Time is Different with Disability

This morning was Anne’s first day of summer. She woke at 7:30. I gave her a bath. She loves baths! After dressing, taking her medicine, and eating breakfast, it was almost 9:00 am. Time. It slips away like water. Everything takes longer with disability.

After breakfast, Anne watched the Wiggles while I finished report cards (summer break for teachers is a myth). Then we read a book together.

For the last seven years, my prayers for Anne have been for her to walk and read. God answers prayer. Sometimes he answers quickly and dramatically. Other times, his answer is a slow work – shifting subtlety over time – molding character through patience and perseverance. It is true that Anne can walk and read better than she could seven years ago. This is something to be celebrated. She read the whole Little Bear story, all eleven pages. She read three lines completely independently. I’ve never seen her do that before. She was highly distractable but she had a great attitude as I redirected her attention back to the story. She read with comprehension – often re-reading lines with more emotion to emphasize the meaning.

It took approximately 45 minutes to read the entire story. We were interrupted by a telemarketing call. After I hung up, Anne said, “That was awkward.” We laughed so hard together. The left side of her mouth used to droop when she smiled. Now her smile is almost even – and it’s perfect when she laughs. I love her laugh.

Anne’s almost-even smile

 

We finished the story at 10:30 am. Time. It slips like water. But it’s summer, and there is time to give. Anne is my treasure – a gift to be savored!

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.

Walking on…

Summer…oh Jesus. I need help during the summers!
I’m not wired to play Candy Land and Chutes and Ladders with Anne for HOURS upon HOURS. Lord, help me!

This is my prayer of desperation! God hears ALL prayers. He’s sent me so much help for this summer. The help comes in a variety of shapes and sizes – but it’s help. Anne has camps, siblings, paid helpers, intensive therapy, the beach and the pool. We’re on Day 2 of 65. It’s all good.

After transitioning from part-time to a full-time teaching position this January…I’m tired. So tired of school – that I’m actually looking forward to summer. My two days with Anne have been such a welcome change of pace. She continues to grow, change and recover. She’s doing so well.

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Unbelievably, Anne turns twelve this fall. Her hormones are making her moods swing more wildly – her bursts of anger and frustration are more intense. I need wisdom to navigate how to appropriately discipline a hormonal, almost-12 year old tween with a brain injury! God has a sense of humor.

In all circumstances, God leads Eric and me to lean more deeply into Him – looking to God for strength, energy, wisdom, guidance and faith. As the pastor preached last Sunday, “Don’t give up. We’re not home yet!” By His grace, we continue down this road – the road God has planned for our family. Whether good or bad, easy or hard – it is God’s plan – so we walk on…

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Thank you, Sarah Figaretti, who played with Anne so I might have the time to write this post!

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Some of Anne’s more recent adventures…

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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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A Daughter’s love and A Daddy’s heart

We dropped Anne off at overnight camp yesterday. It’s an amazing camp for kids with TBI. They provide a one-to-one counselor to camper ratio so that kids with disabilities can experience the independence and fun of a typical camp. Anne loves it.

As much as we cherish a break from caring for her, we miss her person while she’s gone. Kate struggled to go to sleep last night without her sister, “She talks me to sleep, Momma. I miss Anne.” So we send Anne letters and pray for God’s protection.

Eric wrote Anne the most beautiful letter. Here’s an excerpt…

Little Anne,

…God has always taken care of you and he always will. He took care of you when you were in the hospital and could not speak or move, and He is with you now. God healed you because He has giant-sized plans for you. We are so thankful that you can talk to us and bless us with your kindness, love and even your wit.

Anne, you are such a blessing to our family because you love us so unconditionally. You are quick to forgive, have a short memory for wrongs, never hold grudges, and are quick to show us love. God gave you a special joy in your heart, and it is infectious. Keep sharing that joy you feel with others….

Love,
Dad

Eric beautifully summarized what I have been feeling all summer. Even though it is physically difficult to care for Anne – and will only get harder as we both get older – to be loved by Anne is other-worldly. It’s a taste of heaven – a holy encounter. Her love is lavish and unfiltered, uninhibited and free. The sheer weight of her love is staggering. Words can’t describe it.

I thank God for every squeal of delight and unsolicited, “I love you, Momma.” This is God’s special gift for me and Eric. God supplies our every need in this difficult but joy-filled journey. Thank you, Jesus, for our little Anne :)

Photo courtesy of Bobbi Jo Brooks Photography

Photo courtesy of Bobbi Jo Brooks Photography

Summer fun and Summer challenges

This morning marks the first time ever (for our “new Anne”) that she has gotten out of her bed all by herself! She was bored and impatient waiting for me to come up to get her – so she got out of bed, scooted herself over to her bookshelf and started to play. This is what I found when I came upstairs this morning!

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I was THRILLED! This mess represents desire, determination, motor planning, independent thinking, and courage with a bit of mischievousness. These are new qualities that we are seeing in Anne this summer. She seems to be restless – like her brain is craving new challenges and stimuli. This is a good sign of growth and progress – but it is also challenging for the whole family! We feel like we’re cleaning up after Anne ALL. THE. TIME.

Fifteen minutes later, Anne’s room looked like this:

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I’m happy to clean up after Anne if it means she’s making progress… But she does keep us busy!

Next week, Anne begins three weeks of intensive TheraSuit therapy. This could not come at a better time as she is ready to be challenged! If you think of us, please pray for energy for both me and Anne as we tackle the taxing schedule of intensive therapy. Thank you for your support and prayers and for sharing in the joy of Anne’s long-term recovery!

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

 

 

Therapy Milestones

Right now, I am sitting in the waiting room of a therapy center located an hour away from my home. I’ve been here every day for the last three weeks. Anne is finishing up another round of TheraSuit Intensive Therapy. I’ve been juggling my job, Anne’s therapy and normal mom duties. I’m done.

Each day in this waiting room is full of adventure. I’m here for hours every day. Kids with walkers, canes and scooters move past me, and typically they are crying. The same therapists deal with screaming kids every day – patiently pushing them past their comfort zones. There’s something refreshing about being around special needs kids. There is no pretense. What you see is what you get…

They are kind and compassionate. They have grit and determination. When they’re mad, they yell. When they’re happy, they squeal. It’s so simple – and real.

Anne is doing fantastic during therapy. Her strength, energy and balance have all improved since the last session. She cries, yells and squeals just like every other kid in therapy. She’s a mess. But she’s a good mess :)

Therapy will end in another hour or so, and Anne and I will start the hour-plus commute home. Tomorrow is the last day, and I can’t wait!

Sometimes I wonder if all the therapy is worth it. I wonder how much to push – how much time to sacrifice. But then I look at the progress…

Look at the difference between these two videos. The first is of Anne last year. Look at how wobbly and weak Anne’s legs are. The therapist is giving maximum assistance, holding Anne with one hand and moving Anne’s cane with the other. The second video was taken today. Anne is with the same therapist, but she is so much stronger!! Anne is able to manage the cane independently and the therapist is holding her lightly for balance/safety. The difference is amazing.

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2015

I guess we’ll keep taking one day at a time – resting in God’s strength to get through today and trusting in His faithfulness to provide the strength for tomorrow :)