brain injury

Sleepy Conversations

It’s late… 11:30pm or so, and Anne just called out for me. It’s rare that she wakes up at night, so I went straight to her room….

“Mommy, I called your name because I need your help to get comfy.”
“Okay Anne” and I bent down to kiss her head…
“Mommy, you know… you are real close to my fragile part. Be careful, Mommy”
“I won’t kiss your fragile part, Anne. I promise.”
“Do you think I need music to go back to sleep?”
“No, Anne. It’s the middle of the night. You will go right back to sleep.”
“Goodnight, Mommy.”

It always amazes me how perfectly she speaks… using full sentences, flawless grammar and precise diction. Even when she is half-asleep – the verbal part of her brain works… and it works well. It’s a good thing to go to bed grateful to God for my little girl’s brain.

It’s a good. good. night.

Aaaaahhhhhhh!

Botox, Baclofen, Physiatrist, Orthotist, Tone, Spasticity, Clonus.
I could go on, but what’s the point? Dealing with all of Anne’s doctors and wading through all of her “conditions” is just overwhelming. Advocating for your child’s well-being is stressful for me – especially when I have to navigate the impersonal systems of Atlanta’s larger and prestigious medical practices. Sigh.

When I think about it all, I feel like this:

And my nature is to procrastinate – to just not call this doctor or that doctor… But that only makes me feel like this:

Double sigh. One of the reasons I don’t like dealing with all of Anne’s doctors and “specialists” is that it’s just another reminder that I’m completely out of control. I can’t stop her seizures by myself – or reduce the spasticity in her ankles by myself. I need help. Lots of it! But what I need most of all is peace…

…do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus (Philippians 4:6-7).

Now excuse me while I go call the doctor…

Anne and music

So a typical ride in our van includes lots of music on the radio – specifically from our local Christian radio station, 104.7 The Fish. We get in the van, and one of the kids will say, “turn on the radio.” And a song will come on, and everyone starts singing – including Anne. And then almost always – right when a really good part of the song is about to play, Anne will say, “Turn it off.”

Now… her reasons for wanting the music off is different than what you would expect. After I turn off the radio, Anne will ALWAYS ask me about a specific lyric that she’s heard and what it means. “What does ‘justified’ mean Mommy?”  Ugh. Have you ever tried explaining “justification” to a six year old with a brain injury? But miraculously, Anne’s comprehension – especially for spiritual concepts – is amazing. When I finish answering her question about the lyrics, she will then say, “Okay, mommy. Turn it back on, so I can listen to what it means.”

So all of this is a backdrop for something funny that happened today. It was just Anne and me in the car. Third Day’s song, Love Song, starting playing. If you aren’t familiar with this song, it’s important to know that it’s sung from Jesus’ point of view – as if He were singing us a love song (hence, the title :-)

So in typical Anne fashion she asks me to turn off the radio. And when there is silence she asks, “Who is singing the song, Mommy? Is Jesus singing this song?” So, being really excited that she would ‘get’ that part of the song, I said, “Yes, Anne! Jesus is singing this song. ” To which Anne replied (with a mix of sincerity and amazement), “Wow! Jesus is a really good singer.”

I think Mac Powell (Third Day’s lead singer) would be flattered :-)

Sisters

I was with a gal a few days ago, and she was talking about her relationship with her sister. “It’s just easy. She can look at me and tell me that my shirt makes me look fat, and I just go change. That relationship is forever.”

I hope so. I pray for Kate and Anne. Their roles in the family are all topsy-turvy since the accident. Kate has more of a big-sister role. She’s so sweet to Anne – helping buckle her in the van, going to get Anne a pull-up, carrying Anne’s bag upstairs. And Anne hates it. It’s just so hard for her to accept help from her little sister, so sometimes Anne is mean to Kate. And Kate just looks at Anne and says, “Oh, it’s alright Anne. I love you.” At least Kate does that most of the time. Other times she cries, and sometimes she’s mean right back!

