disability

Kate is six.

Today is Kate’s sixth birthday. To be frank, I’ve been very sad in the weeks leading up to this day. The old Anne never reached this milestone. On her sixth birthday, she was struggling to write the letter “A.” Kate has perfect, beautiful handwriting and can read 2nd-grade-level-chapter-books.

Oh, I know that comparing is futile. But I wonder if Anne will ever get to where Kate is right now – at the ripe old age of 6. After many tears, I’ve come to the conclusion that Anne is on her own track… Her “progress” can’t be measured by the typical standardized tests. She is measured using a different standard – a “Kingdom of God” standard. She might not be able to read and write as well as Kate, but she’s good at encouraging others. She can’t walk on her own, but she is tender-hearted and kind (well, most of the time ;-)

And because of Anne’s disability, Kate has the opportunity to advance in “Kingdom” lessons too…. like sacrifice and patience.

We celebrated the stuffins’ out of Kate’s birthday today. We did and ate all of her favorite things – surrounded by all of her favorite people. Ironically, we celebrated Anne’s sixth birthday with the same people. This is what Eric wrote about that day:

This morning Anne was surrounded by the Bratcher and McKinney girls – they all loved on her and cuddled with her and talked to her. God had a good plan before the foundations of the earth and in that plan included a morning such as this – all for little Anne – just to bless her and show me that HE cares about even the little things, and especially Anne.

I could write the same thing about Kate today! Though Kate and Anne share different skills and strengths, they have one vital thing in common – they both have been bought by the precious blood of Jesus, and He has a good plan for each of them. They are both good… just different :-)

Year in Review

It’s May. May is always busy. In fact, there’s a post from a year ago that I could have just copied and pasted. Nothing has changed! Well that’s not really true. A lot can change in a year.

At the beginning of this school year, I set two goals for myself… 1)Write more, and 2)Exercise more. I’ve done okay on those goals.

Both goals were primarily about me finding time to do the things that I love, but I learned some valuable lessons in the pursuit.

Because of my writing, I was asked to speak at a national women’s conference in February. I’m one of those rare persons who loves speaking. I did a little speaking before Anne’s accident, so I was very ready to try out my teaching skills again. The conference went well, and I received encouraging feedback, but when I came home and looked into Anne’s eyes, I thought, “My place is here.”

I had a similar experience when I went away for a girls’ weekend with my running buddies. We went to Nashville to run a half marathon. Now that’s a major accomplishment, something that I’ve always wanted to do… But when I came home, and hugged my Anne, I had the same thought. “My place is here.”

I think there’s a part of me that still strives to find significance outside the home. It’s a struggle for most stay-at-home moms. The culture places little value on our work at home, so we try to reach outside to find significance. Writing and speaking are worthwhile pursuits (and I hope I get more opportunities), but my most significant work is the work I do behind my front door – the sacrificial work of taking care of my family.

This is so counter-cultural. And it’s especially hard to believe when I’m sitting on the bathroom floor waiting for Anne to have a bowel movement or when I’m washing soiled sheets or brushing Anne’s teeth. But the most significant thing I do – the thing that has the most eternal impact – is working together with Eric to care for our children. Somehow, these humble pursuits are deemed valuable by God. So, I’ll keep fighting against the part of me that longs for significance. And if I need clarification… all I have to do is look in Anne’s eyes and know that (at least for now)…  “My place is here.”

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 :-)

A day in the life

Canon and Kate started back to school yesterday, but Anne’s school doesn’t start until next week – which leaves just me and Anne together all week. I thought it might be fun to document what a day with Anne is like :-) So here goes…

6:05am – alarm goes off. I hit the snooze button (twice).

6:25am – get up, get ready – pack Canon and Kate’s lunches and make their breakfast. I’m spoiling them this week with fresh pancakes hot off the griddle. They better not get used to it.

7:00am – pry Kate out of bed – argue about tights vs. socks – force her to brush her hair and help Canon change the turtle’s water (we are turtle-sitting for a friend …that’s another story for another day).

7:15am – get Anne up, change her pull-up and carry her downstairs to the van while herding Canon and Kate in that direction…

7:45am – drop Canon and Kate off. Anne tries to talk to the guy helping with carpool… “How are you? You sure are doing a great job…” But he doesn’t notice. sigh.

8:05am – arrive home and make breakfast for Anne. She wants sausage and waffles – with syrup. It’s bath day so I let her have the syrup – but I can’t sit with her while she eats – she makes too big of a mess – so I sit at the computer and eat my oatmeal while checking my email.

8:30am – wipe the syrup off of Anne’s face, hands, clothes & table – And I let her watch Curious George while I decompress for 30 minutes.

9:00am – It’s poopy time. I give Anne one glycerin suppository and carry her to the potty. We sing songs and play pretend games while she works to pass her bowel movement. We sing the “Days of the Week Song” and I’m shocked that she remembers that it’s Wednesday. Every day we go over “yesterday, today and tomorrow” and talk about the unique aspects of each day. She has a hard time with time concepts – that’s typical for frontal lobe brain damage – but today… she remembered! Yeah!

