through this!

  27. What a beautiful post for so many different reasons. My thoughts are with you and sending strength your way.

  28. Tyler and Tiffany….you have both been so strong and everyone is praying for you to continue with the great strength and courage you have been showing. As everyone, I can’t imagine the depth of your pain, but I do know that even though it might be hard to understand, God is always with you.

  29. Claire looks like an angel in her bean bag. So comfortable with her baby cuddled close. I am touched by every day’s update. And this one, recounting how each of you longs to hear her voice, was especially moving. When she calls your name again, perhaps it will sound the same. For you all, I hope so. But truly, as you say, simply hearing it will be a gift.

  30. Tyler & Tiffany-

    My husband and I came to a similar conclusion (that we have very different emotional processes) after a difficult season that we had been in not long ago. My husband is a very external, verbal processor, and likes to talk about things from every possible angle. I like to process quietly, inside my own head, and talk them through when I feel like I’ve made some progress in my own thoughts. I came to the conclusion that it is imperative that we learn to give each other the space that we need, but to also commit to coming back together periodically. Otherwise, we end up working through the most challenging times alone and apart, which is the worst way to do it! I remember saying to him “I need for you to not hold it against me that I need to retreat into my own thoughts sometimes.” Of course, I needed a dose of my own medicine as well. It is so hard, but I feel like it is absolutely the right thing to do – to give each other permission to process and navigate in the ways that make sense to us, but not to assume that the same things bring comfort to the other. So I am trying to learn not to hold it against my husband that he will ALWAYS choose to talk it out rather than think it to himself.

    The most important thing is that you both are feeling the permission to explore the ways that work for you individually as well as together, as a team. Again, you and Tiffany amaze me. You are handling yourselves with such grace and authenticity, and there are alot of people watching and learning from your example. Praying for you guys.

  31. Your story about the princess dress and Claire asking if you would be her prince gave me reason to chuckle. It sounds just like my daughter who likes to act out a wedding but does not yet understand the words in the marriage vows. It has become a running joke in our house when she says, “With this necklace (imagine Mardi Gras beads) I be red (her interpretation of ‘I thee wed’).” It’s funny how those memories stick with us. We hope that you will soon have even more precious memories to reflect on.

  32. It may be a silly thought on my part, but have you considered replaying these recordings of Claire to Claire? I wonder how it would stimulate her. Much like the reminders given to those with amnesia, I imagine it is possible to trigger or stimulate the mind with her own past.

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