Anne’s Future

It’s been a while since I’ve written specifically about Anne and her recovery. Frankly, it’s because writing requires thinking and thinking about Anne’s recovery is painful.

Don’t get me wrong…our lives with Anne are filled with joy. She’s a precious jewel, and we are so thankful for her. But the joy doesn’t alleviate the pain. Rather, the joy and pain mingle together – coexisting in this relentless “life after brain injury.”

Sometimes it’s hard for me to see the oh-so-slow changes in Anne, but they’re there! She’s getting stronger. As her muscles get stronger, they also have to re-learn how to move with other muscles in order to do the simplest task – such as standing up from a sitting position. Anne still can’t do this consistently. One day she will!

I think the biggest change has been because of a drug we started giving Anne in August. It’s not really a drug. It’s labeled a “medical food.” Vayarin‘s website calls it: “an innovative non-drug clinical dietary therapy for managing ADHD symptoms.” Anne did not have ADHD before the accident – it’s just one of the many effects of her extensive brain damage. She is unable to take traditional ADHD medication, so we’re trying the nutritional “medical food” route…

We’ve definitely seen a positive change in Anne over the last few months. She still has an extremely poor attention span and impulse control, but interestingly, her awareness of time has increased. Let me explain.

One of the effects of Anne’s brain injury was that she constantly lived in the present. For Anne, the future was too abstract to grasp and everything that happened in the “past” she thought happened “yesterday.” But now, Anne has a broader awareness of both the future and the past. She can describe with detail everything that happened earlier in the day and understands that some things happened that morning and other things happened the day before. She is also aware that she isn’t stuck in her present – and she can plan to change her present situation. For example, if she is in the living room by herself and doesn’t like it…instead of thinking, “I don’t like this, and I’m very upset,” she can think, “I don’t like this and how can I change this? I can get down off of my chair and scoot around the house on my bottom and go find my mom.” Which is exactly what she does!

This is all very wonderful but awareness of the future also has its downfalls… Now Anne is asking hard questions like, “Mom, I thought this brain injury would be ok, but it’s not. When will it get better?” And…”I pray for God to let me walk again. Why doesn’t God hear my prayers?” In other words, she’s starting to wrestle with a future which is unknown – and forced to trust a God she can’t see. Seeing Anne wrestle with her faith is both heart-wrenching and heart-warming. Much like the mixture of joy and pain I experience every time I look at her. Joy for what she is…Pain for what she’ll never become.

God, I pray for you to reveal yourself to Anne in a way that is unique and meaningful to her. I pray for your comfort for her when she is discouraged and your grace for her when she is angry with you. Please God, use Anne to bring joy to others – redeem her pain and suffering with a divine purpose. Give her joy. Amen.

 

 

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Shared Suffering

“What doesn’t tear you apart will make you stronger.” I think I’ve read something like that once…

There’s nothing quite so sublime as to share suffering with another. Eric is the only person this side of heaven who understands the pain of the last 5+years. It is a shared suffering.

There was a time that the pain of Anne’s brain injury was so intense that it could not be shared but only endured. But now, as time and experience have numbed the sharp pain of loss, we have regained the capacity to carry one another’s burdens. This sharing of burdens is a door into deeper “oneness.” For Eric is the only one who knows the depth of loss and indescribable joy.

If shared suffering is our glue, then God is our rock. We stand on his sovereignty. We trust that all that led us to this present – the accident, the suffering, Anne’s recovery, and her new life – are all part of God’s perfect plan, not just for Anne, but for our whole family.

Somehow, we believe the accident saved us from ourselves – that God is using Anne’s brain injury and recovery to change the course of our lives for the better – even Anne’s life! For as hard as it is for her to live with a brain injury, for all the ridicule that she receives from her peers or the frustration she endures at not being able to control her own body, we trust that she is closer to Jesus because of it. And so are we – Eric, me, Canon and Kate – we are closer to Jesus. And we are grateful.

Years from now when Canon and Kate are gone, Eric and I will still have Anne. Sweet Anne. She is our glue. But we stand on our rock. Thank you Jesus.

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Tomorrow will be Five Years…

Tomorrow marks five years since the car accident which left Anne with a traumatic brain injury. Five years with our new Anne. Five years without the old Anne.

