Anne’s Four Year Milestone

Today marks 4 years since the accident. On April 13, 2010, Anne woke up as a healthy, able-bodied, 5-year-old child. At noon, she was almost killed in an automobile accident.

Every day since then is a gift for which we are profoundly thankful.

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Lately I’ve been tweeting some of Anne’s more pithy sayings. Here are a few of my favorite tweets:

Anne finished up her second week of Intensive TheraSuit therapy on Friday. The end of the second week is definitely the most difficult. Here is a video of her walking with a cane late in the day on Friday. Her legs look like noodles. She is SO tired!

We are so thankful for our precious Anne and we can’t wait to see what incredible things God does with her life!!!!!

 

TheraSuit Year 3: Week one update

Anne had a fantastic first week!

I think Anne has finally reached a point in her cognitive recovery where she realizes she has a brain injury AND she understands she has to work to get better. Because of this realization, she is determined in therapy. I’ve never seen Anne work so hard with such a great attitude! I’m so proud of her.

One of the ways TheraSuit therapy works is through the unique design of the “suit.” Every movement is more difficult in the suit. It’s sort of like a baseball player taking practice swings with weights on his bat. When he steps up to the plate, the regular bat feels lighter and easier to swing. Similarly, when Anne performs all of her exercises in the “suit,” she is able to strengthen so many muscles at once – making it easier for her to move without the suit. One highlight of the week was Anne’s ability to walk on the treadmill. She walked 20 minutes on the treadmill while wearing the suit! That’s a huge accomplishment for Anne.

Another praise from the week was that God preserved Anne’s health. This is truly miraculous as Kate, Canon and Eric have all fought off horrible colds with fever and severe congestion. Please pray that Anne and I continue to stay healthy throughout the next two weeks.

Thank you!

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Pray for Anne…

April 2014’s prayer requests:

Please pray for Anne…

  1. Praise God that MEDICAID APPROVED ALL of TheraSuit therapy!!!! SO thankful!!!!!!!
  2. Anne is still battling a stuffy nose…please pray God would give her the will and strength to persevere in therapy and also that he would heal her quickly,
  3. Please pray that Anne would improve in strength, balance, walking and eye tracking. Anne has responded so well to this therapy in the past. We are grateful for the opportunity and provision to do this therapy for a third time!
  4. Finally, pray for wisdom for the therapists and for Anne and me to be encouraging to the therapists and other families – that God would be glorified in our lives and witness.

Thank you so much! Your continued prayer and support after all these years is an inspiration to our family!

TheraSuit therapy 2014: Day 1

I’m writing from the waiting room of the therapy clinic. This is a brand new clinic to us with new therapists and a long way away from home. But TheraSuit is worth the drive.

Anne has done AMAZING today. Not one tear. Not even a complaint. Nothing but determination and a GREAT attitude. Honestly, I’m shocked!

Tomorrow will be harder, but I’m encouraged by the excellent start!!

I have two pressing prayer requests:
First, we are still waiting on the last step for insurance approval. Please pray that approval would come TOMORROW! If we do not receive prior approval tomorrow, we will have to suspend therapy until we receive it.

Second: Kate is getting over a really bad cold. If Anne catches Kate’s cold, Anne would miss therapy until she recovered – which is typically 5-7 days for Anne. Please pray that Anne would stay healthy!

Thank you!

Roller Coaster ride

Anne is changing.

Typically, Anne progresses in her recovery painstakingly slowly. But lately, the changes have been super quick. Some changes are good – and some seem “bad” but my experience with Anne is that all change is symptomatic of a deeper healing of the brain. So I try to view change as progress.

Here are examples of some of her most recent changes (both “good” and “bad”).

