Tuesday, July 27: Update

Today was Claire’s first day of outpatient therapy. Therapy was easy. Sitting in the waiting room was hard. We have not grown accustomed to the stares and whispers yet. We have to remind ourselves that Claire’s current condition is temporary. But Tiffany and I both have never craved attention. Even on our birthdays we don’t like parties; we are allergic to the spotlight. We are also acutely aware of Claire’s awareness and are protective about her. Being in public for the first time with her today was new and brought out aspects of our disposition that were previously foreign. It’s all so new and we haven’t had time to process or strategize for it. We’ll add it to the to-do list.

Heidi and Autumn have been taking turns working with Claire at home. A friend delivered a meal yesterday and tucked a copy of “The Little Engine That Could” with the delivery. It was a very appropriate and well-chosen book. We didn’t hesitate to read it to Claire. Heidi was nominated and gladly told the story to Claire, making sure to hold the pictures at the appropriate distance from Claire’s face.

We spent the rest of today devising new ways to work Claire’s feet into a prone position. We had looked at serial casting at OCH, but we didn’t pursue because the team thought that Claire’s Botox and phenol response didn’t require the casts. Now that we’ve gotten farther away from the injections, Claire’s feet still haven’t relaxed as much as we’d like. So today we tried lace up shoes inside her first set of splints. It worked. Even after removing the splints, Claire’s feet were more nimble and less stressed.

We got a lot of time to hold Claire today and comfort her. Tiffany still has the touch with Claire and enjoys holding her baby. Claire will hold Tiffany’s gaze for extended periods of time: it’s sweet to watch.

You will notice that the pictures I’m posting are now in color. I’ve decided that since we are now home, I will be transitioning all the images to full color. It’s a small gesture, but being under one roof again brings a little color back into our lives.

Thank you for your hopes and support.

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25 thoughts on “Tuesday, July 27: Update”

  1. My heart continues to break for your family. I look forward to your blog posts. I get them in my e-mail and read them everyday. I just wanted you to know that someone in KS continues to pray for Claire and the rest of your family. I pray that God will give you peace that passes understanding of your current challenges.

  2. It’s so good to see all the girls at home and, Tyler, good to know that you’re obviously feeling a little better than you did at yesterday’s post. What a clever idea the color was to symbolize your happier times!

    When Jesus invited us to pick up our crosses and follow Him, He knew there were those whose crosses in life were lighter than others’. Some who have accepted God’s grace of acceptance are ecstatic and tell everyone they know about feeling the love of God coursing through them…that life is wonderful through His love and that they’re so full of joy, they can hardly contain it. They seem to have no earthly problems. Yet some suffer unimaginable pain, and they’re still so very positive. All of the time.

    Still others know they don’t have those same warm feelings and then feel guilty about it. Their journey with Christ is full of sharp stones and brambles, thunderstorms and earthquakes. They follow in His steps both literally and metaphorically, plodding onward. And while they’re not always “full of joy,” they do they best they can. In fits and starts, they see the light and are encouraged.

    You know your path is hard, and although you’re aware that you’re not alone in your fears and anguish – so many other families are experiencing some of what you are – you can’t help but bemoan “what could have been.” Just keep the faith. You can never tell what the future will bring or why you were chosen to follow this particular route, but please don’t feel as though you ever have to worry about being human, with mortal doubts and anger. We’d worry about you if you weren’t.

  3. I love the color pictures! Hope and encouragement is woven in your words today! It is so good seeing the girls reading to Claire, they are such sweethearts. I continue to keep your family in my prayers!

  4. I have been keeping up with ‘Our Claire Journal’ daily. Thank you for sharing your life with us. It makes praying more specific. It was such a blessing to see sweet Heidi reading to her little sister. I know this is an especially hard time for you and Tiffany. I am praying for God to continue to give you wisdom, good health, and peace knowing that He is always in control.
    You do not know me. I am a member of The Ridge Church in Carrollton and we are a praying church. Know that I am praying whether I post comments or not.
    Harriet Dockins

  5. Greetings,

    Thank you for continuing to post Claire’s wonderful updates. Although some days seem like big leaps, while others smaller, each day is another day to rejoice and smile because Claire is home.