We’ve lived through so much heartache and pain. We’ve all grieved – each at our own pace and in our way – and we’ve come through to the other side.

We are a family marked by disability. We park in handicapped parking spaces and work together to lift Anne’s wheel chair in and out of our van. Each child can assist Anne in walking to and from the kitchen table and help her get comfortable in bed. Her little sister helps Anne bathe and brush her teeth. And Anne’s older brother carries her up the stairs and comforts her when she’s angry or scared.

We live at a different pace. Anne’s therapy schedule only allows one extracurricular activity per child per semester. Sometimes I feel like the world races by us like a time-lapse video – while we’re stuck in our slo-mo world. Each frame of our lives is affected by Anne’s brain injury.

Recently I was telling a friend that there will always be a part of me that will remain sad. Sad for the life that Anne will never live – sad for the milestones that she will never reach – sad that I will never see the old gleam in her eyes – sad for what we’ve lost. But our sadness does not minimize the gratitude we have for Anne’s life and progress.

We are thankful for her quick wit and crooked smile. Thankful for her simple faith and deep love of people. Sometimes I hold her in my lap and am overwhelmed with gratitude that I get to be her mom. I feel so privileged – so honored to be Anne’s mom. She is a jewel and she’s mine!

So tomorrow we will celebrate Anne’s five-year milestone. We will thank God for her life. We will thank God for her progress. We will cherish her day and push our worries for the future aside. Anne is alive! And that is something worth celebrating :)

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Spring 2010 / Age 5 (one month before the accident)

Age 6, 5 months after the accident

Fall 2010 / Age 6

Fall, 2012 / Age 8

Fall 2012 / Age 8

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Fall 2013 / Age 9

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Spring 2015 / Age 10

 

 

The fight for our marriage

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I took this picture in church this morning (when I should have been listening to the prayer!) It absolutely melts my heart. Eric is the best of the best. I’m so thankful to be married to him… But our marriage has been severely tested since the accident…

I now understand why so many marriages crumble after tragedy – especially if the tragedy concerns your children. The grief is so heavy that it can take all of your energy just to get through the day. There is rarely emotional energy left over to connect with your spouse.

The problem is compounded by the fact that everyone grieves differently. Yes, I know most people go through the five stages of grief, but people go through the stages at different rates. The wife might be stuck in denial while the husband is in the anger phase. One spouse might get to acceptance quickly while the other stays in depression for years.

Meanwhile the marriage suffers because it just takes so much more effort than it used to – and who has that much energy? It’s definitely easier to give up than to fight to sustain the marriage.

But I married someone who refuses to give up. My grief after Anne’s accident was so thick at times that it would have been easy to give up, but Eric was committed to pursue me, and God gave us the grace to fight.

Now that we’ve been through our darkest days and come out on the other side together, I figured it was time to celebrate! So for Eric’s birthday, I gave him 12 pre-planned date nights* – one for each month of the next year. Every date is different. Some are extravagant and others are just simple nights at home – but every reservation has been pre-made and pre-paid, so we have no excuse… we must go!

Eric's birthday present

Eric’s birthday present

Our first date was last night. We went to the Atlanta Fish Market and then to the Aquarium. Eric said afterwards that it was rejuvenating, and that was my hope…. that as we take time to have fun together, this will give us energy to manage our little family – because parenting is harder now. Well… Everything is harder now. But that just makes life richer :)

Here’s to a great year, and the fight for a great marriage!

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*And by the way… I stole the “date-night” idea from a friend’s Pinterest Board. Here’s the original link :)

Milestones

A friend kindly wrote to me today… “Thinking of you this week.”

I had to stop and think about what she could mean… And then I remembered, “Ahhh. Saturday is the day.”

Yes, Saturday will mark three years since Anne’s accident. April 13th becomes easier with each passing year. The pain of losing Anne becomes more dull, and the joy of gaining Anne becomes more evident. God is good!

I’m actually hostessing a baby shower on April 13th. I can’t think of a better way to spend the day than surrounded by friends celebrating a new life. God’s mercies are new every morning!