  • She has a stronger will and even less patience – which means she screams (a lot)!
  • She will not wait for you to help her – she stands up and tries to walk wherever she wants to go- whether I’m there to help her or not.
  • She loves playing “pretend” and lately her pretend games have been more nuanced and complicated.
  • She spills her drink at every meal – on purpose.
  • She’s stopped telling me when she needs to go potty.
  • She’s more oral – chewing on her hands when she doesn’t have an appropriate “chewy tube.”
  • She’s walking better – with more fluidity and better balance – and even practicing more with a cane!
  • She consistently recognizes sight words or tries to sound out words that she doesn’t know.

Anne’s life is such a roller coaster…mainly because the brain is so complicated!

Anne begins three weeks of intense TheraSuit therapy on Monday. Her private PT thinks this is an opportune time to start this therapy because of all the changes in Anne. Something is happening in that little brain of hers and this upcoming session of intense therapy will only challenge her toward further improvement.

Stay tuned for updates and pics of Anne’s progress during the next three weeks. Thank you for your support and prayers!

Pray for Anne…

March 2014’s prayer requests:

Please pray for Anne…

  1. With a slight increase in medication, Anne’s seizures have disappeared AND her stuttering seems to be gone completely!!! So thankful :)
  2. Anne will have another three-week round of Intensive TheraSuit therapy beginning March 31st. Please pray that Anne would improve in , strength, balance, walking and eye tracking. Anne has responded so well to this therapy in the past. We are grateful for the opportunity and provision to do this therapy for a third time.
  3. Finally, pray for Anne’s encouragement. She is desiring to become more independent (which is wonderful) but sometimes this desire causes her frustration as there are still so many things she cannot do without help.

Thank you so much! Your continued prayer and support after all these years is an inspiration to our family!

The Power of Words

Lately I’ve been finding myself especially grateful for Anne’s words.

A friend of mine graciously stayed with our kids recently so Eric and I could go out to celebrate my birthday (yes, Happy Birthday to me :). When we got home, my friend said, “I had no idea Anne talked herself to sleep!” It’s true. I actually have never considered how strange this is!

Sometimes she talks to Kate; sometimes she talks to herself, but every night she giggles and sighs and in the quiet darkness, she is lulled to sleep by the sound of her own voice. It reminds me that her voice is a gift.

It was the first part of her brain to switch back “on” after the accident. She barely had the ability to move her right index finger, but she could talk. Her eyes were fixed, un-moving, but she could talk. Even now, her vocabulary, sentence structure, reasoning and conversation skills are her strength and she daily uses this gift to bless others.

Lately, Anne has been even more discouraged about her physical disability. She wants independence so badly. She also struggles with watching her independent family carry on their independent lives around her. She complains, “Why can’t I walk? I’m tired of this stupid brain injury. When will it go away, Mama? Why doesn’t anyone pay attention to me? Nobody loves me.”

I’m so grateful that Anne is able to communicate her deepest needs and longings to us. The beauty of Anne’s ability to utter words is that she is also able to absorb words. And she absorbs them deeply, so my answers to her, the words I speak to her, have power. So before I answer her, I pray. I need God’s words, not my words.

Anne. Listen to me. God has given you a gift. A very important gift. He has given you the gift of words. Everyday I watch you bring joy to others through your words. You will have to fight to overcome your brain injury for a very long time. But God uses your brain injury to bring joy to others. You are a treasure.

The word, “treasure,” was the word Anne needed to hear. She repeats it daily. “I am a treasure, mama. God thinks I’m treasure.” 

Words. They are so important. Lately, I’ve been praying for God to show me how to use my words more effectively for Him. I recently shared Anne’s story with Kat Lee, the founder of the Inspired to Action podcast. If you’ve never heard me talk about the gory details of the accident, I share that story along with how God’s presence was so palpable both during and after the accident. I also talk about Anne’s gift of words and ways to help moms of special needs kids. It’s so easy for me to be careless with my words! But I pray that my words in this podcast reflect God’s goodness and faithfulness.

One of those days

Why? Out of all days to come home early from work…why did my husband decide to come home early today!?

It’s been one of those days. The kind where I started a dozen different projects and didn’t have time to finish any of them – and the evidence of my incompetence is strewn all over the house…homeschool books, toys, groceries that haven’t been put away (at least I made it to the store, right?).

