What God has prepared…

Today, as Kate and I picked up Anne from school, Kate listened to Anne’s teacher give a good report on Anne’s day. Kate said,
Great job, Anne!!! …even with your brain injury!” Kate was sincerely proud of Anne – but Anne responded as she always does – truthfully with no filters…

I hate that brain injury… That stupid brain injury. I just want it to go away!
-Anne

Anne has not lost her sass! Her spunk made me laugh :) I feel the same way as Anne. And you know what… I think God agrees and can’t wait for us to see Anne made whole in heaven!

“What no eye has seen, nor ear heard,
nor the heart of man imagined,
what God has prepared for those who love him” (1 Corinthians 2:9).

Continued healing!

Anne is doing something amazing! She is starting to crawl.

I sound like a first-time mom talking about her 7 month old :-)

Seriously, last summer, when Anne was in Therasuit therapy, one of the exercises they did with Anne was to get her on all fours on the treadmill and physically move her hands and knees in a crawling position. Not only could she TOTALLY NOT do that movement on her own, but she screamed the entire time, seriously, she screamed.

Now, she can transition from side sit up to all fours (or I should say three’s – because her left arm cannot straighten all the way to the floor) and she can move her knees… right, left and then she falls. But she’s doing it!

I’m continually amazed at the complexity of the brain and how just how much damage Anne sustained. A healthy brain controls the muscles necessary for crawling without the person even “thinking” about it. It’s taken Anne over two years of healing to regain the (limited) use of some of those muscles. But the healing is still happening. And it’s exciting :-)

Day 15 of Therasuit therapy

We are finished!!

I am very impressed with this program. Anne made significant progress in the three weeks. It really is amazing. She is VERY proud of herself.

Here are a few videos…

This is one of her walking with a cane. The therapist is moving the cane for Anne and lightly touching her left side. Anne is supporting all of  her weight – the therapist is only giving her cues to help her balance.

This second video is a sample of some of the exercises she performed. Her left foot is attached to a pully with weight on the end. She started this exercise on day one with .5lbs of weight. Her left leg was extremely weak, but it has gotten stronger… she is pulling 4lbs in this video! It’s the last day, so we celebrated by letting her eat potato chips… her favorite food :-)

Day 5 of Therasuit therapy

We’ve finished our first week. Anne has done amazingly well.

Specifically, she is less frightened and has more confidence; therefore, she is putting forth EFFORT! She turned to me several times today and asked, “How hard would you say I’m working? Just regular hard, or SUPER hard?” She is taking pride in her work ethic – this is something I haven’t seen before.

Here is a video taken while Anne is walking on the treadmill. There are no tears on day 5. She trusts that she will not fall, and she is having fun experimenting with the bungees. She is moving her right foot on her own. The therapist is just helping Anne with foot placement. Anne needs help with her left leg, but she is moving it much more than she did on Day 1. We are all proud of Anne (even Anne is proud of Anne – which is the best news yet!)

Day 1 of Therasuit therapy

Anne had her first Therasuit session today. (She will have 15, four hour sessions over the next three weeks.) It was intense. I think she cried for over half the time… not because she was in pain – just because she was MAD. This therapy is hard work, and Anne does not like to work hard. That’s actually one of her biggest obstacles. She puts forth little effort, and when therapists demand more, Anne gets mad.

My prayer is that one day she will channel that stubbornness into getting better. In the interim, we’ll just have to listen to her cry. It’s sooooooooo good for her!

Here’s a rough video of Anne walking on the treadmill. She walked a total of 15 minutes with two short breaks. You can hear her crying :-) Don’t worry, she’s not in pain. It’s just her way of complaining!

14 more days to go…

Some (not-so-profound) things I’ve learned…

I’ve learned a few things since Anne’s accident…

1. Anne does not have an “end-point.” In the early months after the accident, it comforted me to think that Anne had a fixed recovery period. Some therapists said one year… others said two years. But it’s been more than two years now, and Anne is still changing – and improving. None of us have “end-points.” I know I don’t! (At least I hope I don’t.) I would like to think I can still improve a little. What makes Anne any different? She will continue to grow and change her whole life. I’m good with that.

2. Anne needs to live life at a different pace than the rest of us. This seems obvious, doesn’t it? But I seem to forget this a lot – and Anne has a very inconvenient way of reminding me…

Like last Thursday afternoon when we had three scheduled activities back to back… Anne decided she needed to go to the bathroom between activity #1 & #2.

Continue reading

Two years.

The following is a copy of my last post on Anne’s CaringBridge site. Thank you for praying and supporting us during the last two years, and thank you for continuing to follow us on my blog :-)

It’s been two years since our accident.

This will be my last post on the CaringBridge site. In the months following our accident, this site was a source of great comfort as so many of you wrote words of encouragement and offered prayers for Anne’s healing. She has made great progress and continues to grow and change in positive ways… but, we are left with the harsh truth that there are parts of Anne’s brain that still have significant damage. We are now learning to live with disability.

Anne still doesn’t walk independently, nor does she have the use of her left hand. She is cognitively challenged by a limited attention span, and she will struggle to keep pace with her peers academically. Yet Anne has many strengths to help her compensate. She is verbally strong and has a deep-rooted desire to love and connect with others. She has an amazing sense of humor and a compassionate heart. She is weak in body, yet strong in spirit :-)

Despite the difficulties of caring for a disabled child, I am struck by moments of inexpressible joy (1 Pet 1:8) and a peace that surpasses understanding (Phil 4:7). These moments are made possible only by the Spirit of God producing them for me. God knows there is nothing inherently joyful and peaceful about caring for a brain-injured child! However…. “With man this is impossible, but with God all things are possible” (Matt 19:26).

