disability

Still… Relentless

For Thanksgiving, I wanted to bring back a post I wrote a year ago…  about the relentlessness of disability. Out of all I’ve written in these last 19+ months… this is one of my favorites. Thankfully, Anne has improved in the last year, but the heart of this post – both my own desperate heart and God’s ever-faithful heart – are still the same. Thank you for praying for us so faithfully! And Happy Thanksgiving!!!!

November 23, 2010
I’ve been a bit discouraged lately about something (that will probably sound strange) …Anne’s feet. I’ve always taken feet for granted. I find myself watching people’s feet now – how without even thinking about it, people can place their feet flat on the floor – without their ankles rolling or without going up on their tiptoes. I watch Kate jump – and I’m just amazed at the complexity of the brain – working the muscles and controlling the balance just so – to actually jump and land – solidly on flat feet.

Anne’s feet are always pointed in and down. She can’t stand without braces to hold her feet at a 90 degree angle and to keep her ankles from rolling. It takes a minimum of 10 minutes for me to stretch her feet to fit in her braces. I can’t just get Anne out of bed and stand her up – no, I have to carry her everywhere until I have the space in my day to stretch her feet out.

Why do I mention this? Well… Anne’s feet represent to me the relentlessness* of disability. It never ends. It’s constant and always with you.

As I was complaining about Anne’s feet to her (awesome) PT this morning, she gently reminded me to be thankful for Anne’s feet… “They’ve improved, Kathryn.” She’s right. I should be thankful :-)

But here’s what I’m really thankful for. I’m thankful that I have to care for a child with a disability. I’m thankful for the relentlessness of it – because it is a physical manifestation* of who I am and who I have always been – completely dependent on God.

Before the accident, I could deceive myself and live as though I didn’t need God – live as if I were not broken and completely dependent on God. We are ALL broken and in need of a saviour, but it’s so easy to live independently of God.

Grieving and caring for Anne is so challenging that rarely am I not aware of my need for Him. And you know what is amazing? Yes, Anne’s needs are relentless – they are always there, but God is more relentless. He pursues me. He comforts me. He comforts Anne. He gives us strength, joy and perseverance. He helps us stay in the moment and not be overwhelmed by the future. HE IS OUR EVERPRESENT HELP IN THIS TIME OF TROUBLE. He is near. He is my God. That is what I am thankful for!

Happy Thanksgiving :-) -kathryn

*A few thoughts from this post came from Stephanie Hubach’s book on disability called, Same Lake, Different Boat . I borrowed the word ‘relentless’ from Stephanie’s book. I really resonated with that word… Also the idea of disability being an outward representation of our inner brokenness came from Same Lake, Different Boat . Thanks Stephanie!

Conference update

Friday night was rich. It was the first night of our denomination’s national women’s conference – entitled AmazingGrace 360. As I sat and listened to Nancy Guthrie teach, and later – as I stood and listened to Laura Story sing, I realized that I felt a connection with both of those women – even though I’ve never met them…

Nancy Guthrie has lost 2 infants to a rare genetic disorder. I can relate (on a certain level) with losing a child. I lost the Anne I had known for 5+ years the day of the accident. I still remember Anne on that morning – and all of my interaction with her… how thankful I was for her quick obedience and her joyful spirit. She was making up songs about Jesus while “cooking”  in the kitchen. That version of Anne is gone. I can relate to loss.

Laura Story’s husband survived brain cancer but he is left with disability as a result of the damage the tumor and subsequent surgeries caused. She struggles with living with and caring for someone with disability. Her words tonight… “Disability is hard.” Amen to that. I can relate :-)

Both women have suffered. Both women have wrestled with God’s love and goodness. And both women have chosen to trust Him anyway. I can relate to that :-)

 

My striving is not working.

I’ve been struggling lately to keep the pace. Sometimes I wonder if I just have unrealistic expectations of myself. On paper, my schedule seems very manageable… but then again, I’ve always struggled with discipline and consistency. sigh.

I think one of the issues is that everything feels relentless. Anne’s schedule is relentless. The morning routine of getting all the kids to school (on time) is relentless. Anne’s needs are relentless – and the afternoons filled with therapy and carpool and dinner preparation and homework and. and. and…

One of the reasons we chose to send Canon and Kate to school (instead of homeschooling them) was to give me more margin in my life. I’m supposed to have more time now. Hmm. It doesn’t feel like it.

I don’t think I’m alone in this struggle. Our culture is so “full” that most people I know are constantly trying to fight against filling their schedules. Maybe it’s just the emotional baggage of Anne’s disabilities that make me feel. so. heavy. Or maybe it’s my inability to think past today – which makes weekly meal planning challenging ;-) Or maybe I need to have a few more glasses of wine – but I don’t really like wine.

Actually, the only real answer is Jesus. He’s the simple Sunday School answer for everything – but in Him are depths of knowledge and wisdom and… joy. Joy. I think I just need an extra dose of joy. I sure ain’t finding it in all of my striving.  Jesus, will you give me joy? 

Contentment

I just got home from a beach getaway with three of my good friends (without kids!!!!) The four of us stayed up late talking and laughing… we slept in, walked on the beach, read by the pool, snoozed in our beach chairs, floated in the ocean, sat in the sand – and not once did we have to change a diaper, wipe a nose or provide a snack. It was glorious! The whole weekend I tried to rest in this gift of friendship. Finding someone you can just be with… is rare. As we were all sitting on the beach, reading our books, I was struck with such a deep sense of gratitude for the life God has given me… Anne’s brain injury and all.