She thinks she needs another suppository to pass more – so I give her one more suppository and sure enough – she had to go more. After 30 minutes… she’s done. That’s actually pretty quick. (Note… glycerin suppositories have zero medication – they simply act as a physical stimulant… Anne still needs a little bit of help to get things started)

9:30am – clean up kitchen from breakfast and put a roast in the crock pot while Anne plays on her ipad.  I had to borrow  ingredients from my mom – who has her own apartment in our basement. She’s still asleep, so I have to be super quiet – I’ll tell her I stole vinegar worchestershire sauce later – when I give her a birthday card. She’s 73 today… she can sleep as long as she likes! By this time, Anne’s already had two seizures. The last one was a bad one – which means she comes out of this trance-like state extremely agitated. Much crying and slapping and biting. Ugh. It’s bath time…

10:00am – Let Anne play in the bathtub while I clean the bathroom and straighten the kids’ rooms. I check on the turtle – who has gone poopy in her fresh water. Typical. Next up… I have to wash Anne’s hair – which is my least favorite thing to do – except for maybe brushing her hair. Her head was hyper-sensitive before the accident – and unbelievably – it’s even more sensitive now. She screams and thrashes the whole time – I try to restrain her so at least something stays dry in the bathroom – but by the end… I’m soaking wet and we’re both upset. And then I have to brush her hair – it’s easier to do when it’s wet – but she still hates it. hates. it. Again, I have to hold her right hand as she tries to pull the brush from me. But she’s left with beautiful, tangle free hair – and I’m left needing a glass of wine – too bad I don’t like wine ;-)

11:00am – This is our special time. I read to her, and then we review her sight words. Then, I make sentences with her sight words and she practices tracking the words left to right. It’s hard for her to see the words on the far left… so we practice as she points to each word as she says it. This is hard for Anne. So I reward her by letting her lie down on her tummy and I rub and stretch out her legs and feet. She gets sleepy, so I lie down with her and we’re both asleep – and bam – we wake up and it’s after 12pm. Anne has an OT appointment at 1pm, so we start scrambling :-)

12:15pm – I change Anne’s pull-up and put on her braces. I don’t have time to fix her lunch, so we head to Wendy’s. She eats better in the car anyway. I don’t know why.

1pm – OT – and 45 minutes of freedom for me. I run to publix to grab a card for my mom + extras of all the ingredients I had to borrow from her this morning. I get back to the OT office to find that Anne has worked a puzzle she has struggled with in the past – but this time she did it easily. Progress. We like it!

2pm – I have 45 minutes until I have to pick up Canon and Kate – so Anne and I run a few errands. Anne talks to everyone she sees. She’s always so sweet to strangers. She forces me out of my introverted shell… and then we head to school. In the carpool line, Canon’s teacher asks to speak to me. Great – this is either really good or really bad – thankfully, it’s really good. In bible, his class is discussing Jesus’ parables, so after talking through the parable of the sower (Matthew 13), Canon’s teacher asks the class –  how would you classify the soil of your own heart? rocky, thorny, good? Canon’s answer: I hope my heart is good soil… but I’m not sure. His innocent humility touched his teacher, and she took the time to share with me. You gotta love that.

3:25pm – We all get home and give Me-Ma her birthday card (along with more Worcestershire sauce and Apple Cider Vinegar) and promise to take her out for a good meal this weekend. Anne always spends an hour with Me-Ma in the afternoons, so I can spend time with Canon and Kate and get dinner started. But today.. I have a meal in the crock-pot, so I’m writing this blog post – which has turned out to be really long!

It’s time for me to play with Kate. I’ll finish out the day with an evening post…

Grief, Silence and lots of stomping.

Sorry for the silence… Old-man grief came out of his hiding place to surprise me once again. I don’t know why I’m surprised – it’s Christmas after all.

I think what really did me in was going to Stone Mountain… My mom (being the extremely generous mom that she is) gave us a trip to Stone Mountain for Christmas… so we packed up and headed east for a one night’s stay at the Stone Mountain Inn for a bit of (fake) snow fun.

We spent a weekend at Stone Mountain in May 2009 – one year before the accident. Anne loved it.

On top of the Mountain in 2009

Anne climbing on the rope's course in 2009

Anne in all of her cuteness in 2009

I know I shouldn’t compare. It’s fruitless and worst of all… it’s painful. I just miss that Anne so much sometimes.

I’m still struggling with acceptance… I’m just not at peace with this new life God has called our family into. I don’t like how difficult it is; it’s tough living moment by moment… and right now I just feel like a whiny, cry-baby. I don’t know how to get to acceptance*. I think it has something to do with giving up control, releasing expectations, trusting that God is good, trusting that God will help me with this huge responsibility He’s given me – all the while continuing to fight and push to provide the best care to help Anne reach her maximum potential (*paraphrased from Stephanie Hubach’s book, Same Lake, Different Boat).  No wonder I’m struggling with acceptance – that all sounds impossible! Thankfully – God (alone) can do it for me.

All things considered, our family had a good time at Stone Mountain in 2011. It was just very different from 2009.  God still has a lot of work to do in my heart, but I’m grateful that He is faithful to finish what He has started in me… and in Anne. Our Anne is precious – and I am grateful for all of the parts of her that work well – and even the parts that don’t :-)

Stone Mountain 2011

How can you not love this girl?

Inner disability

Disability… I never thought I would spend so much time thinking about this word.  Our modern world of tolerance likes to color-coat disability and say… “there’s nothing wrong with them… they are just different.” Hmphf. I totally disagree. There is something very wrong with Anne – and there is something very wrong with all the other children that we know that struggle with disability. Their bodies are broken. How can you look at a disabled CHILD and not think… “This is wrong!!! It’s not supposed to be this way!!!!!”

Well, it’s not supposed to be this way. Disability is just one symptom of our fallen world. Hunger, disease, poverty, apathy – they are all symptoms of the brokenness in our world… and in our hearts.

Anne just wears her brokenness on the outside… The rest of us can hide it deep-down on the inside. There is something wrong with Anne. And with me.

Bottomline… we are all spiritually disabled. Remember the story of Jesus healing the paralytic (from Matthew 9 and Mark 2)? He heals the man’s inner and outer disability. First, He forgives the man’s sins – and then He heals him physically. I’m thankful that Jesus does both!

“So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day” 2 Corinthians 4:16.