And while we’re on the subject of milestones, I just published my 100th post on my bible:365 blog. If I taught kindergarten, I would do something fun like… string together 100 paperclips or eat 100 M&M’s (ugh). But I’m not a kindergarten teacher, so I just had a cookie ;)

Happy 100 posts to me! And more importantly… Happy 3 years of enjoying our new Anne!

Hangin' with the boys

Hangin’ with the boys

Face painting with Canon, Kate and cousin Isabella!

Face painting with Canon, Kate and cousin Isabella!

A picnic in the front yard!

A picnic in the front yard!

We love our Anne!

We love our Anne!

A longing

I’m listening to the house… it’s quiet and I need to go to sleep. But I don’t want to, because something feels undone – unfinished… unsatisfied. I’m trying to write about Anne – but everything’s the same – she still has a brain injury.

When I pray for God to heal her – and I mean the “all-at-once” kind of healing… I know I’ve become desperate. God doesn’t work that way very often – because he cares more about our holiness than our happiness. There will be plenty of time for happiness in heaven – for now, it’s character building time.

But right now, in my unsettled, discontent heart… I just want to be happy. But the happiness is elusive.

When I feel this way – unsettled – like something’s unfinished, I know I’ve been grasping at distractions to fill the achiness. It’s a spiritual achiness – a longing… and silly entertaining distractions don’t cut it. I need the Savior. I need His touch. I need him to replace the discontent with contentment, the anxiety with peace.

I need to go to bed :) And pray, and wait, and hope that tomorrow will be better.

Lost December

I’m just tired of being sad. This December, I sorta went into an apathetic shell. Thinking back, I think I was just protecting myself from the grief that comes around the holidays. But that shell just got sandblasted. I just need to learn that it is okay to be sad during December.

In 30 short minutes, a new year will be here, and I feel a bit sad. But I’ll say that sadness is a notch better than apathetic, because at least I’m feeling something :-)

But don’t worry. God is here. He always is.

May Anne continue to make progress in 2013! And here is my list of “gratefuls” for 2012.

Key Lime Pie
Good neighbors
Anne’s crooked smile
Eric’s job
Canon’s enthusiasm
Special time with Kate
Therasuit Therapy
Erin and Stacy at church
French Horns… (I love the melancholy tone of a french horn)
Late night movie watching with Eric
My Wednesday bible study group
Mrs. Bush (Anne’s para-pro)
my new iPhone

and finally… the story of Joseph (from the Bible).

God is good. Happy New Year.

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.

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?

How God prepared 7-year-old Canon

My fellow blogger and friend, Shelly, recently wrote, “If you want to make God laugh, just tell Him all about your plans for your life.”  HA! Isn’t that so true?

Eric is a big planner. Ever so often he’ll try to get me to sit down and think through short-term and long-term goals for our family. I think I’d rather have a stomach bug… seriously. But I can guarantee that neither one of us ever planned to be parenting a brain-injured child. Never. But mysteriously, God had it planned for us all along.

Looking back, I can see very specific ways God led our family to prepare us both financially and spiritually before that fatal April day.

A few months before the accident, I remember being struck with a deep gratitude by how extraordinarily good our lives were. Eric’s job was going exceptionally well. I was serving in our church in a deeply satisfying way. Anne had turned a corner on all her hyper-sensitivity issues and for the first time EVER – all three kids were thriving (at the same time ;-). We were surrounded by a tight community of friends from both church and the community. Every aspect of our lives… was good. I remember praying with Canon one night – thanking God for all the goodness in our lives and then asking God to give us the strength to persevere when hard times would come. Canon stopped my prayer to ask about these “hard times.” And so began a series of conversations we had over the next several weeks about hardship – and how it was inevitable for every believer. We talked about how God is glorified through hardship – how God builds our character through suffering. Canon was extremely interested in the topic. I just remember marveling at how thoughtful he seemed to be at only 7 years old.

Now I know that I should have been marveling at God… not Canon :-) It was God that was bending his heart and mind to thirst after such hard truths at so young an age. Just think about the kindness and gentleness of God to prepare little 7-year-old Canon for what only He knew was about to happen. Those conversations laid the foundation for all the painful talks after the accident about suffering and grief.

Our God is sovereign, and I am. so. grateful :-)

“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.