Monday, July 26: Update

I’m still evolving my understanding for how long this is going to take. I know all the platitudes and heuristics for traumatic brain injury: “Every recovery story is different;” “It’s hard to see the changes when we’re living day-to-day;” and “She needs to recover at her own pace.” While they are true, I don’t like them. I want a frame of reference. I want to see big changes every day. I want her pace to be faster. And while I may understand the commonplace truths about brain injury, I don’t like them. I miss Claire now. The truths don’t help that.

The things we think would help like getting out, keeping busy and occupying our mind don’t help either. Tiffany summed it up with, “I don’t want to keep living. I want to stop until Claire gets better.” We encourage each other when we each say things like this, but it seems like a silly dance because when she says it, I’m battling the same feelings and vice versa. We go through the motions to keep living and moving forward. But we feel lethargic and impotent, always aware of the missing pieces we loved so much. We are careful to struggle out of sight from Heidi and Autumn. They need us as much as we need them. We’ve endeavored to protect their childhood through this as much as reasonably possible; we don’t want to jeopardize the fruits of that effort by indulging our selfish emotions in front of them.

They are selfish emotions. I look back at the things I wrote and my contradictions to each brain injury truism begin with “I want….” That was the short list. But these emotions inform what our drive and determination. We want to see Claire. We want to walk with her hand-in-hand on the sidewalk. We want to kneel beside her and watch roly-polies. We want her to live her life and we want to live it with her. It’s hard to digest the fact that we’re missing out on so much.

These are our daily struggles. Our self-talk is complicated and volatile. Being home has introduced a whole new set of emotions. We knew they were coming. We still weren’t prepared. We spent the last five weeks learning how to draw meds, operate a G-tube, perform physical therapy and care for Claire. Yet we are ill-equipped to deal with our roiling emotions.

Being home presents new emotions, but it also gives us additional strength to deal with them. Claire is sleeping better and so are Autumn and Heidi. We are slowly following suit. We have to remind ourselves that it’s only been a few days since we’ve been home. Establishing a new routine is going to take a while. Maybe by the time we have, we’ll have figured out how to deal with these emotions.

Despite the roller coaster, we are thankful for the support of those around us. The comments on the blog continue to provide a safe haven to recuperate. They are invaluable to us. Thank you for your continued prayers and support.

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52 thoughts on “Monday, July 26: Update”

  1. I am so sorry you are going through all this. We pray every night for Claire and your family. We are sending hugs and prayers from CA. God bless you

  2. I hear ya…we want “more” and “faster” for you too. The unknown has to be difficult. It seems easier to manage a difficult situation if there are expectations and timelines…something to measure and check off a list. We recognize that the emotional aspect is every bit as difficult as the physical. My family is committed to praying for yours and supporting in any small way that we can. We will continue to pray for Claire but we just as agressively pray for all of your relationships – husband/wife, parent/child.

  3. And the prayers are many and often. Let yourself rest, grieve, and hope. God is with you all. He will be glorified!

    May He give you strength, grace, rest, hope, joy, and endurance! May God be your All in All.

    Praying!
    Shannon

  4. Again, thank you for being so candid. As an intercessor, this puts more “arrows” into my quiver when I go to battle for you in prayer. The sharper and more specific the arrows, the more likely it is that they will reach the proper mark. You truly are not alone; I’m glad that you have so many people surrounding you, and a Great God to envelop you, too.

  5. There is a wonderful daily devotional that I found (found me?) when my Mother was diagnosed with terminal cancer. It is titled, “Streams in the Desert” by L.B. Cowman.

    For today, July 26, the following is written.

    There are times when everything looks very dark to me – so dark that I have to wait before I have hope. Waiting with hope is very difficult, but true patience is expressed when we must even wait FOR hope. When we see no hint of success yet refuse to despair, when we see nothing but the darkness of night through our window yet keep the shutters open because stars may appear in the sky, and when we have an empty place in our heart yet will not allow it to be filled with anything less than God’s best – that is the greatest kind of patience in the universe.

