Today has been emotionally challenging. My mind has been regressing to the things we did with Claire before last Sunday. Needless to say the emotion expended today has been tiring.
The catalyst was this morning’s visit with Claire. She was having a tough morning as the sedative was wearing off. We’ve been warned about some of the things that denote neurological destruction, and Claire was showing some of them. When the brain is injured, there can be miscommunication between it and some motor functions. This manifests itself as ‘posturing’: her limbs will tense and turn in toward her body. When she is agitated, she exhibits some posturing. While she was having her lungs suctioned this morning, she started posturing. But as the late Billy Mays would say “That’s not all.” During the suction Claire reached her left hand up to her throat for the tube. The nurse jokingly said, “I’m going to have to put those restraints back on.” It was encouraging.
I also spoke to the doctor and asked about the posturing. In short the verdict is still out because posturing could just be symptomatic of her functions coming back on, not necessarily an indication of how things will always be. We’ll wait and see.
This time was punctuated with some acute memories and many tears. It felt good to cry.
The tears continued at my next visit. She made eye contact with me. Her eyes weren’t listless as I has seen them before. Her heart rate was at 160 bpm, and I was talking to her. As I looked into her eyes and smiled, her pupils closed down and fixated on my eyes. Her breathing was very high, and as I spoke to her, both her heartrate and breathing started to moderate. As I stroked her forehead, her eyelids slowly dropped, and she went back to sleep.
I held my emotions at bay until we left the PICU where I expressed my relief with more tears. It wasn’t much. It was enough for today.
37 thoughts on “Saturday, June 5: Update 1”
Praying for God to comfort you in all you are going through. May you feel him walking with you all through this valley….holding you when you need it and loving you as ONLY HE CAN!
I read your posts everyday and it brings tears to my eyes. Though we dont know each other, I pray everyday for your
beautiful daughter and for your whole family. God bless you
and your Princess Claire.
PRAISE GOD!!!! Continued prayers for her..and the family..
I stayed up way too late last night reading/searching the internet for information on everything you are going through…Like I said the OCD in me won’t let me think about anything else. I have also talked with Jim’s sister who is a Doctor, and she was sharing with me some encouraging insights…however I know every case is unique and it’s a matter of waiting. I am sad for you and hope you recieve a super natural peace over this waiting period.
I ,too, have OCD – Obessively-Observing Claire’s Days! Maybe that’s OOCD! 😉
I believe I have this particular syndrome tooo… I keep going over these and reading them … praying as I go along!! Searching for answers and praying some more….. it is definitely OOCD
I am still praying and feeling frustrated because I can’t give y’all a hug. You are all a part of our family now. The Lord works in mysterious ways! Love from ours to yours! pat
There are so many people praying for Claire. I know we’ve never met before but that doesn’t matter with people who know God. Our spirits are connected. I will continue to lift up Claire in prayer daily. You are not alone!
Andy and I continue to cry together every time we read your updates… getting a surface glimpse into what you both are going through and feeling. Our hearts ache for you… at the same time, we must remember… “With people it is impossible, but not with God; for all things are possible with God.” (Mark 10:27) We are continuing to pray for sweet Claire and a full recovery – God can make that happen!!!
i too, am a stranger, who has found your blog via a friend in dallas.
at the risk of saying anything insensitive or clod-like, i’ll just stick to the basics, letting you know that a mother of two in tennessee is praying for your sweet claire, and will continue to intercede for her (and for you). may God grant you peace and comfort and physical and emotional rest as you wait…
praying and longing for the desires of your heart…
Tiffany and Tyler:
Tiffany, we were in MOPS together this past year (we sat at the same table – you may not remember me for I wasn’t there a lot). I wanted to let you two know that my husband and I, and several of our friends and relatives are praying for you. I think of sweet Claire many times duing the day and I pray for her. I am praying for your strength, too. Your posts touch us so, so deeply. Thank you for letting us in and allowing us to pray for you.
Tiffany & Tyler,
As has been stated many times already in this blog, you do not know me and we have never met, but heard about your angel, Claire, through a friend’s FB posting. That in of itself is a testament of an angel in your midst… just look at how many people have been touched/connected by Claire and your family. Please know that you have an entire circle of family and friends also sending up their prayers for Claire. My 4 year old, ask every day how Claire is and makes sure she says a special prayer for her at bedtime.
