September 2013’s prayer requests:
Please pray for Anne…
Thank you so much! Your continued prayer and support after all these years is an inspiration to our family!
My friend, Josh, wrote a post on his blog that literally changed my life. His post: “An Open Letter to You from the Rest of World” is what inspired me to blog through the Bible in a year (and not quit in January)!
So now, he’s sponsoring a contest to encourage people to respond to his inspirational “Letter from the Rest of the World.” So I figured I’d give it a go… especially since I struggle daily with the tension between working to achieve my dreams and my home-bound responsibilities to care for Anne (my disabled daughter).
As I live in this constant tension, I’ve come to the realization that the best way to make an impact for good is not necessarily to write the next NY Times bestseller, but to surrender to the servant’s call of caring for Anne.
So here’s my response to “the rest of the world.” Let me know what you think!
Hi world!
It’s me…that skinny, freckle-faced girl with red hair and glasses. Yep… just me :)
Supposedly, I have something to offer you, but I feel much too small to offer your big-ole-self anything of significance…
You see, I spend my days taking care of my daughter who has a severe brain injury. What could I possibly offer you?
Every morning, as I walk into her room, she looks at me and asks, “Where are we going today, Mama?” And I say, “We are going to school,” but I think, “She wants me to show her the world.”
Then I carry her to the bathroom, and she sits and I sit, and we wait for her broken body to do what it has to do. And we wait, and she asks, “What are we doing today, Mama?” And I say, “Today’s a therapy day,” but I think, “We are going to persevere and never give up.”
And then I dress her and brush her teeth and put on her braces that straighten her crooked feet – so that she can stand. And as she stands, she stretches and lifts her one good hand to the sky – as if she might really touch it. And she looks up at me, and she smiles.
You might consider her lowly, broken and burdensome. But everyday I watch her bring light, beauty and grace to others.
Somehow she is able to fly in her brokenness. She not only flies, she soars, and she brings me along with her. She helps me laugh. She helps me love.
So this is what I offer to you, world…
Joy in the midst of hardship…
Rest in the midst of chaos,
And a Brokenness that breeds Strength.
I also offer you my disabled daughter, because she is priceless. I get to take care of her. And I am so grateful.
So if you happen to see us out and about, be sure to say, “Hi,” because my little girl gives the best hugs!
With Sincerity and Gratitude,
Me
August 2013’s prayer requests:
Please pray for Anne…
Thank you so much! Your continued prayer and support after all these years is an inspiration to our family!
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!!
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!
July 2013’s prayer requests:
Please pray for Anne…
Thank you!
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 :)
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!
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 :)
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 :)
Crayons In My Water 