Thursday, July 1: Update

Autumn had a breakdown today. The drawn curtains and somber mood took its toll on her while Claire cried in the background. She needed to escape.

OCH has a nice garden sitting area that is conducive to emotional talks. Between tears and sniffles, Autumn told me that she wanted her sister back just the way she was. She remembered how Claire would hold Autumn’s hand at night before they went to sleep. She remembered how excited Claire would be to see Autumn after school days ended. She remembered a time that Claire was angry and Autumn laughed at her. She told me how sad she was that she’d done that to Claire. She told me how much she missed Claire. She told me how often she hopes that this is all a dream.

I recall all the times I’ve told my girls that “It’s all right,” or “I’ll take care of it.” I couldn’t reassure Autumn with those platitudes this time. Autumn wants to know that her baby sister will be the same. It’s hard to tell your eight year old daughter that she has to wait and see if her little sister will be how she remembered. We’re trying to balance having honest, candid discussions with Autumn and Heidi while still protecting their claim to childhood. It’s hard.

We decided to take a walk with Claire to decompress. Heidi had made a 4th of July visor for Claire to wear. We laughed when we put it on her, but we were surprised at how well it worked for our walk.

Claire also got some new equipment upgrades. Claire is sporting some new splints for her arms, feet and elbows now. She’s graduated from her old splints because her muscle spacticity is improving. She is now in the middle school of splints: we hope she moves on to high school splints soon which are custom fitted.

Claire also got a sporty new weighted vest. The weight and pressure help Claire feel secure and safe. We hope it helps further moderate her agitation levels.

Overall, there were not any major news events today. Claire continues to do her exercises with Tiffany and me and reluctantly attends her therapy sessions. Her flexibility and range of motion continues to improve. Her agitation continues to moderate. We celebrate these little victories. Thank you for celebrating with us.

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26 thoughts on “Thursday, July 1: Update”

  1. What an endearing little girl Autumn is…so sweet and innocent! It’s awesome she has wonderful parents to help her through her emotional rollercoaster. So happy that Claire is graduating quickly with her splints. That is awesome. I truly love to see your updates!

  2. By the way, I love that garden sitting area. Have you met Miss Julia yet? She volunteers to take the kiddos for a walk or sit with them to give parents a break. She spends a lot of time in the Child Life Activity Room on the first floor. She’s a sweetie!! We love her and Maddie used to take lots of walks with her!

  3. There are no such thing as little victories… they all sound so huge to me!!! I am so happy that she continues to make such awesome strides. And you and Tiffany are truly incredible parents… you always have been, and you always will be!!! Looking forward to getting those pink Converse tennis shoes for Claire as soon as she starts walking!!! All our love!!!

  4. I sit here reading this & can not help but cry with Autumn. Tell her that she is NOT ALONE! We continue to pray for each & every one of you…my children continue to pray especially for Claire, Autumn & Heidi. My daughter received a new American Girl doll for her birthday, she named her Claire! Thank you for continuing to update us!

  5. Even though y’all don’t know me, I love you all. Everyday day I look forward to “my” update. I am so proud of each and everyone of you. Such hard working troopers!. Thanks for inspiring me and allowing us to be a part…xoxo pat 🙂

  6. Hugs to all of you! I know my boys would have a hard time if something happened to one of their brothers. Kids are so adaptable, but I know they prefer things the same. You all are so strong I know you will get through all of this uncertainty. I will continue to keep all of you in my prayers!

  7. You’ve probably been anticipating Autumn’s breakdown for a while now without realizing it. Eight-year-olds can handle just so much, and it’s gratifying to hear that she finally gave vent to her deepest fears and concerns. I can only imagine how helpless you must have felt when you couldn’t reassure her that everything would be the same as it was.

    You two wonderful parents seem to be constantly on a never-ending tightrope. Along with juggling so many different balls. And all the other cliches that go along with your vigil.

    Please feel good about Autumn though. Heidi may follow. I was the big sister once upon a time, caught in a dilemma about a little brother with a minor birth defect. Everything turned out just fine for all of us those many, many years ago, but I remember the confusion and the surgeries and my parents’ distress. It’s hard to understand all of the particulars when you’re a kid.

