Reminding Myself…God is in Control

The other night I dreamed that Anne could walk. I woke up that morning overwhelmed with joy which was quickly replaced with disappointment, but in the end, I decided to land on “hopeful.” In my half-awake state, I heard Anne calling from her bedroom, “Mommmm! I need to go to the bathroom!!!” Bleary eyed, I walked to Anne’s room, only to find her – not in her bed – but in the hall, right outside the bathroom. She can scoot to the bathroom, but she has never done it in such a purposeful way before.

I’m a firm believer in the sovereignty of God. If I look at the seemingly random events of my life through the lens of God’s sovereignty, sometimes I see patterns. That morning, Anne’s purposeful scooting to the bathroom immediately after my dreaming of her walking – seemed like a pattern. I would never go so far as to think it was a promise that Anne would walk! (The Bible doesn’t promise that!!) But…I do think it was a loving reminder that God sees the longing of my heart and cares. I was encouraged as I reflected on God’s sovereignty and could feel myself relax as I thought…God is in control.

I’ve also been encouraged by Anne’s progress in therapy. Her walking has dramatically improved. She is standing much straighter and crouching much less. Her endurance has also improved. The first day, she was able to stand for only 2-3 minutes. Today, she stood for 15 minutes. She also walked for 20 minutes (with support) on the treadmill. Her step size has increased as well as the speed of her walking. Also, she is propelling and steering her new walker independently. We typically see these kinds of dramatic improvements a few months after therapy. To see so much drastic improvement during therapy is very encouraging! See…God is in control!

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Anne with her new walker

Anne’s last day of intensive therapy is Friday. This session has flown by and seemed much easier to manage than in years past. That’s due in part to good friends who have offered to drive Anne for me a few times each week. I have been lifted and sustained by the body of Christ. Another reminder that God is in control!!

Looking forward, Anne will start three months of therapy in CHOA’s multi-million dollar robotics lab in February. She responded very well to their Physical Therapy program 1 1/2 years ago. So, I’m excited to see Anne continue to gain strength and stability this spring. I’m thankful that I can trust God to provide all that Anne will need exactly when she will need it. Afterall, He is in control ;)

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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.

 

 

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

 

 

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

 

December 2014 Update

December has bustled by in a blur. Three out of our five family members have extracurricular commitments making a crazy December even crazier. I’m not used to this pace!

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Even with our frenzied pace, Anne has done some amazing stuff this month.

Anne is completing her third month of hand therapy. Anne has regained a slight pincer grasp (a grasp using the thumb and index finger). In order to do it, she has to have intense concentration. I’m always amazed at both the extent of Anne’s brain damage AND the ability to overcome it! If we persevere with hand therapy, she might (after 3-4 years) regain enough functionality in her left hand to use it in her daily living tasks. It will be grueling work for Anne, but long-term, I believe it is important to encourage her independence.

 

Anne took THREE INDEPENDENT STEPS in Physical Therapy. I don’t have a video of the three independent steps, but you can see how well she is doing in this video:

Anne had LOTS of routine doctor’s appointments… including a trip to the neurologist to discuss medication for ADHD. Anne is doing great in school, but her short attention span limits her academic potential. We’ll begin medication in 2015. We need prayer for discernment as we introduce another medication into Anne’s system.

Anne continues to improve both physically and cognitively so many years after the accident. Her therapists and teachers continue to marvel at her progress. We are grateful this Christmas season for the faithful prayer support we still enjoy from so many of you. God’s goodness shines through Anne. For this, we celebrate and glorify our Savior.

Much love and Merry Christmas from our family to yours!

Pray for Anne…

November 2014’s prayer requests:

Please pray for Anne…

  1. That she would begin to regain the use of her left hand through regular hand therapy.
  2. Anne has just been diagnosed with ADHD (as a result of her brain injury). Please pray that we would find the best medication to help improve her attention.
  3. Finally, please pray for God to give Anne endurance and determination. She is being challenged both academically and physically and she needs the will to overcome!

Thank you for your prayers!!! Your continued prayer and support after all these years is so encouraging to our family!

