What's the most confusing thing about being the parent of a disabled child?

I’ve done some reading around the Internet about being the parent of a disabled child. It can be confusing. Behavior can be quite graceless.

We believe in the Grace of God; God’s unmerited favor. That’s how a good biblical, protestant, Christian believes here in America. Jesus loves me this I know, for the Bible tells me so.

Yet we work really hard to make God happy. Maybe you don’t but I do. For some reason, I believe the law of sowing and reaping has way more clout than the law of Grace.

I know. I’m not supposed to say things like that and typically I don’t – out loud. But I sure live like I believe that if I’m good then good stuff will happen to me. And if I watch your life for very long, I’d see evidence that you live the same way.

I live like I believe in karma. That won’t come out in a conversation with me about the Bible or our faith or how we come to know Jesus as Savior, but watch how I live and you’ll see me living like karma was law rather than Grace.

So when you become the parent of a disabled child, no matter what the process, you’re shocked that God would let it go down the way it does. For us, our granddaughter was abused and the state gave her to my wife and I to adopt. For others, they find out during pregnancy or at the birth of their child that the little one is disabled. You never behave better than when there’s a baby on the way. Where’s the grace in a little child being hurt or being born severely less than perfect.

Karma makes so much more sense. Somewhere along the line you were bad and this is what you deserve.

This is the context of the conversation I had with Susan the other day as we were working through some of these questions we want to air out in the book we’re working on.

Bryon: What’s the most confusing thing about being the parent of a disabled child?

Susan: I don’t think I’m confused.

Bryon: What I mean about confusing is it's, like, you're living your life and you think God's got your back and then bam you're the parent of a disabled child. You think you're doing everything right. Then God lets this happen to you.

Susan: What's the most confusing thing?

Bryon: in your Christian or you theological world. You think you're being good so good things should happen. If you do bad, then you get punished. So are you being punished for something you did?

Susan: I don't think I'm being punished for something I did bad. I think of this: all my life raising my kids, Charity and Aaron when they were little, whenever they had a pet, they would always not take care of it, and I'd have to take over. So it became a joke. “Oh, mom has to take over everything because we aren't doing our job” and I guess it feels the same way with Allie. Charity wasn't doing the job she needed to do and I had to take over and start raising my disabled granddaughter. I feel like I kind of reaped what I've sown because all my life I've done this for my kids and I'm still cleaning up their messes.

I guess I get confused sometimes because I ask why did God let this happen. But then I'm reminded I don't see the big picture. And then I think about all the lives Allie has touched.

I think of all the doctors and nurses and all the other people we've met as we take care of and love Allie. Her testimony has touched so many lives. But not knowing the big picture is still confusing to me. Because I don't know where all this is going and why. But I'm learning that you just have to press on and deal with it.

[The other day, a wonderful couple left a comments on this blog and on Facebook encouraging us to get it all out there and write this book because what we've done by adopting Allie has helped to encourage them to become foster parents and to adopt little kids being raised in marginal situations. They, too, have questions about why God would let such things happen, but even while they're asking the questions, they doing something to change a little kid's story --- thanks for the input, Ray and Nancy]

My wife is my hero.