    My prayers continue for your family; perseverance and peace.

  6. Sometimes reading your “self indulgent” thoughts, as you refer to them, makes me feel a lot more normal. Your strength throughout this ordeal is, well… super-normal. (Abnormal just doesn’t sound right.) 😉 But I can relate to those feelings of frustration, they are what I’m feeling for you guys. That, and awe at how you’re both rolling with it, supporting each other, day by day, trusting faithfully. Today I’ll pray for better sleep, more clarity, the Lord’s comfort and persevering hope for all of you. Sleep well, (((hugs))) to all.

  7. I was telling my husband this evening that Claire got to go home, he asked me “do you know this girl, I replied No, but Pearl Prins(which is my sister’s boyfriends mom) knows the grandparents of claire.
    I also said, how can you not pray for this beautiful girl when you see the pictures and know that the family is hurting, struggling with emotions, my heart truly goes out to you guys.
    I will continue to think and pray for you guys, and by your daily blogs I feel Im starting to know you and your family.
    May God continue to hold you up in his arms
    Christina

  8. Tiffany, just hang on–hang on to all those Bible verses you had to memorize all those years ago. I’m praying they will give you strength when you are weak and will keep you sane when you feel like you’re falling over the cliff. I’m praying for you. You hang in there. Love you, girl! Deb

  9. Yesterday in church the scripture was Luke’s pasage on the Lord’s Prayer, and I thought of you. I’m mixing several translations here. At the end of that passage, Jesus says, “Don’t bargain with God. Be direct. Ask and you shall recieve, Search, and you will find, Knock and the door will be opened to you.” Then he asks whether, “bad as you are,” parents will trick their children who ask for things by giving them things that are bad for them. That’s what made me think of what you just said. You think you are being “selfish,” but you aren’t! You and Tiffany are just being normal human beings. You miss Claire as she was, and you want her that way again. You don’t like the process of getting her back that way again. You’re tired, and tired of not knowing how long it will take. That’s not being “selfish,” and it’s not being “bad” or “evil.”

    But you are together in this very hard place, and you know the ways of prayer, and you already use them. And you have many, many people who love you and your family and who support you with their prayers.

    That’s not to say your place is easy right now. God knows, it’s very hard. God knows it’s very hard. And God is with you. Pray ceaselessly. One of the things the pastor said was that God won’t if we don’t. That’s not cruel. It’s just that we must do our part because God needs our prayers in order for God to be able to do God’s part. God does indeed know what we need and want. Somehow it’s like getting things going–it has to work both ways. So hang in there, both of you.

    I believe in you both. Your instincts with your girls, and each other, feel very right.

    Love, Dodie

    1. We can relate to everything you said as well. I think many people going through tough times feel guilty, or bad, or selfish. Thank you for your words, they’re very encouraging!

      Praying for you day and night, we love you guys!

    2. Dody! You stated all this beautifully. I agree, especially with your evaluation of Tyler and Tiffany. And I DO believe that ALL our prayers will make a way for Claire, Tyler, Tiffany and all who are involved, so I’ll KEEP on PRAYING as I know you and the other blog-followers will.

  10. Hello there.

    I just wanted to let you know that you have another un-met friend out there praying for your family through this. My friend Koralyn shared your blog on her Facebook page, and your story has gripped my heart.

    As a mother of two young daughters, I see myself responding much as you have if I were living out the same circumstances. It is a great miracle of God and of perseverance that she has come so far, but I so want to see your whole Claire back in your arms. I’m praying for just that, and will continue to rejoice with you in every bit of progress.

    God bless and strengthen you,

    Debbie

  11. I wish things would go faster or you could have a real time line! I can only imagine your frustration, but know that there are a whole lot of people pulling for all of you everyday! I will continue to hold you all in my prayers.