    The pictures are wonderful. The love of your family is amazing and something that is envy’d among many. I would love to see some pictures of “daddy and her little girl”.

    I am a devoted reader of your family posts and only wish wonderful happiness to come to all of you. God bless you!!

  6. Welcome home precious, lovely Claire! Prayers for continued courage and a hope that doesn’t make sense. Prayers for Heidi and Autumn – what great sisters! Love you guys. Thanks so, so much for being vulnerable and sharing the ins and outs. Con carino…Cory Lyons

  7. Tyler,
    I noticed the vibrant Color of todays post right away. And it goes to show how much of yourself you put into your writing, and how well I (and others) are getting to know you, that I understood your symbolism before you even explained it. It is beautiful, as is your writing, and your family. We continue to pray and think of you all often. (I’m looking forward to seeing your mom and dad this week too!). Love to you all,
    Aunt Grace

  8. A while back you made mention of the loss of/change from your “semi-charmed lives”, and while that certainly may be true, I see no loss of the magic love bears amongst you all.

  9. is it weird that i look forward to our claire posts in my inbox? is it weird that i pray for a little girl and a family i do not know?
    i don’t know the answer to that, but here are some things i do know…
    you are an awesome photographer and writer. your black and whites from the hospital were gritty and grainy and gorgeous. captured emotions and told stories without a single word.
    claire is making progress each day
    your words are cathartic and cleansing
    claire’s journey is worth telling because claire’s story is God’s story. He’s writing such a sweet story here, i can’t wait to see more of His hand…
    thanks for your willingness to be transparent. your journey with claire is and will have a lasting impact. for those who are on this unlikely path like you as well as for those who might come to a lasting relationship because of your faithfulness to share from where and from whom you get your hope and purpose.
    standing ovation from tennessee.
    press on , claire!

  10. Hello,
    You do not know me…I stumbled across your blog awhile back and have continued to to read updates ever since. I believe God has guided me towards your story as it has given me hope seeing how your family loves and holds on to faith. I have been through some hard times and am often discouraged and confused about God’s love. Thank you for sharing your story. Your family is in my thoughts and prayers.

  11. I love the picture of the girls on the floor reading, showing life coming back to normal for all of you. Though I love the color pics and the symbolism it brings, that pic would be just as beautiful in black and white. You and your whole family are “the little engine that could!” You can do it!!!

  12. I’m sure it’s wonderful having Claire home! I read your post before this one the other day and I was so sad for you and Tiffany…the emotions you’ve been given as she is now home! I remember when I brought Maddie home after 5 long weeks in the NICU (after birth). My husband was sitting in the recliner watching TV and I was laying on the couch with the bassinet in front of the couch with Maddie laying there. She wasn’t crying. She wasn’t laughing. She was just finally getting some good sleep without the monitor beeps and other babies crying and no poking and prodding her little body every hour. You would have thought I would be so happy to be in this moment, yet instead I blurted out, “I think we made a mistake!” and I had tears flowing. I did not know what to do as a mother. This was not the hand I should have been dealt, I thought. God does know what he’s doing. He has taught me so much through her. I did go through ups and downs for a very very very long time, but sharing your story with others does help. They can give you emotional support and many resources to help Claire get better quicker! It’s a learning experience for sure…but you’ll all be a stronger family because of it as long as you all stand together.

