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.

From the Intense to the Mundane

Anne finished Intensive TheraSuit therapy this week…fifteen sessions spread out over four weeks. She worked on strengthening her left side….

and in the process, gained confidence to aid her in balance and walking.

Anne LOVED the therapy saying, “I’m sad it’s over, Mamma.”

In some ways, I am too. The past two months I’ve been hyper-focused – first on planning for suit therapy (lots of logistics involved in caring for Canon and Kate while I’m in therapy with Anne) – and second on pushing through the crazy schedule.

We’ve had lots of help…co-workers provided meals, family and friends provided rides for Canon and Kate…we were even blessed with anonymous Christmas gifts for our entire family! God has provided through the love and care of His people.

But now that the hustle is over, I find myself looking forward…there are no intense schedules to coordinate or complicated logistic puzzles to solve. Only the normal grind of everyday life.

I wonder what extraordinary things God will do in the midst of my ordinary schedule? He loves to surprise me with unexpected gifts – sweet joys in the middle of gray, winter days. In the middle of the mundane, I will watch for His blessings :)

We wait in hope for the Lord,

he is our help and our shield.

In him our hearts rejoice,

for we trust in his holy name.

Psalm 33: 20-21

Happy 2016!

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.

The End of Summer

It’s hard to believe Anne goes back to school tomorrow. Part of me is sad that I won’t have as much time with her. But Anne thrives in the school setting. She’s excited, and I’m happy for her :)

Anne had a fantastic week at Camp TBI… For one week, she gets to be a regular kid going to camp. What a gift!!

Just before Anne climbed the rockwall!!

Anne with her counselor, Haley

Anne telling jokes at the talent show!

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

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!

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:

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 :)

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

Fall 2010 / Age 6

Fall 2012 / Age 8

Fall 2013 / Age 9

Spring 2015 / Age 10

An “Anne” Update :)

After spending three months in hand therapy (Oct/Nov/Dec) and three weeks of January driving back and forth to suit therapy, February has been a welcome break!

This break is short-lived however, as Anne receives Botox to loosen the tight muscles in her left arm, hand and foot tomorrow (3/3). After Botox, Anne will begin another three-month session of hand therapy (March/April/May) and then start a three-week session of Suit Therapy in June.

I guess I’ll rest in July :)

Anne is doing really well…she is showing improvement in walking with a cane and has recently displayed a stronger, more independent spirit. God continues to provide for our every need – spiritually, physically and emotionally. We’re very grateful for His constant provision!

Thank you for your continued prayers and support in this journey. If you think of it, please pray for endurance for Anne and us to persevere through July :) And mostly, for Anne to continue to improve as a result of her many therapies.

I believe that I shall look upon the goodness of the Lord in the land of the living!

Wait for the Lord; be strong, and let your heart take courage; wait for the Lord!

-Psalm 27:13-14

19 years later…

Today is my birthday. I don’t write this to elicit tons of birthday wishes. I just want to savor the day.

20 years ago, I was 24 and very sad. I felt like a failure because I was still living at home…an over-achiever with two college degrees – but not a clue what to do with my life.

But what a difference a year makes!

By my 25th birthday, I had secured a satisfying job as a high school science teacher and in my spare time, I was spending lots of time with Eric, my future husband :)

However, at that time, my relationship with Eric was complicated – mainly because he was the primary caregiver to his mom, who was suffering from brain cancer. For the previous two years, she had fought valiantly – enduring experimental treatments, but two months before my birthday, the tumor had returned, and she waved her white flag. In the months leading up to my 25th birthday, she stayed in bed – limited by the growing tumor. But on February 24th, 1996, she made a decision to celebrate me.

As soon as my work-day ended, I drove to Eric’s condo where he lived with his mom and brother. She had ordered her sons to go to the grocery store to prepare for my birthday. I walked in to see yellow roses and store-bought cupcakes. She was sitting on the living-room sofa. This was the last time I saw her out of bed. She would die at home, four months later.

Fast forward 19 years and this is still my favorite birthday memory. Eric’s mom didn’t know me long, but she instinctively knew I was the future-wife of her first-born son. Her name was Anne. Our precious Anne is her namesake. I’m so thankful for Eric’s mom!

Happy 44th birthday to me. I’m sure Eric’s mom is celebrating from heaven, cheering on her precious Anne, laughing with Kate and being proud of Canon. I can’t wait to see her again!

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An Unpredictable Special Needs Blog

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