  12. Dear friends,
    may God give you wisdom and strength that you need. We are with you in prayers and thoughts.

  13. my son was born with a brain injury I can relate . Trauma at birth I had the same feelings you all are having. I wanted Tanner to be better before I started to feel happy. What I found was I was not able to be the best mom I could be to him because I was waiting for something. I did not even know what. Yes he was never a typical child but that didnt matter. I was a first time mom and I wanted all the same things that all parents want. A happy healthy child. Fast Forward to today. He is 13 and is surpassing all of our expectations. He is a wonderful friend,brother,cousin,grandson,and son. He has a passion for history. He loves to read,draw and drama. I had no idea what he would be able to do. None of us did. I know you want to wake up and find the Claire you remember before her accident. Let yourself be angry. I still get angry sometimes. Why does everything have to be so hard for him? But he knows nothing else. He only knows he has to try a little harder. He does with his head held high. I will leave you with this. My son’s words after a terrible experience at school,” Mom, I am a dummy God made me too!” 🙂

  14. When I was knocked into a coma for ten days and partially paralyzed (the entire left side of my body) at age 12 from a bicycle accident, it ‘only’ took about two weeks of physical therapy to get me walking and discharged from the hospital. About 6 months of physical therapy followed. But the psychological experience remains with me to this day. And of course the experience of a 12-year old is going to be entirely different than that of a 3-year old. But I want you toknow that it sounds as if Claire has a great sense of determination. This is what you can support. She will figure out how to succeed, even if some of the behaviors don’t make sense to you..just make sure she doesn’t do unsafe things. But remember, this is coming from a male who was just entering puberty when I had my experience. If I could genralize, I might hazard to say something like this: Claire has been to a place that only she knows how to leave. ll you gotta do is work with her like your doing, include her in everything like your doing, and don’t pity her. I hope this helps.

  15. My heart is very heavy for you tonight. I once gave my dad a Get Well card that said “God never meant for us to face the hard times alone, so he gave us each other.” We are all here with you, thinking of you and praying for Claire and we will be heard, I just know we will.

  16. Tyler and Tiffany,

    I know once I had each of my children, I was so happy and excited…I couldn’t wait to leave the hospital and bring them home…Once I got them home a flood of emotions came out and I felt totally incapable being mom. For example when we had Madison the next day the nurse came in and asked if she had gone potty yet. It had not even occurred to jim or myself to check her diaper.

    The reality of being a caregiver was exciting, but nerve wracking. It was very scary for me to realize I was responsible for this living, breathing human being. I could barely keep a plant alive for more than a couple weeks.

    I can only imagine that the thought of being home and getting back to normal was very inviting, but the reality is you having to adapt, cope, and create your new normal. Mourning the loss of your life before eight weeks ago is so understandable.

    Iam praying for your family constantly and appreciate these updates. I really wish we were in the same State…I wish to come along side you, and be an active part of your lives.
    gina

  17. No words of wisdom – just thinking of you guys and praying for Claire’s recovery. The hardest part for us was the uncertainty – you want a crystal ball because then you can prepare yourself for what is to come.
    We wanted to move – away from 2,3,4 year old little blonde girls – our hearts couldn’t bear to see them playing while our little one was unable to hold up her head. It’s so hard to be hopeful, and sometimes we weren’t.
    I’m praying for a day when you, Tiffany and the girls reminisce about how difficult things were when Claire needed so much extra help/equipment/therapy – and compare it to her amazing gains.
    Good for you for researching and bringing your team onboard with an approach that you believe in – so great!