But then I see moments like today… It was just me and the girls in the van. Kate looked across at Anne and said, “Anne, I miss you. Do you know what I mean? I miss the Anne that doesn’t have a brain injury. You have a brain injury, Anne. You know that, right?” I’m holding my breath… waiting for Anne’s response. Anne reached over to grab Kate’s hand, and said, “We’re sisters Kate.” I breathed out… “Oh Jesus… thank you. And please, let it be forever.”

Neuroamazing

I was talking to Eric the other night about a thought God has given me… First a little background :-)

I’ve always been fascinated by the brain – from as early as I can remember, I wanted to grow up to be a brain scientist (that would be a neurologist, but I didn’t know that word back then!) Anyway, the hook for me was the mystery of it all. And after all the technical and scientific progress we’ve experienced since my childhood, the brain still remains a mystery to the medical community.

I know this is going to sound crazy, but… before the accident, I would climb the stairs to Anne’s darkened room, make my way to her sleeping form, kneel beside her bed and thank God for her brain. Sometimes, I would even put my forehead against hers – just to drink in what I perceived as the awesomeness of her brain. She was so complex, so deeply emotional, fiercely intuitive… Now she is simple…. so very simple.

I was crying out to God about how much I missed Anne… Why her brain, Lord? Her brain – it was beautiful; it was amazing, and now it is… even more amazing… If you look at Anne’s MRI, it is dismal. Severe, diffuse brain damage… diffuse meaning everywhere. Yet she is able to reason, laugh and spontaneously say, “I love you, Mommy.” Anne’s brain is a miracle, and a testimony to the Master Creator. It was like God was saying to me… “You can still marvel, Kathryn.” As Anne regains function, it’s like a layer of the mystery is peeled away, and I get to see a little of how He knits together His masterpiece.  Anne’s brain is neuroamazing :-)

One week and counting…

April 13th is one week away. I’m not doing very well as I approach that day… Basically, I’m going into mole-mode – where I just want to bury myself in a tunnel and pretend like the rest of the world doesn’t exist. My poor children – it’s all I can do just to keep the house running these days.

But that’s grief. It’s very familiar to me, so I’m not panicking. The laundry is in piles now, but I’ll come out of it eventually and catch up :-) And somehow (by God’s grace) I look back at the end of each day and see that dinner got fixed, the house is semi-neat and the kids have clean clothes. There’s even a little energy left for tickles and crafts – that’s all God.

April 13th represents two very different realities for me. 1st – it’s the day that God saved Anne’s life! After reading through all the medical records from that day – it’s a miracle she survived. But 2nd – that day represents the end of the “old” Anne. Brain injury patients are never the same after their injuries… Some might think that she is like her old self – just with a disabled body. No, her entire personality is different – wonderful – just different.

So, that day represents death and life to me. And right now, I just don’t want to think about any of it. You could pray for me. That would be nice :-)

A child’s grief

Anne has started showing more signs of self awareness, and she’s also asking some difficult questions…

“I’m sad that i have a brain injury, dada.”
“Mama, I’m sad that i can’t walk.”
“Daddy, why did God let me get hurt in the accident?”

And Canon has begun to process his grief….

Weeping, Canon said, “I cant imagine Anne ever getting better. I can’t imagine her ever walking. I just want things to go back to the way they were before the accident. I want to go back to that day and tell you to go a different way, mommy.”

There are no easy answers for our 6 and 8 year old children. They reflect my own questions and grief. God in his goodness has met us in our grief and uncertainty. And he will continue to walk us through this tunnel to the end.

Please pray for us as we seek wisdom and comfort.
Thank you :-) -kathryn

Struggling with Christmas

I just got home from our church’s Christmas program rehearsal. Three of us are particpating in it, so it was a busy night!

Tonight’s rehearsal crystalized some thoughts for me – as I’ve been wrestling with why I’m struggling with Christmas this year. I didn’t want to put up the tree, but I did it- for the kids’ sake. I didn’t want to deal with presents or wrapping paper. I don’t like seeing all the lights. It’s all so painful – b/c it’s all tainted with grief.

