Anne

Sick days

This has been a hard week …but a good one. Anne started to get a stuffy nose on Sunday night – which turned into a very bad cold. She’s been up alot during the night, coughing and crying because her throat hurts. Neither one of us has had much sleep. I tried to take her to school on Wednesday, but after her PT session, it was obvious that she was miserable, so she hasn’t been back. I took her to the doctor yesterday, and thankfully, she just has a cold, so we’ll wait for her body to fight it off. Meanwhile, both Kate and I have caught Anne’s cold. Fun, fun.

But, there’s always an upside to everything :-)

  • I’ve enjoyed my times in the middle of the night with Anne. She is so sleepy that she is able to totally relax while I hold and rock her. That’s a special treat for both of us.
  • When I took Anne to school on Wednesday, I was able to stay and observe her PT session. Even though Anne was miserable, I still got to see her walk with her cane. The PT helps Anne move her cane forward.  She then directs Anne to lean down on her cane and move her left, then right foot. The PT encourages Anne to take those steps by herself. Sometimes Anne can take two steps and balance well, other times she will fall backwards (and the PT will catch her).  Anne does really well when the PT holds her left hand. The improvement from the last time I saw her is amazing. She went twice as far, and she had much more fluid movements. Anne moves her legs really well; she just needs to improve her balance.
  • Lastly… Today Anne said, “I need to go tee-tee.” There was something about the way she said it that made me believe her, so I carried her to the potty, and voila – she went!!!! This hasn’t happened since the accident. She will tell me when she needs to have a bowel movement, but she’s never been able to tell when she needs to go tee-tee. So as with every new skill, it will take a while before it becomes consistent, but I’m encouraged that there might be a day when Anne doesn’t need diapers! Woo-Hoo!

Now, I need to take a nap!

Canon’s prayer

Just weeks after the accident, I had a hard conversation with Canon about Anne… “Anne’s brain has been hurt. We don’t know how that will affect Anne. There could be things about her that will be different.” Canon, in honorable big-brother fashion, took all this in, cried a bit and turned brave. All the time Anne was in the hospital, Canon prayed, “God, please help Anne talk and walk and run again.  But we know that none of these things matter compared to this: please let her remember her faith in you.” The first time he prayed this, I inwardly screamed, “NO! Those things DO matter. I want her to talk. I want her to walk.” And if I were honest, I wanted my Anne back more than I wanted her to “remember her faith” in God.

God has changed me. That’s the only explanation for what I’m about to write. Now – my greatest desire is for her to remember her faith in God… For her to know Him intimately, and to tell of His mighty works in her life. For her to know His love that is wider and higher and deeper than her wildest dreams. If from eternity past, God knew that Anne would have to pass through this tragedy and suffer physical and cognitive disability in order to win her heart for Himself – well so be it. We’ll walk this road and rejoice for the eternity we’ll spend made whole in heaven.

Canon doesn’t pray that prayer anymore… but I pray it for him. God let Anne know you…. and she will be healed, forever.

Three voices

I’m reading three books right now… This seems all too common, but it’s new ground for me. I’m not used to having three different authors competing for my attention. It just leads to lots of unorganized thoughts swirling around in my head, but I think the clearest voice right now comes from Nancy Guthrie. Her book, Hearing Jesus Speak into Your Sorrow is excellent.

She lost two infants to the same rare genetic disorder. She knows sorrow. And her questions are the same questions I’ve grappled with. Why doesn’t Jesus heal today like He did when He walked the earth? How do we reconcile His promises of protection and peace in the midst of hurricanes and terrorists (and brain injuries)? Who is responsible for my sorrow… me? Satan? God? Did God just allow the accident to happen – or did He ordain it?

These are hard questions, and she gives satisfying answers. She writes that it is our eternal home that is most important to God. My honest reaction to that reminds me of Kate whining when she has to wait ’til after dinner to get her desert. Seriously, child? Don’t you have any concept of delayed gratification? Well, I guess the apple doesn’t fall too far from… me.

Which leads me to the 2nd book I’m reading… Ann Voskamp’s One Thousand Gifts. Her book is all about how to “Live Fully Right Where You Are.” It’s a great book about how thankfulness opens the door to joy, but I’m too busy whining (like Kate) to experience very much gratitude- at least for now…

My third book is a Romanian pastor’s doctoral thesis on suffering, matyrdom and the rewards of heaven… He argues that suffering on earth advances the Kingdom of Heaven – the prime example being Jesus, Himself. If we are called to suffer and/or die for the Kingdom, it is a great Eternal victory! There’s that word again… eternal.