  18. I wondered why I didn’t hear from you about visiting you on Sunday – now I know – you weren’t at the hospital any longer!
    Great news that your family is at home together again and that Claire seems to be so glad too. I want to point you toward the message presented at Irving Bible Church this past Sunday on the power of prayer – you can listen to it on the podcast at Irvingbible.org. I think you’ll be encouraged by it – I hope you find time to listen to it. Meanwhile, I am encouraged to continue to pray for you, and Claire. Blessings on your week, Lynne

  19. We here in South Dakota continue our prayers on a daily basis for all of you. I pray that finally being home will allow some measure of normalcy (whatever that may be!) To begin to emerge. I pray for continued good sleep for all of you and that being home will boost Claire’s recovery to higher levels! God is our provider and healer and I believe that you will once again walk hand in hand with Claire, discovering all life has to offer!
    Susan

  20. Hang in there! I’m praying that each day will present something new and exciting in Claire’s recovery. You are such a beautiful family and your love for each other and your girls is so apparent and such a special treasure.

  21. I know this next step is so terribly hard for your family. You are such wonderful parents–please know that you are in my daily thoughts and prayers.

  22. Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Matthew 11:28

    Your speak so eloquently about your emotions and are so open and honest! I am so happy you and Tiffany have each other to lean on when the other gets down. As Jesus is with you during those times so are we. Being home is giving your mind new space to wander and think about the yesterdays before the accident.

    I pray that God will close those areas of your mind so you can both rest and delight where you are today! Please God lay your hands on their minds so they can rest.

    Hugs to your family!

  23. This remindes me of the poster that says “Lord, grant me patience, and I want it now!”. I struggle with patience, and I think part of being a parent is learning a great deal about patience. I will pray specifically that God would give you the patience you need for each day, and also His perfect peace.

  24. Rarely have I seen anyone articulate emotions so well. Were I in the same circumstance, I would have simply written, “Tonight hurts”, and be done with it. But you were able to put into words exquisite layers of feelings and the results are so moving.

    I get to see our 3 year-old granddaughter nearly every day. From the time Claire was hurt, I have hugged Macie with a different mindset…knowing how precious she is and how blessed we are to have her perfectly healthy.

    Prayers continue.

  25. Tyler, thank you for your kindness yesterday. Your demeanor did not betray what you must have been really feeling inside. You seemed accepting and somewhat peaceful about what Claire and your family is going through, but I am also comforted knowing that you are journaling your struggles. Your candor is what will help people rally around you for the support you need in order to carry you and your family through this. Tiffany, my heart goes out to you as a mother who loves her babies… to want life to stop until Claire gets well is so understandable. Our love for our children seem to define what glows in our hearts, and your heart is broken. I meant what I said… Claire is incredibly beautiful. Your family have been in my thoughts every single day, and my heart is with you.

    When you are ready, I would love to read to Claire. I am available any time during the week – my work is just 5 minutes from you and I can break away for an hour to share stories with her. You may email me at rollin.skowronski@gmail.com.

  26. Kitty keeps me abreast each day of Claire’s progress. I have been following your tragic ordeal since the beginning, though this is my first comment. I just needed you to know that many prayers are being said for Claire. Sometimes, I have learned, you just have to take things “an hour at a time” instead of the “day at a time.” It can help a bit. Well, I just wanted to let you know that though I am a complete stranger to you, prayers are being flown on a wing from Maine. God bless you all!

  27. My heart is breaking for you. I read your journal posts and cry with you. As I continue to lift Claire up in prayer I also pray for you. I pray that you will receive comfort and strength every day to help you bear the load you’ve been asked to carry. You are not alone.

  28. You do not know me but I have followed your journey through this traumatic time…a friend of mine goes to church with you. I have prayed, cried, prayed and prayed some more for you all. I can’t even imagine the pain of watching your sweet Claire daily and wanting her to return to herself quickly. Have patience and trust! God is with you and he will get you through this. Please know strangers are praying and lifting you all up!! God Bless You!!

  29. Thank you for sharing your thoughts and emotions so openly and so eloquently. Even though I have never met you, my heart and my prayers go out to you and your family.