God bless and stay strong. Keep fighting Claire, keep fighting!!!
I have only read a few of your entries but wanted you to know you are not alone in this long journey ahead of you. On Feb 28th, 2010 my little 7 yr old boy, Alex Nelson was burned while roasting a marshmallow at our home in the mountains in WV. He was burned 65% of his body, almost all 3rd degree burns. My husband and I and our son Tyler and the rest of our family have been living what seems like a nightmare and a blessing all at the same time. We thank God for sparing his life and continuing to heal him but yet live with the accident and long road to recovery every minute of every day. I share your pain. I know how it is to walk into a restaurant or store and just the smallest act of kindness will bring you to your knees and in tears. The first week of March we were told Alex would lose both ears, be blind in one eye and limited site in the other, he got infections, had pnemonia in both lungs, skin grafts that did not take, you name it and it happened to him. God is very powerful and only the strongest of children are chosen to face what has happened to them. No one knows why as you know. We all have a lot of questions but only God knows the answers. We were to the point from the very minute Alex was put on a ventilator which was soon after it happened to just surrender him to God and let it be his will. Every day there is a new challenge, a new day faced with every uncertaintity and a few rays of hope and light that seem to shine through. God will show you the way. Let him guide you. If you ever want to talk or ever find time to email, my address is email@example.com. We will pray for your daughter. I know God will heal your child.
I am a friend of Barbara Salerno from Facebook. There are about 12 or so people praying for Claire’s full recovery, for your peace, strength, encouragement, and the Holy Spirit presence for your family, and a positive outcome. This has been an amazing display of the love of Jesus, the body-His church, and everyone coming together to lift all of you up. Thank you for sharing and with are with you on our knees and in our hearts.
As many have stated, you don’t know me but we heard about the need to pray through a friend you knows your friend… Hard to look at our own kids without thinking of Claire! Tonight when I got your update, I was praying and felt strongly, “‘Not by might, not by power, but by my Spirit’ says the Lord.” Not the verse I would have expected to hear, but I believe it is true for Claire and you all. Thank you for the updates!
I love your family and I ache and cry with you as I read your posts. After 3 1/2 years the pain still burns fresh. But what hurts more is knowing that such a beautiful family is fighting through. You have so much love and support.
I am so happy to hear you guys left for a while. I had a white knuckle grip and didn’t EVER want to leave. But when I did it was nice to get air. We went to Walmart because we forgot about Christmas and had to do something for Santana’s big brother. The cashier was so moody and I couldn’t help but wonder what her issue was. Till this day when I walk through stores, I look at people and wonder what kind of pain they are hiding. Who would have thought that a then 26 year old was going through what I was going through. Makes you appreciate life and people around you.
I pray for your strength everyday. I pray for claire and her healing too… But I have REALLY been focusing on you guys as husband and wife. Please love each other, point no blame, and TALK! Do not hide your feelings in. Make sure you cry in front of each other. We made the mistake of being the strong ones in front of each other. In the end we are ok… but it made tension high.
Thank you for your updates.
Tyler, Tiffany, Autumn, Heidi, and Claire,
I’m SO glad you two got out of that hospital yesterday. Don’t be ashamed of the tears–they allowed strangers to show you love in your distress.
And I too sing praises for pee and gas! All those little signs show how hard Claire’s working to be herself, and whole. Surely reaching for that vent means the same. And who knows about the “posturing?”
These scriptures keep going through my head—may they help a tiny bit.
For all of you, but especially Claire, from Isaiah 43:4-5—“You are precious in my sight, and honored, and I love you….Do not fear, for I am with you.”
Pieces of Romans 8, perhaps my very favorite scripture, because it tells me God is with us no matter what.
“If God is for us, who can be against us? . . . .Who will separate us from the love of Christ? Will hardship, or distress, or persecution, or famine, or nakedness, or peril, or sword? . . . . No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death, nor life, nor angels, nor rulers, nor things present, nor things to come, nor powers, nor height, nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.”
You’re a very mature young couple who’ve had to do a lot more growing up way too fast, because of what’s happening to Claire. That’s painful too. But I’m proud of how you are both handling it.
How are Autumn and Heidi doing? And your parents and Tiffany’s parents? How wonderful they are there to take care of your other precious daughters!