I’ve actually learned alot about eternal perspective from Canon. I think I’ll write about that tomorrow. Good night for now…

Pray for Anne…

May 2011’s prayer requests:

  1. That Anne would push through her fears and hypersensitivity to have the courage to retrain her body to move (walk, reach, stand, scoot, stand, twist…)
  2. For Anne to continue to come alive cognitively. She is amazing. God is so good.
  3. That Anne would continue to learn how to read, write and walk.
  4. Lastly, please thank God for being very close to Anne and giving her the comfort and peace she needs to persevere in her recovery.

God has moved mightily to answer ALL of April’s prayer requests. Anne is adjusting to her seizure med, seems less tired, has stopped stuttering and is filled with a sweet love for Jesus! She started reading; she wrote the letter “A” and she took two steps with her cane by herself! Thank you for praying!!

Hypersensitivity

I’ve noticed that Anne seems to be growing up again. In other words, she’s going through some of the same developmental stages and milestones that she did before the accident. Because of this, I’ve been bracing myself for the phase she’s entering now…

During an 18-24 month period (before the accident) when Anne was 4-5, she went through a hypersensitivity phase. One example – she refused to wear socks because they bothered her toes. That was just her toes… Her entire body and emotional being was hypersensitive. She was extrememly volatile (only at home – of course :-) During those months, we both cried way too much. I often said that Anne “kept me on my knees” because I ran out of patience with her too many times. We had lots of reconciliation opportunites…

So now I get a second chance with Anne. A few nights ago, we were outside, and the wind started blowing her hair. Most people would think, “Ah, what a nice breeze.” But not Anne. She starts screaming (in public), “I want to go inside. I WANT TO GO INSIDE. MAKE THE WIND STOP MAMA!” Oh boy. What fun ;-)

But there’s lots of upside to all of this. First, she’s growing just like she did before the accident… that’s good. Also, she’s more aware of her body. I think when she gets through this phase (and she had overcome her hypersensitivity in the months preceding the accident), she will have more strength and courage to get better. And lastly, I get a chance to love her better this time around. God is in the redemption business, and I need lots of redeeming!

So please pray:

  1. That Anne moves through this phase relatively quickly. Selfishly, I hope she is less sensitive when we go to the beach this summer. Currently, she would have zero tolerance for the sound of the ocean or the feel of the sand or the wind in her hair.
  2. As Anne becomes more aware of her body, that she would have the courage to learn how to move her body in ways that promote more independence (like walking and standing and reaching, etc.)
  3. And finally, for me to love Anne well during this phase. I’m thankful that God has given me another opportunity to parent Anne through her hypersensitivity.

I’ll end with two bits of great news! First, Anne was able to take two steps by herself using only a cane for support. She screamed in fear the whole time, but she did it! And second, she wrote the letter “A” today with her school OT! She is doing so well!!!!

Gratefully, kathryn

Bedtime Stories

I was putting Anne down for a nap the other day, and she asked, “Mama, will you please tell me a story?” Who can resist that?

Once upon a time there was a little girl who was very special in the eyes of God. “Is that me mommy?” Yes, Anne, it’s you. And that little girl could twirl and sing. She used to love singing songs to Jesus. “Was that me mommy?” Yes, Anne. That was you.

But one day, that little girl was in a horrible accident and had to go to the hospital. She almost died, but God sent angels to protect her, and He saved her from dying. She was asleep a long time, but when she woke up, she couldn’t move or speak. She couldn’t even move her eyes. “I couldn’t move anything, mommy.”

But slowly, God began to heal her. First, she started to speak, and then she could move her eyes, and then her arm and then her legs, and God is still helping her to get better… because He has good plans for her; plans to give her a – “future and a hope. He is going to give me a future and a hope. And he is helping me to get better and better – even today.”

That’s right, Anne. You are God’s workmanship, created in Christ Jesus to do good works, which He has prepared in advance for you to do.

…I love you Anne. “I love you poo-poo, Mommy.” Night-Night, silly girl. “Night-Night.”

There is so much to love about our new Anne!!