    Dean Halverson (Colorado Springs)

  30. Please be sure to contact your local school district for Early Childhood Assessment (for children ages 3-5). They have programs that Claire and your family will be eligible for. Praying for you and your family here in Bryan, TX

  31. I am not sure words say enough. I am super glad that you and your wife can talk out what you feel. I know that is painful but important. Beyond that, I cry for you and your family but I find peace in prayer knowing that God really cares about all of you. I pray that you feel a hug from Him as He holds you close during these tough times.

  32. Tyler & Tiffany,

    Your emotions are totally understandable. We can want to be patient and know we should be patient but we also want to know how the story ends always praying its a happy one. Unfortunately, this is one that cannot be fast forwarded and the end result is in many ways out of our hands.

    Remember you are doing the best you can every day and some days are better than others. If you look back at your first posts you were looking for Claire to live and get off the ventilator, how far the story has already come!!! You desparately wanted her to come home and she is. So even though every day seems to be slow and without significant progress your family has made huge strides in just a few weeks. Those weeks have been extremely difficult but you keep moving forward and that’s what counts. Your family is amazing!!!

    My thoughts and prayers continue for Claire, Autumn, Heidi and of course you and Tiffany.

    Nancy

  33. Tyler, a tiny bit of your frustration may have to do with your utter and complete helplessness. I say a “tiny” bit because so much of your despair has found an outlet in your day-to-day routine of helping Claire get better. Your pain has turned into medicine, and you can see progress from what you’ve done.

    But then…what’s next? Where do you go from here? At what point do you know for sure that Claire will return to as normal a state as possible?

    Since no one can answer questions like that, maybe a shift in outlook can help. To that end, I’d like to share a couple of stories with you involving just that.

    In the first incident, the son of a very close friend of mine committed suicide when he was 21. Many of us encouraged her to get involved with support and suicide prevention groups, but she would have none of that. From the depths of her grief, she once lashed out: “I won’t make a career out of my son’s death!” But because she’s a down-to-earth person with a terrific sense of humor, she’s survived well and continued to be a loving mother to her surviving daughter.

    Another wonderful childhood friend, who had moved away from Dallas, lost her 9-year-old son when a drunk driver ran him down in a school zone crossing. Still grieving and with two other children at home, she organized friends and began to lobby the city and school board and joined MADD. Some of her personal efforts changed school crossing zones in her city, and she felt encouraged that other kids might escape her son’s fate. That was a few decades ago, and to date, there hasn’t been another school crossing death; plus, drunk drivers are more severely punished in her state than in others.

    I also had a friend whose daughter was born with cerebral palsy, and that adorable child literally became a poster child for fundraising efforts. Through intensive therapy encouraged by her parents, she eventually learned to live a productive and happy life. Especially heartwarming is that she was able to live alone independently, albeit in a wheelchair.

    What I’m saying is that you have an opportunity right now to get into action, praising God that Claire is still ALIVE. What a wonderful word. And her quality of life will be good because she obviously shows signs now that it will.

    Perhaps you and Tiffany can find something unique to do that will help not only you but other fellow sufferers as well. You’ve already been introduced to blogs of other parents with brain-injured children, you’ve read or perused books by still others, and you’re aware of support groups in your area; you’ve even seen pictures of and read about Jill’s House in Indiana, maybe even Camp CAMP near San Antonio. Some states even have summer camps for sibligns of children with disabilities. And what about school programs in Irving for special-needs children? Will the IISD be prepared when Claire’s school age? You may already have seen other children at OCH with similar problems, although you’ve never mentioned it.

    Maybe devising a plan for something you can throw yourself into with gusto, with a time frame and a specific goal, will serve a great purpose for you and Tiffany and the girls – along with your incredible extended family who’s been there for you from the very beginning. Already, your daily blogs are doing so much good for everyone concerned! Like another poster said recently, I’d like to see a book come of this. You need us, and we need you as well.

    Anyway, it’s just an idea. Hugs to all.

