Preparing for school

Our summer is winding down. Anne goes back to school next Wednesday (8/7)!

Anne responded so well to serial casting that she only had to have three weeks of casts instead of six, so she will be able to go to school cast-free (serial casting is a technique that increases the range of motion in Anne’s ankle).

This is the first summer that Anne seems brighter and sharper at the end compared to the beginning. Her amazing use of language keeps us in stitches. She uses her words in such a clever and witty way.

The other day, Kate was working through a book of riddles, and Anne was able to figure out riddles which stumped Kate. Anne has excellent reasoning ability. She’s still so smart.

Her challenges are her short attention span, impulsivity and cortical visual impairment (CVI). (CVI is a broad term for visual impairment caused by a problem with the brain, rather than with the eyes.) These are all huge obstacles which Anne must overcome in order to read.

Fluent Reading and Fluid Walking. These are our two dream goals for Anne. These goals are so long-term, I feel like there are a hundred short-term goals to be met to get there. But we’ll keep plugging along… little step by little step.

God continues to supply exactly what we need precisely when we need it. Never less, and never more. We pray for the faith to trust him in the moment and leave the future in his hands. In the meantime, God uses Anne to give us so much joy! We are so grateful for the gift of her life!!

Anne’s summer

I think this has been Anne’s best summer yet. Anne makes good progress when she’s consistently challenged, and we’ve worked hard to make sure she has lots of challenges…

TheraSuit therapy + Church camp in June. Serial casting + reading tutoring in July. And when you add in trips to the pool and Six Flags – well, we’ve been busy.

I confess, I don’t typically have the energy for this type of schedule… I’m a read-a-book-at-home kinda gal. But I think God has given me an extra boost. That said, I’m thankful we only have three weeks left before Anne starts school :)

But she’s doing well. And so are the rest of us.

Oh! And Eric’s company generously decided to cover Anne’s TheraSuit therapy – but they said this would be the last year, so we’ll have to pray about what to do next year… But for this year, she’s covered!!! Thanks for your prayers and encouragement… they are sustaining us!

Questioning, Doubting and Honesty before the Throne

I’m halfway through with my year of blogging through the bible. I’m currently in Ezekiel, and I feel WAY over my head, but somehow God manages to give me something to write about every day. I’m really experiencing God’s strength through my weakness!

Something stood out to me yesterday as I was reading Ezekiel 8-11… These are the chapters describing Ezekiel’s first temple vision. At the end of this vision, God’s glory departs from the temple because of the enormous sin of the people.

In the middle of the vision, God sends angels out to execute judgment on all but the “remnant.” The judgment was so gruesome that it caused Ezekiel to cry out…

And while they were striking, and I was left alone, I fell upon my face, and cried, “Ah, Lord God! Will you destroy all the remnant of Israel in the outpouring of your wrath on Jerusalem?” (Ezekiel 9:8)

In the face of such wrath, could Ezekiel be doubting God’s goodness? I don’t know for sure… But I do resonate with the idea of questioning God’s goodness…

Sometimes we are surrounded by such dire circumstances, that we wonder how God could allow such suffering.

I’m familiar with all the theological answers to this age-old question. I get that suffering is a result of sin and that God uses suffering to bring about repentance, faith and sanctification. If you’ve read my blog, you know that I get that. I really do.

But sometimes, like Ezekiel, we are so overwhelmed that we cry out, “Enough is enough!” And whether or not this is an appropriate response or not… it still encourages me that Ezekiel had the guts to be honest. God is big enough to handle our honesty… it’s whether we are brave enough to be honest and vulnerable before God. I believe He meets us there. And I believe He loves us there…

TheraSuit: Year 2, Day 15

Anne completed all three weeks of TheraSuit Therapy, and she did GREAT!

By Day 15, most of her screaming and temper tantrums had been replaced with laughter and determination. Her left leg is so much stronger than before. And she is soooo close to being able to stand from a sitting position all by herself. Once standing, she is maintaining her balance for much longer than before suit therapy.

The great thing about Suit Therapy is that as her muscles heal over the next month, we will see continued improvement. It is such a great program!

…If only insurance would cover it. We are still waiting on a decision from our insurance company on whether they will cover this therapy. Please pray that God would work a miracle, and somehow our insurance would cover the 3 weeks of therapy!

This is a video of Anne on the last day. She is doing single-legged squats (while being distracted by a fun game). This is the exercise that caused the loudest screaming in the first few days. She’s having a ball in this video. The improvement is remarkable :)

TheraSuit: Year 2, Day 7

It’s the 2nd week of TheraSuit therapy, and Anne is starting to feel the effects. Her muscles are tired, and she is struggling to work through the fatigue so she can get stronger.

Today, Anne was screaming… “I’m ready to go home!!! Take this stupid suit off of me!!!! I don’t like you anymore!!!”

And then in the same screaming voice she would yell, “Ok. I will work some more. I’m ready to work some more!!!!!”

And then she switched to scream, “Leave me alone. I want to go home!!!!”

And so it continued… back and forth, back and forth, until she finally finished her exercises…And then she looked at her therapist and said, “I’m sorry I was mean to you. Can we hug and be friends again?”

Sweet Anne. I pray her hard work will make her stronger in both body and spirit!

TheraSuit:Year 2, Day 2

Anne has really struggled today.