  13. wow, your family is proof of what a loving wonderful family can do and get through when times are difficult. You are all amazing…it is no wonder Claire is doing as well as she is! She has the most amazing parents and sisters who are there for her and working together. I am sad that you had to get looks from people and I know how that can feel, I am sure they were only looking though because of how beautiful your girls are! I would be looking too!! 🙂 People don’t realize how their gazes can be offending or taken the wrong way even when they don’t mean any harm. I am so happy to see the pictures in colour too! Thank you for sharing your family with us! We will always be here for you and praying for each new milestone to come in Claires time!

  14. We just checked out a copy of The Little Engine That Could since the Coppell Theater is putting on an interactive production of the story next Tuesday and Thursday mornings. Maybe you could make it to one of the shows.

    Claire and your family are continually in our prayers. We were thrilled to hear she is home and was able to surprise her sisters!

    God bless,
    Julie, Rob, Jude and Naomi

  15. i love seeing the girls in color – while i am a fan of b/w – claire and the girls are just stunning in color.

    tyler – you and tiffany are guides in public – and i am sure you impact others in amazing ways you will ever know – do not shy away from the public or telling your story.

  16. Heyyyy the color pics are beeee-you-tifulllllll Hahaaa

    Love that the girls are reading to Claire:))) We used to keep costumes on hand and act out a lot like the movie Little Women….all that interactive funnn is contagious and good medicine:))

    You mentioned that Tiffany has the touch, made me think of massage; I used to do it a lot to the kids ever since they were born, even running my nails across their back or thru their would relaxxxxxxxx the stress from them.

    You all are doing incredibly!!! Celebrate the mini-successes:))

  17. Hello, I don’t really think you will know who I am but I am part of the Ohio bunch that counted the Gaynor’s as “cousins”. I grew up going to KY with Aunt Doreen, Uncle Lae/rry, Sally (Sarah), Sandy and Edward. I received an email from the Wallace’s and have been praying (along with our and my parent’s churches) for all of you. I worked and am still working in the physical therapy profession. I work with children who were born with or have had an accident that resulted in need for interventions. I know that every day is a challange, each step forward a celebration. Being at home must be so much better. Please know that our prayers will continue for all of you as you continue down this road. Becky

  18. You have an amazing gift as a writer and I am sure you are an amazing father and husband! Your family is beautiful and I am certain that Claire will blossom at home with the amount of love, support that guides her each day. I am still so very sorry for the initial accident that turned your lives upside down! I love the picture of the sisters reading to Claire! I also have 3 girls–who are much older now–14, 13 and 11 and the sisterly bonds are wonderful! Imagine if she didn’t have those lovely big sisters to comfort her? I am thinking of your family and praying for her continued recovery! Hugs today! I know you all could use one!

  19. I am so glad to hear that sweet Claire is home! I am a pediatric home health physical therapist, and see firsthand how the transition to home can be overwhelming as well as joyful. You are doing a wonderful job advocating and getting the help that sweet Claire needs. I continue to pray for your entire family. I just wanted to let you know about a type of dynamic splint that I have been having really good success with my patients. It is worn at night, and provides a dynamic stretch that can help regain range of motion. They have pediatric ankle splints that might really help Claire. Here is their website: http://www.dynasplint.com/joints/ankle/
    You can also e-mail me with any further questions. hpitner@gmail.com

  20. I can’t tell you how happy it makes me to see these new pictures of Claire! She looks amazing! I hope I get the chance to see her in person, and if I do, don’t get upset if I stare at her! I will stare at her because she such an amazing and precious little girl who has already come so far in her recovery. Your entire family has done such excellent job taking care of Claire that I can’t find the words to express to you how much I admire your family. You guys are absolutely amazing!!

  21. a friend introduced me to claire’s blog today. I’ve read the entire thing. I wish I had heard about you guys sooner, as I live downtown, very close to OCH down there. I would have loved to catch you all on one of your walks during the day 🙂 I am now following the blog and will begin praying for claire’s recovery, and the journey you all are on with her. she is a beautiful little girl and God loves her very much. He clearly has really big plans in store for claire. the people impacted by this blog are only the beginning of it!

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