"Struggling" to Visit Northern Michigan

The kids and I spent a great few days in Michigan last week. Part of the time we went to Grand Rapids to visit family, and during that visit spent some time at the Frederick Meijer Gardens. This is a great family spot to visit and is completely wheelchair accessible --even all of "Tree House Village"!

Something funny happened on the way out of the Gardens, though, and it reminded me how so many people view our family. A very well meaning man walked up to us. He had his infant son with him and he approached me as I was placing Nappy's chair in the back of the van.

"Excuse me," he said, hesitantly, obviously nervous, "I just wanted... to take a minute and talk to you. God told me to."

I was a bit perplexed by his statement, because I communicate with God fairly frequently, and God hadn't mentioned word one about this guy to me. I pointed out to God that it would be nice if He would let me in on these things. It's like I'm always last to know. I smiled at the guy, thinking that he might be planning to ask me about adoption. At least I was hoping he was ,because I'm always prepared to give my "Millions of Children Need Families, Yes That Would be Great if You Adopt" Sermon.

"I wanted to ask you about your daughter.... I.... is there something I can pray for? What's her ailment?"

Ailment? I thought. Was she coughing and I didn't notice? Oh no, she was sick again and I just didn't pick up on it because she never acts sick! How embarrassing!

"Is she in pain?" He continued.

"Pain?" I asked. "No, she's not in pain."

Then I realized that this was about the wheelchair, so I responded, hoping to stop the questions. I toyed with claiming she had Fetal Alcohol Syndrome and that I'm still despondent over my poor choices during pregnancy, but thought better about that.

"She just has arthrogryposis and can't walk."

"Is she terminal?"

Aren't we all? I thought, but decided not to say so I wouldn't burst his bubble. Maybe that hadn't occurred to him yet.

"Uhhh... no more than anyone else."

"Well, I just really feel like God wanted me to talk to you and let you know that she can have his blessings and healing and that she is very valuable to him. And I would really like to pray for her."

So, figuring that we can always use more prayer, I told him he was welcome to offer to pray for her and asked Nappy if he could. She looked at him, stuck her lip out and said, "NO!" (I don't think that this guy really knew what parts of her need prayer.)

So, he talked to her instead, and said, "Well, I just want you to know that God loves you. I saw you struggling this morning and I know that sometimes life can seem really hard...."

Struggling? Life can seem hard? What in the world was this guy talking about? She wasn't struggling (okay maybe a bit because we kept dumping our coats and stuff on the back of her wheelchair and making it really heavy for her to wheel, but we also pushed her alot too!).

It struck me as so odd. How could this man possibly see struggling when all I see is victory? Here is a little girl who only a year ago spent most of her day sitting and watching other kids play, unable to get herself around much, and who had absolutely no future. Now she's wheeling everywhere, trying to walk, climbing all over the place and enjoying her ability to explore the world! Here she is talking up a storm, learning her letters and counting, making jokes, and constantly pretending to be a princess or a puppy or even a duck! How could anyone look at such an animated face and think she was "struggling?"

The next day I told my friend, who has happened to live her entire life without legs, that maybe God did tell that guy to come up to us. Maybe I dropped the ball because I was supposed to explain to him that life with a disability isn't a struggle, but it's actually a celebration of one victory after another as you see God redeeming things you never thought could be redeemed and you get pictures of beauty that most of humanity will never glimpse.

She assured me that there was probably nothing I could've said that would have gotten through to that guy. As she pointed out, the burden was his, not God's. So, I guess a gracious quiet was the best response.

"Sometimes rather than healing you, God chooses to inhabit you," She said. Beautiful truth from a truly beautiful person in whom the spirit of God obviously dwells.

You have to really desire to understand the heart of God to understand which is so much much better.

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.