I am sitting where Anne can’t see me, but I can hear her. I know she doesn’t feel well. She woke several times last night with itchy eyes and a stuffy nose. She’s tired. But she’s persevering. Through tears she is relenting to the therapist’s commands. She’s had grit today. I’m proud of her.

I’ve been reading through Jeremiah as I write my daily bible365blog.com posts. Jeremiah complains a lot, and he has every right to! The people of Judah want to kill him because they hate his message of Judgment…but God is firm with him. In Jeremiah 15, after God rebuked Jeremiah for his complaint, God built him back up with a strong-as-rock promise:

And I will make you to this people
a fortified wall of bronze;
they will fight against you,
but they shall not prevail over you,
for I am with you
to save you and deliver you,
declares the Lord.
I will deliver you out of the hand of the wicked,
and redeem you from the grasp of the ruthless.” (Jeremiah 15:20-21).

God works this way with us. It’s very similar to Anne’s therapy. The therapists ask her to do hard tasks – for her good. She complains, and they are firm – yet encouraging. She perseveres, and consequently – she is made stronger.

May we have the courage to persevere through God’s therapeutic work with us :)

TheraSuit: Year 2, Day 1

Anne begins her 2nd round of TheraSuit Therapy today. So far, so good :)

Update and Prayer needs:
We finally have her seizures under control. She is on a different medication which seems to have very few side effects. At her current dosage, we rarely see seizures – and even when we do, they are extremely mild.

The only side effects from her seizure medication seem to be occasional intolerance for movement and increased emotional outbursts… NOT a good mix for TheraSuit therapy!

Please pray that somehow, these side effects are minimal and she would be able to grit her teeth through the discomfort and actually enjoy the process. Right now she’s screaming, but she’s working through it. We covet your prayers :)

Silly musings about flying

Sometimes I just want to fly – but I’m grounded. I’m grounded by responsibility. I’m grounded by disability. I’m grounded by lack of vision, purpose. I’m grounded by a small heart closed up in my small world of caring for my small children.

But Anne’s not small. Her heart is large. She loves. She laughs. And she longs. She’s grounded too. Yet she flies. How does she do that?

In my years of being a Christian, all I’ve ever wanted is for my life to count for something larger than myself. To multiply my small efforts and make a difference in this world. I’ve longed for purpose. I want to matter.

I look back at my life – and I’ve tried to fly. I’ve pursued things that seemed to matter. But God always pushes me back down to earth – back to my home – back to my family – back to sitting with Anne. The Anne who can’t walk – who is absolutely dependent for every significant movement. This Anne. This life. Does it matter? I think God wants to show me that it does. I think He’s trying to teach me. I think I’m a slow learner.

Somehow, I need to learn to fly while grounded. For now, I’ll ask for help to obey in the moment. And maybe one day, I’ll look back and see that each step of obedience was a slow ascent to flight. And I’ll laugh. And so will Anne. And we will fly together.

Yeah for Summer!

Ahhh… Summer. It’s been a wonderfully relaxing week – especially compared to the craziness that surrounds the last month of school.

Part of that craziness involved me dealing with medical providers and insurance to work out Anne’s therapy schedule for the summer. As is typical, God worked it all out perfectly – but just the opposite of how I had planned! God always knows best.

So Anne will do another round of TheraSuit therapy in June. And then she will have serial casting done in July & August.

Anne is doing GREAT! I don’t know how to describe her improvements… I just know she’s better. She’s less impulsive, more relaxed, less agitated, more focused. Eric and I are both extremely grateful for our Anne’s progress.

Anne’s Orthopedically Impaired Special Ed. class had an awards ceremony at the end of the year. Anne won several awards! I think she won four… “Most Improved in Writing,” “Outstanding Work in Phonics & Reading,” “Outstanding Work in Sight Word Recognition,” and the one I’m most proud of was “Most Improved Student in Primary Grades.” Woo Hoo!!! Anne had a fantastic year, and we are so proud of her!

So Sweet!

So Proud!

We love our Anne!

And the best news we received at the end of the year was that Anne’s AMAZING Para-pro will be returning next year! I’m so thankful for Mrs. Bush :)

Anne loves Mrs. Bush!

Happy Summer! I’ll post updates during TheraSuit Therapy. Thank you so much for your prayers for Anne!

The wisdom of Gandalf

Eric and I were watching The Hobbit tonight. My favorite parts of both the movies and Tolkien’s books are the scenes with the elves. The land, the respite, the wisdom, the peace. Every time the characters leave the elven city of Rivendell, I am sad. I long to stay.

Rivendell is the setting for our favorite scene from The Hobbit. Gandalf’s words resonated with both of us. I think because they echo the way of God’s Kingdom…

Sauron believes that it is only great power that can hold evil in check. But that is not what I have found. I’ve found that it’s the small things, the every day deeds of ordinary folk that keeps the darkness at bay. Simple acts of kindness and love. Why Bilbo Baggins? Perhaps it is because I’m afraid. And he gives me courage.

In many ways, Anne gives us courage. Her simple smile. Her sweet laugh and quirky wit. They keep us going. And just as Galadriel assures Gandalf… we know we are not alone. God is our helper. He is our Rescuer. He upholds our very life!

Behold, God is my helper;
the Lord is the upholder of my life (Psalm 54:4).

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