I also take great comfort in knowing that God is sovereign. Our car accident wasn’t a case of us being in the wrong place at the wrong time. I don’t think I could go on if I believed I lost the daughter I knew and loved to brain injury just by chance. God’s word assures me there is a purpose for our pain, and therefore, we have the strength to carry on. But I also rest in God’s goodness. Even if I don’t understand His purposes in the here and now, I know that one day I will look back and see that His purposes were good.

So when kind-hearted people ask me how Anne is doing, my response is that she is “good.” Even though the question is directed to her physical and cognitive recovery, I’m not thinking of that. No, I mean that her person is good. God has a purpose for her, disability and all, and that is what is good.

Thank you for being with us these last two years. The ministry you’ve served in our lives is deep and oh-so-meaningful. You’ve carried us and sustained us, and we are so grateful. Feel free to continue to follow our family on my blog, kathrynJackson.com. We are moving on from recovery to adjusting to our new life with our new Anne. We would love to share our journey with you :-)

With much love and gratitude, Kathryn

And the old becomes new.

As we approach 2 years post-accident, we have much to be grateful for…

I remember the first time anyone mentioned “brain damage” to me. It was Anne’s second week in the PICU, and she was still in a coma. The PICU nurse innocently said that her neurostorms were just part of the “brain damage.” I just sat and cried as I considered that Anne might have significant brain damage.

I remember when Eric said that he couldn’t ever imagine Anne talking again. I couldn’t imagine her not talking! But a month after the accident when she did begin to talk, it was evident that Anne had significant brain damage. Even her voice sounded different. It still does.

When Anne came home from the hospital, I began to wrestle with how to grieve the old Anne – while at the same time – hoping for parts of her to return. Now I know that the old Anne is gone, and God has given us our new Anne. She is forever different. Even in heaven when she receives a new, unbroken body, her soul will be marked by learning to live with disability. She is simple, yet rich in spirit.

And now two years later, we are in a new house that has no memories of the “old” Anne. There is a finality about this new place. A finality that I am just now able to accept. We’ve been working toward this move for almost a year, and many times I wondered why it was taking so long to sell our old house… But God knew that I couldn’t handle leaving the place where I could see the old Anne in every corner. I loved that Anne. And I don’t see her in this house. There is no island where she would sit and pretend to cook. There is no fireplace where she would stand and sing for us. There is nothing in this house that reminds me of the “old” Anne. She is really …gone.

But. But.

God, in His great mercy has made her new. She is alive – and she is being transformed daily into a picture of God’s tender loving care toward us… his broken children. Anne is indeed special. And we are indeed blessed to know her.

A lot of good, a bit of bad, and no ugly

I learned something from my meeting at Anne’s school today. Anne still saves her worst behavior for home. Everyone thinks Anne is sweet and loving. She just has a need for attention and lacks self-control. We came up with a positive reinforcement system that will hopefully give her more attention and rewards for good behavior.

Which leaves me to deal with the ugly stuff at home. Stuff like being mean to Kate and yelling at me. Whining and crying and calling me “stupid” when she doesn’t get her way. You know… all the deeper “character” stuff.

So, I’m pleased. I’m thankful for the individuals that surround and support Anne at school. They can work on behavior. And I’m thankful that Eric and I are the ones that get to pour God’s truth and love into her. We get to work on her heart. Thank you for your prayers!

For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope. Jeremiah 29:11

The good, the bad and the ugly

I have a meeting at Anne’s school today to discuss her behavior issues.

Anne has always had behavior issues.  I was reading through an old journal recently and found a story illustrating how mean Anne was at 18 months old. And after the story, I had written, “She’s just like her daddy.” Ha! I thought that was funny. (Eric will be the first to tell you that before God changed his heart through salvation – he was selfish and mean!)

The difference between Anne’s behavior issues before the accident and now… is that before, she saved all of her ugly, stubborn, selfish and mean behavior for her family. No one outside our home ever saw that side of Anne. Away from home, Anne was shy and eager to please. “A perfect little angel” people would say.

You know, I like the world seeing the best in my children and leaving me to deal with the ugly stuff. That’s much easier than dealing with all the ugly stuff with teachers and therapists and counselors. Let’s just let everyone outside our home think that we have a perfect little family. I don’t want to share our “ugly side” with the outside world. Well, that’s not for me to decide, now is it.

So Anne has been turned “inside out.” She doesn’t have the self-control to keep anything in. Everything she does and says comes straight from her heart – everyone gets to see ALL the bad – and ALL the good.

And here’s the interesting part to me. Because she’s been turned inside out, it’s much easier to see the good. She’s fiercely loving & affectionate. She’s mean because sometimes she doesn’t feel accepted, and because she loves so deeply, the hurt is especially painful. I can look back to her “before-the-accident” self and understand much more clearly all of her crazy behavior. At the root of everything (both then and now), is a war between Anne’s deep desire to be loved and her compulsion to be in control of… EVERYTHING. Throw in all of her sensory issues (that were present before the accident) and we are left with one complex little girl.

I don’t know how to solve Anne’s behavior issues. But I do know that she is treasured by her Creator. He is passionate about Anne. He loves her like crazy. And my deepest desire is for her to find her value in Him – and not how she behaves at school (whether good or bad).

I would appreciate your prayers for wisdom and a spirit of cooperation and grace at my meeting today. We meet at noon. Thank you :-)