I think for the first time in my life, I find myself wanting to push past all of this christmas-y stuff – and find Jesus. I have this image in my mind of unwrapping this huge box that is covered with commercial christmas paraphernalia. And the box is really hard to unwrap and open – layers and layers and layers of paper and packing tape and packing material – to finally uncover the tiny Christ child – hiding in the bottom of the box.

Thinking of the Holy Night of Christmas requires discipline to be still – but thankfully, it is where I’ve found comfort this Christmas season…

And I’ve needed comfort… I am taking Anne to the neurologist tomorrow morning b/c we think she might be having seizures. We’ve been calling them “episodes.” She’ll zone out and jerk her body slowly. They last anywhere from 30 seconds to 2 or 3 minutes and they are SO difficult to watch. It’s just a painful reminder that my sweet little girl has a serious brain injury.

Will you pray for us tomorrow morning?

  1. that the neurologist will have wisdom to properly diagnose Anne, and
  2. that I wouldn’t get so anxious when these episodes do happen, and finally,
  3. that they would DISAPPEAR :-)

Trying to find Jesus at the bottom of the box… -kathryn

Only a week?

Has it really only been a week since we got Anne’s gait trainer?  Seriously, only a week?  Last Thursday seems like a lifetime ago – Anne has changed so much…

Anne's Rifton Pacer

She’s walking SO much better now.  She loves to walk to the piano, and then I turn her around and she walks back to the sofa.  The other night, she wanted to quit, but we encouraged her to walk as fast as she could to the sofa.  When she finished, Eric hugged her and said how proud of her he was.  Then Anne said, “I’m proud of me too.”  YES!  She put forth EFFORT!  AND had the self awareness to feel proud of herself!  We’ve been praying for that :-)

Another thing…  Anne was able to sit in my lap – without moving – just relaxing for almost five minutes.  That might not sound like a big deal – but to me, it’s HUGE.  There is something about Anne’s injury that prevents her from sitting still. While she was in the hospital, she could not relax in my lap – she would constantly want to sit up.  And she’s done the same thing at home – not being able to just sit in my lap – but always wanting to change positions.   This week, that’s changed!  I’ve so enjoyed Anne’s short bouts of stillness!  You don’t think about the gift of a relaxed child in your lap, until – well – your child can’t relax – but Anne is improving :-)

Anne’s also doing really well with her new speech therapist.   Therapists are people – with different personalities and gifts, and some have meshed well with Anne, and others – well, not so much.  This therapist is able to pull the best out of Anne.  We’re very thankful for her!

I’ve learned alot about sensory processing issues from this SLP (speech language pathologist).  Anne struggled with sensory processing before the accident, and it’s only magnified in her now.  I’m excited for Anne to start working with an OT in the area that has extensive experience with Sensory Processing Disorder.  I’ll probably write more about that later…

But for now, it’s obvious that God is working mightily in Anne!  She is emerging more and more.  Getting angry, showing excitement, demanding her way, kissing Canon, correcting Kate, and saying, “I love you Mama.”  :-) 

The joy she brings makes up for all the hard work of caring for her.  We’re very grateful in the Jackson house these days!

-kathryn

CT Scan & fluid

Anne had a CT Scan and an appointment with her neurosurgeon yesterday. (By the way… Her neurosurgeon is AWESOME!) Anne’s got a little fluid on the left side of her brain. This is common with TBI patients, and her doctors have been monitoring it closely.

Her scan from yesterday showed that the fluid had increased slightly. If it continues to increase, she will need surgery to remove the fluid. Her neurosurgeon wants to monitor her brain closely, so she’ll have another scan in a few weeks.

Can you guess what our prayer request is? Yes, please pray that the fluid will decrease, so Anne does not have to endure another surgery.

Thank you :-) -kathryn