I’ve been wrestling all summer with contentment, and slowly God has been chipping away at my heart to make it content. Content with my role as mother to a disabled child. Content with God’s plan to heal Anne – or not to heal Anne. Content knowing that God is sovereign, loving and good. Contentment. I breathe it in… Deep. The sounds of the ocean, the picture of my friends reading in peace, my feet buried in the sand, the knowledge that my children are safe with Eric, the seagull in the distance… all point to my Creator God. And I stay still, and breathe slow, and whisper a simple prayer, “Thank you Jesus.”

Goodness

Anne’s self awareness is continuing to improve. And as a result, I feel like she’s sad a lot…

“I’m not good at anything Mommy.”
“I’m sorry I’m such a problem, Mommy.”
“God doesn’t love me, Mommy.”

Imagine how hard it would be to see your brother and sister run, laugh and play… without you. Especially when she was literally in the middle of their play before the accident. But Canon and Kate show Anne tremendous compassion. They are the first to encourage her when she becomes discouraged, and there’s nothing more wonderful than seeing your children encourage one another!

Kate just gave a “good report” about how well Anne did at the pool today… And then Canon piped in describing how great Anne did at speech therapy. I know God is bringing good out of our story… and it is especially encouraging to see His character so evident in my children!

So thankful :-)

Source of strength

As I was climbing the stairs to bed, my mind twisted its way to worry… “O Lord, how long will I have to care for a disabled child? Her whole life? My whole life? Will there ever be a day when I can trust her to be alone – will the impulsivity ever improve… and her feet? What about her feet?” I stopped myself. And looked for comfort in truth… From Streams in the Desert (June 27):

“The Lord is my strength” (Ex 15:2) to go on. He gives me the power to walk the long, straight, and level path, even when the monotonous way has no turns or curves offering pleasant surprises and when my spirit is depressed with the terrible drudgery.

“The Lord is my strength” to sit still. And what a difficult accomplishment this is! …I feel like the mother who stands by her sick child but is powerless to heal. What a severe test! Yet to do nothing except to sit still and wait requires tremendous strength.

How many times do I turn to God and He speaks directly to my circumstance? So many times. He will supply what I need for today (period). He alone is my strength.

Goodnight.

Canon’s prayer

Just weeks after the accident, I had a hard conversation with Canon about Anne… “Anne’s brain has been hurt. We don’t know how that will affect Anne. There could be things about her that will be different.” Canon, in honorable big-brother fashion, took all this in, cried a bit and turned brave. All the time Anne was in the hospital, Canon prayed, “God, please help Anne talk and walk and run again.  But we know that none of these things matter compared to this: please let her remember her faith in you.” The first time he prayed this, I inwardly screamed, “NO! Those things DO matter. I want her to talk. I want her to walk.” And if I were honest, I wanted my Anne back more than I wanted her to “remember her faith” in God.

God has changed me. That’s the only explanation for what I’m about to write. Now – my greatest desire is for her to remember her faith in God… For her to know Him intimately, and to tell of His mighty works in her life. For her to know His love that is wider and higher and deeper than her wildest dreams. If from eternity past, God knew that Anne would have to pass through this tragedy and suffer physical and cognitive disability in order to win her heart for Himself – well so be it. We’ll walk this road and rejoice for the eternity we’ll spend made whole in heaven.

Canon doesn’t pray that prayer anymore… but I pray it for him. God let Anne know you…. and she will be healed, forever.

I’m tired.

I don’t know why I’m so tired today.  My energy level is usually pretty good (for which I’m extrememly grateful).  Usually, when I get tired I can look forward to a time of rest or relief…  BUT when caring for a disabled child, there really isn’t any rest or relief.  It’s constant; it never lets up.  To borrow a word from Stephanie Hubach…  it’s relentless.  So I get especially discouraged when I’m tired.  I guess I should turn things around in my head and thank God for the high energy level that He usually gives me.  Maybe that’s what I can look forward to – God’s perfect provision of energy for me.  And sleep tonight.  Yes, sleep sounds nice.

Jumping Right In

I think one of the unexpected benefits of maintaining Anne’s Caring Bridge site is the sense of connectedness I feel knowing that others will read and pray.  Caring for a disabled child is isolating just for the sole reason that it takes so much work and time.  It’s like being thrown back to caring for a newborn  (except multiply the doctor’s appointments 100x !)

I also enjoy writing as a means of processing the lessons God is teaching me.  Writing helps crystallize thoughts and catalyzes the hard process of moving head knowledge to the heart.

So there it is…  my twofold reason for beginning a blog: to feel connected to the outside world and to record God’s work in my life (as well as my family’s lives).  I think I’ll keep my blog private until I have my “blogging legs underneath me.”  So (hopefully) there are a few months of archives for you to enjoy (if you have the time…)

Glimmer of relief

We have struggled a little more lately with the amount of service required to raise little Anne. Sometimes we have just felt tired. We pray that Anne continues to grow and learn and sharpen because we want what is best for her. But selfishly we also ask God for some relief.

Then a tiny glimmer of relief comes in an unusual way to
me. The scene in our Honda van traveling around town: everyone singing loudly to Christian radio, with Kathryn teaching us to insert a few lyrics of our own to some well known songs. . . . Anne grinning ear to ear:

Brandon Heath’s “Wait and See”

There is hope for Anne yet
Because God won’t forget
All the plans He has for “me”
I have to wait and see …He’s not finished with Anne yet

Chris Tomlin’s “God of this city”

For greater things are yet to come,
And greater things are still to be done in our Annie-B
Greater things have yet to come
And greater things are still to be done in our Annie-B

I get a giant lump in my throat when I sing that Chris
Tomlin song with Annie-B inserted. God is so personal and close to give us these songs, to give us Kathryn who can ‘see’
to change these songs for Anne, to give little Anne back to us, and to give us the chance to wrestle with him as a family through this difficulty which molds our character a little more to His likeness.

-eric