  34. You know Tyler, as I pray for you and your family . Both Gerry and I feel strongly that all will fall into place for you someday. We have peace about that. I know that it might not be in our time frame, it will be in God’s timing,YOU will get there!! We all get so impatient with trials that are presented to us. We might even wonder when will things be normal again/ the same again? It might not be same as it was before. But I know that it will be GOOD. That God’s timing is perfect. That His will for you is perfect. And that He has a plan for you, for Tiffany, for Autumn, for Heidi and for Claire. We believe that you have a great testimony to share with God’s people and that He will use you and your family mightly. I understand that everyday must be so difficult for you all but PLEASE hold on cuz your blessings are coming…..So we pray that you feel His presence today upon your life and that you will have peace in your heart as you continue to fight for Claire. May our heavenly father’s LOVE raining on you today!!!!
    Keep Seeking Him!!
    Keep TRUSTING HIM!!
    Keep Believing His word!!
    He is real and He is with you!!!

  35. Tyler & Tiffany,
    I am presently in a Bible study and our priest challenged us to pray for persons of our choosing and pray for them every day for a month and then see what God has done in their lives. You and your family are on my teams list. Although I have been praying daily for you, I am excited to see what this brings. Tiffany I hope I see you at IBC for Bible study on Tuesdays this fall. I would be thrilled to see Claire and care for her in my class.

    Yours in Christ,

    Chrissy Giuriceo

  36. I pray for you all every time I read a post. I am excited you got to bring Claire home, but can’t imagine all the new fears and emotions that brings.
    You’re a great writer, Tyler and I pray blessings upon you and your girls.
    Melissa (McKenzie)

  37. I can only imagine the roller coaster ride you are on emotionally. I find comfort in picturing God sitting right in front of you on the roller coaster. Hold on tight! You cannot imagine how much you are loved, Carol

  38. I just wanted to say that your post today reminds me of David’s psalms. He poured out his heart to the Lord and made his emotional outbursts and even questioned the Lord, but He always ended with recognition of God’s Sovereignty and gave Him praise for all things.

    This will be how you and Tiffany and the girls survive. Only by Grace.

    We will not quit praying for you.

  39. Even though I don’t know y’all personally, I feel your pain. This was a tragic accident and Claire has come so far in the recovery process. Celebrate the little victories, no matter how trivial they may be. You and your family have to be so strong to get through this. God gave you Claire for a reason. He knew you and Tiffany were the ones who could take care of her and push her toward recovery. You mentioned that you miss Claire. While she is different now, she is still there. She is a new Claire and hopefully soon she will impress you in ways you could never imagine. Stay Strong. Things will get better! Sending positive thoughts your way!

  40. As I read, u reminded me of my best friend Debbie who adopted her first newborn Marie n after she soaked up all her adorable personality, Autism took some of it away.

    Meanwhile she adopted a second newborn from a different family, soaked up all her adorable personality, then Autism took some of it away.

    Debbie adopted a third newborn from a Samoan family, soaked up all his adorable personality, then Autism took most of it away.

    As phenomenal as Debbie’s attitude is, that kind of loss is complex and sad in the missing of things, many many times when she least expects it.

    Both Debbie and Art are warm and funny Christians but as time went on, more and more load was put on Debbie; Art finds it too hard. Similar for Debbie’s friend Chrystal who also had one Autistic child; Chrystal died of cancer recently and it hit Debbie hard.

    Thank God that Debbie has a great support system within both her church and Autism group. Take allllll the help you can get:))

    Prayers up!

  41. Tyler and family,

    I’ve never gone through anything like your family is experiencing. Nothing even close. And I was wondering this morning why that is. Then I remembered someone saying that God will not give you more than you can bear. You have held up with love, dignity and a sense of grace in the most trying situation I can think of. I have no doubt that I would not exhibit the same behavior under the same circumstances.

    There are a lot of people out here thinking about you all and keeping you in prayers. She’s getting better so make sure you take the time to get better yourselves and be ready for the next chapter in the lives of your family, whatever the next chapter brings.