That place

As I was leaving the driveway this morning, my mind was churning and autopilot kicked in and I found myself at that place. It had been a long time since I’d been there – what used to be automatic has now turned into avoidance – except for now… I looked left – into the huge 4-lane and found it empty (thank God) – but against my will all the images come rushing back. The truck, the impact, the blood and the lifeless heap of Anne in the back seat. The still, small voice whispering amidst the urgent movement of emergency workers, “Rest, Kathryn. Rest.” And my mind comes back to the present… This place. I hate this place. Will I ever be able to accept what God’s given with submission and gratitude? Will grief always take me by surprise and leave me broken and raw? This place… The road is empty – both left and right. I turn left across the lanes. Thank you Jesus. Thank you.

Gifts

I think one of the benefits of walking through dark times is that laughter becomes much more precious. Laughter is one of life’s simple pleasures… a gift straight from God Himself. Simple pleasures are such a contrast to grief and sadness. When I experience one of these moments, I feel like my eyes become razor-sharp… absorbing every detail, so as not to miss a second of God’s gift.

Free-spirited Kate creates many of these moments for me. To watch her swing is to watch joy personified!! But I experience the same pleasure when I see Canon devouring a book or hear Anne singing (especially when I hear Anne singing…)

All of this reminds me of a book that I haven’t read… but I hear about constantly… One Thousand Gifts by Ann Voskamp.

I was just resting with Kate, turning these ideas over in my head. I came downstairs to write this post, and the doorbell rang. It was a man delivering a huge fruit basket from someone in our church… The note read, “You have been in our prayers all year-long.” I then opened my email and found a note from a friend wanting to bring a herb pot made for me by the ladies in my old bible study. She said she was including a copy of One Thousand Gifts. Maybe I should read it :)

A progress report…

Anne is continuing to make great progress toward recovery.

Since she started school in January, her attention has increased and her impulsivity has decreased dramatically. One example…

When Anne was released from the hospital, they gave us a five-point harness car seat for Anne. They taught me how to switch the seat to a booster (using the regular seat belt) when Anne’s sitting balance improved. So last fall, I tried using the regular seat belt with Anne, but she could not stop from unbuckling herself. I decided to try again this spring, and Anne is able to keep herself from unbuckling. She even asks, “Mommy, can I unbuckle?” as we are pulling into the driveway!

Another milestone for Anne is that just in the last few weeks, she no longer uses a bed railing when she sleeps. Her awareness of where she is in her bed has improved so that she is not in danger of falling out of her bed!

Anne hasn’t stuttered in over a week AND she hasn’t seemed as tired, so maybe her body is adjusting to her seizure medication (which completely controls her seizures. We haven’t seen a seizure since she started this med.)

Lastly, Anne is beginning to read!!! I wrote about this last week, so if you missed that post, click here: Testing a theory…

Thank you for your prayers!!! -kathryn

Testing a theory…

I realized during Spring Break that I might be pushing Anne too much.  Yes, her seizure medicine makes her tired, but I also think her packed schedule is a factor.  SO…  I’m keeping Anne home every Friday from both school and therapy to give her a long weekend to recover.  I’ve loved having her home this morning.

We listened to music and sang together. We even waltzed to Third Day’s, Born Again.  Anne said, “Hee Hee, this is fun!”   But since I got to spend time with her during her best time of day (right when she wakes up), I wanted to test a theory…

I believe Anne can read…  She knows all of her letters and sounds.  And she has the ability to blend sounds together.  For example, if I said to her, “Anne – what is this word…  ssss    uh   nnnnn,”   (and I put lots of space between the sounds…) she’ll answer, “sun.”  So I’ve been thinking that it might be her visual perception that’s preventing her from reading.  Anne CAN see, but sometimes she has a hard time interpreting what she sees or focusing on small details on a busy page – like letters…

So, mixing a few ideas from both her OT and SLP, I got a cookie sheet and placed three chunky magnet letters on the sheet.  Holding it vertically, so the cookie sheet was right in front of her face, I asked her to touch, and name the sound of each letter.  Then I put them in order, and Anne said, “buh…   ah…    teh  ….  bat!”  YES!!!  She went on to read: sat, mat, fat, jug, tab, bam….  well you get the idea. 

Anne's first word

Anne is so proud of herself.  As I put her down for a nap, she looked up to the butterfly painting above her bed and said, “Guess what butterfly?  I can read!”

I can read, butterfly!