The House. Is. A. Disaster. And just when I think I might have enough time to clean up the mess before my sweet hubby gets home, I hear the garage door open. My hair is in a ponytail and I’m sporting my favorite 20-year-old sweatshirt. Oh well. It’s just been one of those days.

In the midst of this chaos I keep myself from freaking out by remembering my purpose.

My purpose comes from this passage of Scripture:

And they came to Capernaum. And when [Jesus] was in the house he asked [the disciples], “What were you discussing on the way?” But they kept silent, for on the way they had argued with one another about who was the greatest. And he sat down and called the twelve. And he said to them, “If anyone would be first, he must be last of all and servant of all.” And he took a child and put him in the midst of them, and taking him in his arms, he said to them, “Whoever receives one such child in my name receives me, and whoever receives me, receives not me but him who sent me” (Mark 9:33-37).

My purpose is based on the rules of God’s Kingdom rather than the principles of this world. Jesus teaches in this passage that the Kingdom is paradoxical – what seems meaningless in this world has great value in His eyes. And then he holds a child…an insignificant child, and makes the most extraordinary claim that if you care for those with little status in this world – you will receive fellowship with God Himself! Whoa.

The house may be a mess. My to-do list may be half-done, but I cared for my children today. I can go to bed satisfied with my work…and I will tackle the rest tomorrow :)

 

Pray for Anne…

February 2014’s prayer requests:

Please pray for Anne…

  1. Anne’s seizures have returned slightly this month, but her perseveration (stuttering) has improved. Please pray for both seizures and stuttering to go away.
  2. Please pray that Anne would improve in balance and eye tracking. These two systems are actually connected in the brain! So please pray for God to continue to heal these vital parts of her brain.
  3. Finally, pray for Anne’s encouragement. She is desiring to become more independent (which is wonderful) but sometimes this desire causes her frustration as there are still so many things she cannot do without help.

Thank you so much! Your continued prayer and support after all these years is an inspiration to our family!

Hitting the Pause button*

After writing every day in 2013, I decided to give myself a break. What was supposed to be a break from writing has come dangerously close to a break from living. I’ve found that as I’ve detached myself from the daily discipline of writing – that I’ve retreated into a mind-numbing world of escapism. Netflix, Facebook, Roku – whatever its name – I’ve sought solace there. And of course, now that the month is over, I’m left feeling empty.

But I think that’s okay. Because I’ve learned some valuable lessons…

I’ve realized that one benefit of my daily bible blog was a constant supply of short-term goals. As I’ve hit the pause button on writing, I’ve also hit the pause button on accomplishing any goals. And without goals, I begin to feel overwhelmed by the future and the sheer scope of caring for Anne. I need short-term goals to keep me grounded in the present and help me stay dependent on God.

I’ve also accepted that loving Anne requires a boat-load of perseverance. Thankfully, Anne continues to make progress, but it is oh. so. slow. The amount of patience required to persevere with therapy and school work seems impossibly infinite. I fall so short of what Anne needs. My inadequacy keeps me tethered to God.

Bottomline: I need to live a life characterized by ENDURANCE.

I know a little bit about endurance from my running. I’m a very slow runner, but I can run a long way :) When I run a longer race – I LOVE the water stations. I always walk through them – savoring every drop of that icy liquid – and when I come to the end, I throw my cup down and start running (slowly) toward the next break.

We all need breaks. The difficulty with life with a disability (or for me as the caretaker) is that there really are no breaks. Everyday is a fight – a fight to carry out normal life…toileting, bathing, grooming, eating – so we have to look for respite in different ways.

I’m still figuring this out. I need to learn how to give myself a break without checking out of life and then resenting the gift of caring for Anne. And I think Anne needs breaks too.

Hmmmm…. I’m going to start thinking more deeply about this idea of living with endurance. I’ll let you know if I figure anything out ;)

*I stole the idea for today’s title from my friend, Josh…