Reformation Day & A Note from the Teacher

Today is Halloween, but it is also Reformation Day. Reformation Day is the day that Martin Luther nailed his 95 theses to the church door in Wittenberg, Germany. The debate which followed prompted the start of the Protestant Reformation. I love Reformation Day as it reminds me of God’s sovereign care to preserve the truth of His Word throughout history.

On a much smaller scale, I have been reminded of God’s sovereign care as He continues to work in Anne’s recovery. Recently, Anne started therapy for her left hand . After 4.5 years of NEVER being able to move her left hand, she used her thumb and index finger to pinch a goldfish and bring it to her mouth. If I hadn’t seen it personally, I would never have believed it possible. This is AMAZING.

Also, Anne’s special education teacher recently posted in the comments section, and it was such a glowing report, I wanted to highlight it :)

If I may add to your post. As some of your friends and church members may not realize how far Anne has really come. We had another annual meeting at school for Anne. It’s been almost 4 years since Anne returned to school since the accident. I will NEVER forget when she came into my classroom( along with Mrs. Jackson, Canon and Kate) and Anne asked, “Are you my mother( from the Dr. Seuss book)?” She’s come so far from not throwing things in the classroom to being able to function fairly well as a 3rd grader. She can do quite a bit of academic work, she’s starting to read, can type sentences and paragraphs with assistance and is even learning addition with regrouping, and multiplication as been introduced. She even started using the regular computer with a track ball. We are even discussing more assistive technology as she approaches middle school. Unthinkable 2 years ago when she would just turn the off and on switch on the computer. Also, she uses her walker throughout the school day. Quite an accomplishment from where she was…I firmly believe that Anne would not have come as far as she has without the support of her family and friends.

We are so proud of Anne. Her life is a testimony to God’s goodness and sovereignty!!

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Anne and her big brother, Canon

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Anne standing with her little sister, Kate

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Kate and I dressed up for our school’s celebration of Reformation Day

Happy Reformation Day :)

Very Full

I realize that I neglected to post Anne’s monthly prayer request update for October. Bottom line: our life is full!

I absolutely love my new job. It is energizing to be challenged academically, to interact with students and godly staff, and to teach again. In everything I do, I am always a teacher, so being an official ‘teacher’ makes it easy to be who God made me to be :)

I’m thankful that I am only a part-time teacher. Being part-time allows me to be home when Anne gets off the bus. It also allows me to take her to all of her doctor’s appointments!

Anne’s appointments are about to get very overwhelming…

  • This week, she starts acute hand therapy. We are finally at a place in her recovery to address her left hand. Her thumb joint is unstable and her left wrist and fingers are severely contracted. We will go to a highly respected hand therapist twice a week through December.
  • In January, she will start her 4th session of Intensive TheraSuit Therapy. This involves driving an hour to and from a therapy clinic every weekday for three weeks.
  • We are also working with a neuro-psychologist and neurologist to begin a medication regimen to improve Anne’s attention.

I also have two other children with hectic schedules of their own! So yes, we are very full.

When I begin to feel overwhelmed, I breathe. And then I ask for God’s help! I need to give myself grace to let the laundry pile up and to eat a few take-out meals for dinner. In the end, it’s only the unseen that has value…

Laundry is seen, but perseverance is unseen. Anne’s disability is seen, but the love of Christ in her is unseen. So we press on – trusting in the unseen person of Jesus, and finding rest in him in the midst of our overwhelming schedules :)

Double Digit Milestone

Today is Anne’s 10th birthday! It’s hard to believe…

At the beginning of the summer, I made a goal to have Anne 100% potty trained by her 10th birthday. Well…she did it! She’s totally potty trained. She consistently communicates when she has to go to the bathroom. She’s totally dry at night, and I can’t remember the last time she had an accident. She’s even wearing underwear at school and hasn’t had an accident there in a month! Yay!! No more pull-ups. We are so PROUD of Anne!

Another milestone is that Anne is walking semi-independently with her walker around the house. She still needs help transitioning in and out of a chair and avoiding obstacles, but overall, she’s doing great!!

Happy Birthday Anne!!