Wednesday, March 12, 2008

Arthrogryposis: A Great Opportunity?


Our youngest daughter has a physical disability called arthrogryposis. In lay terms, it means that she has joints that are locked. Arthrogryposis is merely a catch-all term for about 250 conditions that can lock joints. In her case, it is assumed, that there was not enough space or amniotic fluid in the womb for the fetal movement necessary for her joints to develop mobility. The truth is, we'll never know for sure. Arthrgryposis can be so bad that it effects every joint, even the jaw and spine, but in her case it presented in her feet, ankles, knees, hips, wrists, elbows and shoulders.

In some of those joints she has some mobility -- like her hips and her shoulders and one wrist. And some of the joints, like the elbows, she can move a bit by pressing her arm on something and forcing it. She just can't move it on her own. Because, oddly enough, while it is a joint disorder, at it's heart, it's a muscle disorder. Those muscles never developed so they can't move the joints. Then the joints locked into position. As a result, she also has parts of her body that are weak.

The biggest impact this has, of course, is her inability to walk. While we're praying and trying everything we can to help her walk, the odds are she never will. And, even if she does, she'll still be relying on wheelchairs as a main mode of mobility. I struggle with this much more than she at this point. She, for the most part, is a happy kid who thinks arthrgryposis (or art -o-pote as she calls it) is just a part of life.

The worst, for me, is when I start thinking too far ahead. Instead of trusting God in the now, I worry about her future. The other night, I thought about teaching her to drive.

We're going to have to get her an adapted van in order for her to drive. How will we pay for that? How will she her whole life? Maybe we should just move back into the city limits then she'd have better access to the bus system. I thought, as I laid there trying to fall asleep. Ugghh, public transportation is such a mess in this country! It will never work. Maybe I need to try to get a master's degree in city planning and then I can work at getting a decent public transportation system set up.... and so it continues until I fall asleep into a land of nightmares and worries.

Incidentally, she had a nightmare the same night too. Someone stole a lollipop from her and then made her take a nap. Obviously, the bigger picture is still lost on her. I'm really thankful it is. I'm glad she doesn't worry. I would rather she see her inability to walk as just a bump in the road. In fact, I make it a point she never see me worry.

Then I saw an interview with the most amazing teenager I think I've ever seen. Aaron Fotheringham, who has spina bifida, was the first person to ever do a back flip in a wheelchair. A year or so ago, I saw the back flip on You Tube. I was impressed (and also thought I really didn't want my daughter to see it because I really don't want her to want to do a backflip in a wheelchair -- those little rods at the back are there too keep her from doing a back flip!). However, in an interview with ESPN, Aaron talks about this new sport he's invented called "Hard Core Sitting".

During the interview his father talks about a time Aaron, just out of the blue, told him, "Dad, you know I'm really kind of glad that I can't walk."

As we watched this, my youngest son said, "I just don't understand why people think you have to walk. You can do so much without walking. It's not like it's a big deal."

Big words for a person who can walk. However, I know what was in his 10-year-old heart. He sees all that his sister does, and he understands that life is much bigger than any disability. In the scheme of eternity it's just not a big deal. He has a unique perspective that he never would've gotten if we hadn't adopted physically handicapped children. It's one of the blessings of following God.

I know that, too, but then why is it such a big deal to me? Because my little girl has lost something that, in general, we see as something everyone should be entitled too. If she had been born into a creation that hadn't been corrupted by the effects of sin, she most certainly would've been entitled to the right to walk. Life just isn't fair, and that reality is painful.

His dad goes on to talk about how he used to sure that there would be a time Aaron would have to "face his handicap, when he would have to deal with 'I can't walk',' But according to his dad, after all these year of it never holding him back, he doesn't "think he's ever needed to."

And, that reality is freeing! While I can't deny the pain and grief involved in her inability to walk, I can't deny the joy there is in seeing how God can redeem it all. I can't deny the wonder of how amazing God is that he can take a situation so grim, give hope and redeem it into something so incredibly amazing like Aaron Fotheringham. I can't deny the joy when my daughter tells a doctor, "It's okay I can't walk. I'll walk in heaven." I can't deny the beauty of my girls' faith that isn't encumbered by their limitations, but actually flourishes because of them.

The interviewer asked Aaron, "How would you define Spina Bifida?"

His answer was, "A great opportunity."

So, while I can't deny my grief, I won't deny that, truly, he's right. Not just spina bifida, but also Arthrogryposis is a great opportunity. It's an opportunity to see how God will reveal his glory in our daughter's life. It's a great opportunity for us to grow in faith and trust him to provide all that we need and she needs. It's a great opportunity to watch her rise so far above the constraints of her disability and amaze people (just like our oldest daughter). It's a great opportunity to put our faith into practice on a daily basis, and trust in the goodness of God.

7 comments:

Beverly said...

Hi! Are you on our amcsupport.org site?

My daughter is almost 4 with AMC.

Deb said...

Hi Beverly,

I've checked it out, and even signed up for chatting and whatnot, but have never been able to get past the home page. I tried emailing the webmaster, but never heard back.

Could you help me? I'd love to be able to really be a part of it.

MarlaQuack said...

Deb,

What a beautiful post. When I was pregnant with Sp the Doctor asked me what I would do if there was something wrong with the baby. I looked at her and said "there is something wrong with all of us, its just about how you deal with it."

Jessilyn said...

That was a very inspirational post :) My son is 11 months w/ AMC.

Donna said...

Hi! My daughter has arthrogryposis and developmental delays.
Were you ever able to get on AMC Support?
Nice to "meet" you!
:) Donna Murray

Suzanne said...

Beautifully written! I have two little ones with AMC and that hit home!

Claire said...

Hi I hope you don't mind but i just found your blog and just had to comment. I have Arthrogryposis and when i was born the doctors told my parents that i would never walk. Now i am 27 married and walk very well! The hard work and commitment of my mother for doing my physio when i was tiny and her insisting and helping me do it as i got older and even now as it is an on going thing is what i have to thank for being able to do what i do! So always keep at it you will be amazed at what your daughter will acheive! :o)