    No one ever gets to live the perfect life. Not really. Actually, I don’t believe we’re here on this earth to do that. I don’t think “perfect” comes anywhere near the definition of being human.

    But it’s so heartwarming to hear about Claire’s daily progress. Your posts seem more positive these days when you talk about how much better she’s doing in therapy sessions. You also seem to be getting more and more encouraging reports from the medical staff. I really liked your clever analogy today of Claire’s being in the middle school of splints!

    Take care of yourselves and know we’re all still here.

  8. Oh my sweet Autumn. I am sorry that your little heart is hurting. I know how much you love your little sister. I am proud of you for talking about your feelings and glad you were able to cry about it. God gave us tears for a reason. It is good to cry, it helps us feel a bit better. I love you so much! You an awesome little lady.
    Auntie Shell

  9. You all continue to be in our thoughts. My Emma has a special bond with our youngest Evan, and the thought of Autumn hurting for Claire just pains my heart. I am glad to hear of Claire showing improvement through therapy.

  10. Glad to hear that Claire and you’all are working so hard. We will be praying for the girls. I know that God has given you wisdom in all of this. Our Father will not leave you. I know sometimes it feels like he isn’t there but he promises that He will never leave us or forsake us. I pray the his Holy Spirit is surrounding you and all your family.

  11. Poor little Autumn:(
    I also have an 8 yr old daughter so I understand what you mean about “honesty” and “still protecting their claim to childhood”. Looks like you and your wife are doing a great job with all that so far:)
    We are still thinking of you all and praying each and everyday for Claire…..

  12. I can’t imagine how difficult it is for you to have this talk with Autumn. It broke my heart to read about her thoughts. I think of your family so much.

    I’ve had trouble explaining to my son he has to wait on something as simple as his favorite PJ’s in the washer. He’s just a kid, just wants those PJ’s and doesn’t understand he has to wait for them. Mommy & Daddy always fix everything and come to the rescue. In his mind, under our clothes, we have “Super Hero” suits, because there is never a problem we can’t solve.

    How incredibly painful it has to be for you to explain to your girls they have to wait for their baby sister? They’re just children, how can they possibly understand. And how helpless it must feel to not be able to assure them.

    It absolutely breaks my heart and I’m so very sorry your family is going through this.

    I pray for Claire every day and feel incredible sadness because she is in the hospital and your family is separated.

    I cannot express how much I want Claire to be better.

    Much love,
    Debbie

  13. I truly look forward to reading your blog everyday. Even though I cry almost everytime. Thank you so much for taking the time to keep us all updated. I feel so sorry for Autumn. She is at such a young age that it is hard to understand. However I’m happy that Claire is moving up with her splints.

    Always thinking about you and your wonderful family,

    Kristen

  14. Just wanted to let you know that you have my prayers and that you are not on this journey alone – you have a great many followers, crowd of those along the road, cheering you on. When the days are tough, stop and listen – we’re here for you. Don’t give up – we are interceding on your behalf to a sovereign and mighty God who will not let you down and will give you the strength you need, day by day, moment by moment, second by second. Precious in His sight, is His little Claire, your baby girl and all of this – He is working together for her good. He will not fail you…

  15. Sweet Autumn! How difficult this must be for your older girls yet how lucky they are to have parents that will sit down and be gently honest. Every member of your family is bound to have their breakdowns. The fortunate part is that when one person is down some one else is strong and can help them through.

    Please keep on providing these posts, I think of your family often and can’t wait to hear of the progress of the day.

  16. You are seriously good parents and there is never a time where I read and think you haven’t said exactly the right thing to your older daughters. We have three girls too, and the emotional load you are carrying is great. I check on Claire every day, pray for your stamina and that in the midst of the greatest challenge you’ve ever faced, you’ll see the greatest God show up. From Norman, OK

  17. Tyler,

    It has been awhile since I was afforded the opportunity to review Claires progress. It is awesome to see her progressing with therapy and able to rest more comfortably. PRAISE THE LORD!