The blog is such a help to many who know you, and who don’t, to share your pain, to encourage you, to be in constant prayer with you, and to spread the prayers around the world. I hope it helps you, too, Tyler, to write, by taking the pressure off just a little. And it sounds like it helps both you and Tiffany, just a little, to read what everyone writes. Thank you.
I know of people who have used caringbridge to create a website about their child, health issues, and connecting family and friends through prayer and support. You might want to check it out at http://www.caringbridge.org if it may help. From their about section: About CaringBridge
CaringBridge is a 501(c)(3) nonprofit providing free websites that connect family and friends during a serious health event, care and recovery.
A CaringBridge website is personal, private and available 24/7. It helps ease the burden of keeping family and friends informed. The websites are easy to create and use. Authors add health updates and photos to share their story while visitors leave messages of love and support in the guestbook.
Miracles come in many ways shapes and sizes. I thank the Lord for His great love for Claire and all of us other little sheep…
May God give you want you need to ride out this storm!!! Your storm is rough right now however, keep reminding yourself that God is in the boat with you and He will calm the storm in HIS perfect timing. Jeremiah 29:11-13.
Your updates are amazing!!!
Blessings from the shore!!!!
Prayers, Prayers, Prayers that’s all I can add to the others comments. I send you prayers often throughout the day.
May you have peace in the midst of this trial. May God protect and guide you in all your decisions, also for wisdom for all the nurses, doctors etc.
I pray for strength, energy, and sleep for all of you.
Tyler and Tiffany,
I was in the same MOPS group as Tiffany, but we really never got to know one another since were weren’t at the same table. I just remember going to my first meeting and Tiffany (who had never seen me before in her life) gave me a big smile and engaged in some small talk with me. It really comforted me and calmed my nerves about joining a new group of moms. I received notice of Claire’s situation on Sunday evening and have been praying, crying, and reading about your daily experiences ever since.
I have forwarded your blog to all of my friends, family, and prayer groups. You have God’s soldiers praying for you that you will never meet. What a testament to His love and dedication!
Thank you for opening up your heart to virtual strangers, so we may, in however slight a way, walk along your path with you.
All my best!
In our Savior’s name,
Fellow MOPS Mommy
We don’t know each other either, but I have been praying for you and your whole family constantly. I live in California and have passed this prayer request on to hundreds of people. I come from a tradition of praying to the blessed Mary to take care of children, and I think she must be hearing these prayers so loudly:
Dear Mary, please heal your angel Claire. As a mother, you must not be able to bear the suffering of a small child, as my own heart cannot. Fill her heart and soul with grace, the Holy Spirit, laughter and love. Although the road may be long, grant Claire’s family the patience, strength and courage to endure it.
Much love to you all.
Hi, I grew up with Sarah Kemper and found out about this awful accident from her. I wanted to tell you how sorry I am that this has happened and that I have been praying for you. I am always on the edge of my seat waiting for an update. My husband is a police officer and was a k-9 officer until his dog that was still in training bit my, then 3 year old, daughters head. I was the one that was in the yard with her as he was getting ready to go to work with his dog so I saw it happen. The look in her eyes as it was happening and my helpless feeling will haunt me forever. The ambulance took us to Medical City Children’s and they were awesome. We spent 4 days in the PICU, she had a plastic surgeon stitch a huge part of her scalp back together, her ear canal was ruptured, the back of her ear was sliced open and her skull was fractured. She ended up having to have surgery to remove the fractured portion of her skull that was just floating around. It was the hardest thing I have ever been through. Of course that is minor compared to what you are going through but I’ve had some similar feelings as you. She will be 6 in August and is just fine. She has a huge scar on her head but it’s all along her hair line so nothing real visible. I have to also tell you that I lost twin boys in November at 6 months pregnant so I’ve also buried two children. It too was the hardest thing I’ve ever done. In the beginning I wouldn’t wish my pain on my worst enemy but now I wish every parent could have that feeling for just 5 minutes so they know just how important children really are (as I know you already know how important they are). I PRAY you will never know how it feels to bury a child. I pray God works miracles with little Claire. I pray that you have strength and faith. I pray that you too can tell your story to a family when Claire is 6 and can say “she is just fine”. God is good and works in His time. Please know you have many friends and strangers praying for your family. We will not give up on Claire and neither will God.
