Seven Years

This morning, Kate woke up and said, “Mom, it’s the 13th and I’m sad.” This is the first time she’s acknowledged the anniversary of the car accident. This is good progress for Kate as she continues to grow in grief.

Anne before the accident

Anne after the accident

As Kate was crying, Canon offered these words of comfort…

When blacksmiths crafted swords thousands of years ago, when the sword was first made, the metal was very brittle. The blacksmith would dip the sword in fire and then in cold water over and over again until the metal was strong. It says in the Bible that God is with us in the fire. This is your fire, Kate. God is with you and he will use it to make you stronger.

God is with us in the fire. He is sovereign and good! We are thankful for God’s faithfulness to Anne and our family over the last seven years. We look forward to seeing how God’s goodness is revealed over the next seven years!

We also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

 

A Three-Year-Old’s Journey through Grief

This is a story that needs to be told. It’s intricate, subtle and beautiful. And hard to write. Bear with me…

The story starts with sadness. I opened the results to Anne’s neuropsychological evaluation which reported her IQ. I refuse to type the number, but in the out-dated standards, she would be labeled as an imbecile which would be one step below a moron. Words. They are so powerful. In this case, I purposed to put the number and its hurtful words aside. They do not define Anne. But the sadness lingered.

Reading Anne’s irrelevant IQ score helped crystallize a thought I had been struggling to grasp. I realized that behind Anne’s sharp-witted tongue is a little girl who, despite her changing body, will always be a little girl. Some parts of her brain have changed – but the innocent child remains. Anne will never stop saying, “I love you, Mommy,” in her sweet, sing-song way. This is my greatest joy and my deepest sadness.

This is the backdrop for the typical Sunday evening when I was kissing my two girls good-night. My 10-yr-old daughter, Kate, shares a bedroom with Anne. Kate’s journey through grief has been complicated and incomplete. As a three-year-old, her tiny mind struggled to reconcile the truth of Anne’s condition. Kate went through a stage believing that Anne would recover completely. A few years ago, this lie exploded into many healthy tears as she accepted that Anne would always be physically disabled. But Kate wasn’t ready to accept that Anne would be cognitively different. So for years, Kate coped with her brain-injured sister by thinking that she was the same in every way as her – except that she couldn’t walk.

Imagine the hurt that piled into Kate’s heart as I, her mom, comforted Anne first in every sisterly argument. I didn’t know. I had no idea the stories Kate weaved in her mind to cope with her loss.

Until that Sunday evening.

Kate and Anne had argued. I comforted Anne first. I always do. Kate should know better, right?

This night, God gave Kate the words that opened my eyes. She said, “Mom, it hurts me when you comfort Anne first.” And then I understood. I saw the tangled stories in Kate’s heart. God used my sadness over Anne’s IQ report to speak truth to Kate.

Kate, if you were a mom and you had two daughters – a five-year-old and a ten-year-old – and both were crying, who would you comfort first?

Kate, not understanding the implication, simply answered, “The five-year-old.” Then I delivered the hard news, “Anne is like the five-year-old. She always will be.”

The truth is painful, but it is freeing. Kate’s heart burst and all the years of tangled stories to cope with her sister’s injury came tumbling out as gut-wrenching, grief-filled sobs. She doubled over in tears as her whole body convulsed. The loss was so palpable. So painful. She cried out in broken speech, “I want a regular sister. I miss my regular sister.” And she sobbed – healthy, cleansing tears.

This is what the bottom of grief looks like for a three-year-old girl who lost her typical sister. Seven years later, she accepted the truth. Her sister is like a five-year-old child with a teenager’s sharp wit. Anne is complicated- just like Kate’s grief.

Now begins the hard work of back-filling Kate’s heart with the truth that I love her just as much as Anne – even when I comfort Anne first. It will be a slow, complicated work, but it is based on the solid ground of truth. No more stories. No more three-year-old coping strategies. Kate can peel away her three-year-old self and walk forward on the bare, stone ground of truth. We’ll rebuild her heart – one warm word and hug at a time.

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.

 

 

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

 

 

Celebrating Kate

A few nights ago, after all the kids were tucked away in their beds and I was reading in my big cushy chair in my room, I heard the pit-pat of little feet on the stairs. They were too light to be Canon’s, and since Anne hasn’t gone pit-pat on the stairs for years, I knew it was Kate.

Kate was holding the old picture of Anne – the one with eyes bright – a picture from before. And Kate was crying. “I miss Anne, mommy. I miss my big sister.”

I opened my arms and was thankful as she climbed up in my lap and I held her and let her cry.

Kate has a difficult job. She has to flit between the roles of big and little sister depending on Anne’s mood and circumstance. When Anne needs help, Kate has to switch to big sister role. When Anne wants to play, Kate switches back to little sister and lets Anne direct their play. Sometimes Kate gets it wrong, and Anne gets mad. But most of the time, Kate gets it right. It’s amazing, really.

That night, Kate was tired of the dance. She just wanted her big sister back. She missed the ease of just being.

As I held her, it occurred to me that Kate was especially crafted for this dual-role. So I lifted her chin and looked into her eyes, and this is what I said…

Kate, you are the only person in the world who could be Anne’s sister. God created you in such a way to be able to be both Anne’s little sister AND her big sister. He gave you a sensitive, nurturing spirit. But he also made you fun! You are both responsible and playful, nurturing and joyful. That is a rare combination. God knew before you were born that you would be born into a family that would need you…You are the perfect sister for Anne!

Those words brought life to little Kate’s eyes. She asked me, “Could Natalie or Shaylyn be Anne’s sister?” (Natalie and Shaylyn are Kate’s very sweet friends.) “No! Only you, Kate. God made YOU to be Anne’s sister, and nobody else, not even Natalie or Shaylyn could do it as well as you.”

Kate smiled and looked at Anne’s picture with a new perspective. She kissed me goodnight and practically skipped up the stairs. For now, she’s found her purpose, and she is full.

Here’s a video of Kate imitating “cups.” She spent hours practicing to be able to do this (the inspiration for her efforts is below)! If you listen closely, you can hear Anne singing along in the background. Normally, I wouldn’t post a random family video on Anne’s blog, but I just wanted to celebrate Kate :)

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 :)

Kate’s grief

Kate. She was only three when the accident happened. And she’s had tearful moments, but tonight – I think she faced the truth.

The truth that her sister will always be different, and the truth that her life changed dramatically on that sunny day in April. She misses her sister.

As she was crying – deep, guttural, painful sobs – I knew her pain. The sadness is so heavy you feel like you can’t breathe. My sweet Kate.

And then there’s Canon – who bravely walked through grief at the ripe, old age of seven. I listened as he quoted Scripture to Kate…

In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials,
so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. (1 Peter 1:6-7).

And then he explained, “Kate, God gives us hard things in life because he loves us and he wants us to be more like Him. It’s just like a spanking – it hurts, but it makes us better people.”

Sweet AnneAnd Kate cried and held the old picture of Anne. The one where she’s smiling with her whole mouth and her eyes are bright and full. And Kate cried and cried. And she went up to lay next to Anne and Kate cried and cried some more. And then I took Kate and put her in her bed. The bed next to Anne’s. And I laid down with her – and heard her sobs turn to whimpers and slowly her breathing calmed – and she was asleep. Sweet sleep. Sweet Kate. Heavy grief.

Anne Kate high quality

Anne & Kate then (ages 5&3)

Anne & Kate now (ages 8 & 6)

Anne & Kate now (ages 8 & 6)

Sister love

Sister love

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.