    I read your words on wanting to tell Autumn that it will be all right and couldn’t stop thinking at how that relates to me and frankly all fathers. It is our natural urge to protect, comfort and “fix” things in our families lifes. It breaks my heart when I have to leave the 100% reassurance comments(that is worldly all right) out of our family discussions as it does to hear you communicate the need to be open and honest with Autumn. This is just one of the many things that keep our lives from being perfect. Thanks for being open with all of us.

    BUT

    I also was able to read about Claires progress and a family that is working through one of lifes difficult moments. It may not seem like it today, but I believe you can say that things will be all right. I believe that God is strengthening and healing your family by giving you moments such as these with Autumn. The bonds of trust between a father and a daughter are being strenghtened by God, perhaps without you even knowing it.

    Maybe life and Claire will not be the same as before the accident, but life with Claire after the accident will be just as rewarding. Trust that all of these little life moments, therapy victories, questions, and family visits are GOD’s way of making things ALL RIGHT.

    Trust that GOD provides everyone of Claires breaths. He is caring for her as he is caring for you and the entire family.

    Say hello to everyone, including nana.

    Jim

    1. Wow Jim. You don’t know me but, wow. Nice post. 🙂 Tyler’s post had me sobbing for Autumn and you’re post made me feel better for them. That’s funny how words of comfort to the family can help people like me who are just outsiders looking in. Though this accident happened to Claire, my prayers of healing go to her but my heart aches for Tyler, Tiffany, Autumn and Heidi.

      1. Elizabeth,

        Thanks for the kind words. My wife Gina and I are like you, we sob at almost every posting and while reading the comments. It is amazing at how God uses all of us to help the entire community.

        God Bless

  18. God Bless you and all your girls. You have such a strong and loving family, you are blessed. God has a plan, of that I am sure. Claire is such a little angel, and her sisters too. How sweet a big sister is Autumn? Cute visor. I cannot even imagine what your heart truly feels, even through your wonderful descriptions. I pray that Claire comes back to her former self, and I can only sympathize about the horrendously long road ahead of you all.
    Take comfort in knowing there are thousands of us who don’t even know you, that are praying for you and your family daily. Continue to be yourselves, strong and hopeful, and I believe God will grant the miracle you seek.

  19. This is the first chance that I have to catch up on Claire’s progress this week and I am so happy to read that she is doing better and better every day! I thank God for her “small” victories (which I think they are huge victories!!) and for your strength helping her recover.

    But today special prayers are for Autumn and Heidi… I can only imagine how difficult it has been for them too. So Dear Lord, please cover these 2 precious little girls with your Grace so they can find peace in their hearts…

  20. I just wanted to tell you what a great job you guys are doing!

    My boys struggled as well but they made it. God protected their hearts and I believe they have learned many good things from all of this. Still sucks though!

    Makenzie has a weighted blanket. This helped her SOOOOOO much in the sleep department. There are many different kids out there and we have tried a lot of them. We finally found one made by Affordable Weighted Blankets, that was soft, feels like a blanket not a rock, was good quality, and made with a prayer for each child while the blanket was being made! Their link is:
    http://affordableweightedblankets.com/

    Tons of Hugs and Prayers from Colorado
    Pam and Makenzie
    http://www.makenziesmiracle.org

  21. Tyler and Tiffany,

    This is actually Dodie “speaking”–I’m now at Grandpa and Grandma Simons’ in Spearfish. Don taught me to use his new computer and trusts me with it enough to leave me alone with it while he went out to do chores.

    Autumn’s desire to “have Claire back like she was before” is perfectly normal, among all the chaos, and Claire’s inability to respond to her yet. Partly it’s a desire not to be left out when Claire needs so much attention. It sounds to me like you handled it beautifully, with the grace of God. You’re such good parents!

    Many prayers, and much love, this time from South Dakota,
    Dodie

  22. Ahhh Autumn, so tough for young ones to sort out allll of it.
    It’s tough for parents to walk that fine line between honest straight-forward and age-apprepriate-how-will-she-process-it-best kinda stuff.
    I know you know, but prayers are powerful and huge sweet moments happen in the steady stream of seemingly endless hanging in there:)

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