God bless you!
hugs and tears from a stranger who can’t stop thinking about your family…
Tyler & Tiffany – Despite my desire to write a book of encouragement and comfort to you two, I haven’t been able to find any words. When I went out to dinner with Alex and Laura last night, I didn’t even know what to pray except, “Help.” I remember when I was in high school coming over to your folks house one night, and Autumn had done something that she needed to be disciplined for, and I remember thinking that I wanted to have a family like yours as I watched your bold leadership and loving submission as a husband and wife – and intentional and caring discipline as father and mother. Know that the hundreds of people you have praying for you right now aren’t doing so just because you are facing tragedy, but because you have touched all of our lives in some way (even if you didn’t realize it) and we love you for it. My heart aches with you and you have my tearful prayers. Thank you for keeping us updated.
I keep praying every day for beautiful daughter. I check in also to see the updates. I also pray for you to keep strong through this incredibly difficult time. God Bless.
I am not sure what to say to you two…we are family (in a way) as I am married to Joe Irvin, Ed Powers cousin. We know and love Ed and Sarah, and think we met you Tiffany along the way. We have been praying for all of you since day #1, and I find myself in tears each time I read your updates. I wanted you know that while gardening today I had Claire and all of you on my mind (I guess I suffer from OOCD, too) but felt I could see the holy spirit right there in Claire’s room. I can only picture it by the photos you have shared. It was such a tangible feeling that I cannot even describe it. May sound silly but it’s true. It gave me some peace and made me smile.
I am also in awe about the use of blogs to reach folks far and near. E-connections go far deeper than I could have ever imagined and God has had a hand in this one – most definitely. Joe and I want you to know how touched we have been by your words and the use of those words to evoke deep emotions in our souls. You both are truly gifted, loving people and seeing the way you have handled this tragedy gives us much faith in the generations behind us! 🙂 e-hugs to you all.
I so glad that you were able to cry. It’s necessary, healing, cleansing, but yes, exhausting, too. I don’t know how you can look in her eyes and not cry every time. I’m pretty sure I would be no good. But I also know that God gives you a strength that you don’t know you have during times like these. It comes from deep within. I am so sorry that your day was so emotionally exhausting and with not much obvious progress. I am continuing to pray for all of you!
Theo was happy to read about her eye response. She is young and in good health which also is great. We pray for you both and for her. May the lord give you strength and courage each hour of each day. Love and prayers.
David has only been working with Tim for a short time, but we have been following the progress of Claire. We truly have kept your whole family in our prayers. We are praying for blessings, and strenght for each one of you. May God provide rest, and touch the hands of all caregivers to Claire.
David and Laura Haynes
Hang in there Dad, you’re doing an amazing job!! Clinging to Jesus’ hand for your Claire.
I too do not know you or your family. This was posted on a friends FaceBook page. I am praying that you will be granted the gift you are so desperately seeking, your Little Girl to be healthy. This Blog has reached many states, and I believe you have thousands praying for your little girl, and your family. May God hear our requests.
I am your upstairs neighbor Malisa’s sister. I have seen your beautiful girls many times. Our family has Claire and your family in our prayers. It is truly heartwarming to see the support you are receiving — I know this must give you much strength.
We have been following your posts since a friend of Megan’s posted the prayer request on facebook. Our hearts ache for you and your family as you go through this storm. While we don’t know you, we are sharing with you in the pain, as well as the small victories, of this precious little girl. While the mountains seem high and difficult to overcome, know that they can only bring you closer to God!! We are praying for you and your darling Claire.
Josh and Megan Webb
I am in the twins group with your Aunt Grace. We had a moment of prayer and silence Thursday Night for all of you. Our thoughts and prayers are with you.
Love, The Nixons.
My name is Shirley Raymond. Another person whom you do not know. However, I too, went through a “fight for my daughters life”. I sat at her bedside, much like you, only 2 years ago. I understand what you are going through. I would like to say MIRACLES DO HAPPEN. My daughter is a MIRACLE. YOUR DAUGHTER CAN BE TOO. DO NOT give up, keep the power of prayer. Sites like this do help. Prayers and positive thoughts help. Friends and family are important. My thoughts and prayers are with you today and will continue throughout your daughters recovery. I went through a different experience and my daughter was much older, but a child is a child and a life is a life. May you experience the Miracle that was granted in my life. May your daughter’s angel protect her and guide her.
I FEEL SO MUCH FOR YOU AND YOUR FAMILY.