    With love and prayers,
    Tony

  42. I so want to do more to help but I know there is nothing I can do other than to keep all of you close to my heart and in my thoughts and prayers.

  43. Thank you so much for your honesty, Tyler. We all love to read updates filled with progress and hope, but you are right to share the plunges, too. Grief comes in waves, and sometimes it feels like they’ll sweep you right off your feet. Your willingness to share your lows allows us to pray with understanding.

    God’s mercies are new every morning, but in a real sense, so is your loss. You wake up to it every day, and you have no choice right now but to live in the tension of this reality: God is a loving, sovereign God, and your hearts are broken. No one expects you not to hurt, even as we all pray you’ll have supernatural peace.

    One day at a time. Rant when you have to. God understands, and so do we.

    Much love,
    Jeanne

  44. After reading your latest post, I have to say that you are feeling and saying (but are much more articulate) exactly the same thing that many, many (too many) parents that have walked the same path as you. My husband and I are two of many. You are right, each child and each injury is different. The pace at which recovery and progression can take is one that can try the patience of those like Mother Theresa. Stay strong in your faith, lean on each other when needed, take the time to cry and let it out, then get back up and see and relish the blessings and miracles that God will show you in every day.

    You have my prayers and understanding. God Bless Claire and your family.

  45. Glenn and I pray for you both and Claire all the time. Our hearts go out to you in your struggle. When I have gone through tough times, I start praying the Psalms not only for myself but for those around me. So I pray that God will “come quickly to help you.” Psalms 22:19

  46. Children of Cousins – I read your posts daily and was moved to repond tonight. Your Dad’s cousin, Joe (my hubby) and I are trained as Stephen Ministers through our church. Simply put, we are caring, Christian cargivers to those in a life crisis. One thing we have learned is that whatever emotions you are having, they are real, true, and yours, so please work through and acknowledge and talk about them – without judging yourself for having them. All the emotions you have expressed seem perfectly expected from someone with your current crisis.
    And it is OK to show them to your children. They are in much pain, confusion and experiencing tremendous loss, too, and to see you also in that place is healthy for them – especially as they see you work through them and still function as Dad and Mom.

    Know that we pray for you daily and hope you are getting some emotional support through your church or a professional. You two have so much maturity beyond your years and we are blessed and inspired by your words, but you, too, need someone to just listen. We hope we meet at some family reunion sometime.

    Eddie’s cousin Joe & Patricia
    Newcastle, CA

  47. Keep venting [ nicely ] to each other, or God. It helps.
    [ I say this from experience ]
    Care to the caregivers; Prayers to all of you.
    Hugs, love
    Susan D.

  48. My family has been keeping up with your sweet Claire and your family through your blog. We go to IBC. My girls (Hannah -5 & Faith – 3) lead our family in praying for y’all.

    I just want to thank you for the updates. I know it is hard to see the day-to-day progress, being in the middle of it all. We have been so encouraged as we see the progress through your blogs. From this side of the cyberland, you are all doing an amazing job supporting and encouraging one another, and Claire is doing an amazing job recovering (with the help of her wonderful family). Your girls are also so strong and sweet with her.

    With love, in Christ,
    Ivy family

  49. I think sometimes that frustration is harder to deal with than pain. I think of Paul in dealing with Macedonia…..we can be right where we are supposed to be and still face challenges and trouble…the ability to choose joy amidst suffering is the miracle of being a believer in Christ. ( noting that “happiness” is not necessarily synonymous with “joy”)

    I continue to pray for your physical endurance but also that God would continue to give you a glimpse of how He can be glorified ( Claire is only a vehicle of this) We never know how God chooses us and sets us apart to do things in a way that nobody else can….Claire included.

    I know it is early in the process and ya’ll are still finding places for all the emotions and information but what a gift your faith and hope can be to other families with children in a similar position. With God, nothing is wasted!!!!

    Loving you and praying favor on your family,
    Jennie

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