by Sue Boardman
In approximate chronological order, I am a woman, a mom, a nurse, a wife, a minister in the Presbyterian Church (USA), a counselor, a patient and, most recently and delightfully, a grandmother. It was intriguing to me that I had to move backwards, through all those layers of learning, rather like an archeologist might, to find the beginnings of my perspective on why children have disabilities. I think it began with a game.
You see, during all of my middle and high school years, I was sheltered and nurtured and challenged in a summer camp program. Funded by the Florida Association of Garden Clubs, it was run and staffed largely by a Presbyterian elder and a tribe of Presbyterian youth. We swam and canoed and sang Kum ba Yah, which, for the uninitiated means “Come by Here” around the campfire. There was a strong ecological emphasis in the program and it was there that I first learned to recycle and pick the litter out of the dustpan when it was our turn to sweep after dinner, that the actual dirt might be returned out doors. (I’m pretty sure it all got tracked back in the next day, but we were trying and this was the late 1960s!)
Every week, with each group of kids, we played the spider web game. Campers were each given a note card on which was written some participant in the local ecosystem, which, as I recall, was a long leaf pine and turkey oak community. The kids sat in a huge circle and tossed an enormous, grubby ball of string back and forth until each kid was holding a piece and it really did look like the world’s largest spider web. The task was to tell, each in turn, how the name written on your card was dependent on the name on the card the kid was holding at the other end of the string. You know the deal. How does the leaf depend on the rain? How does the ant depend on the camper? How does the sun depend on the ant?
You guessed it. It gets harder!
I think that’s when I first began to grasp just how dependent we all are on what I would claim is a divinely created system in which we are at the same time tremendously powerful and tremendously vulnerable.
These days there’s a fair amount of moderately out of date nursing knowledge stacked on top of that game. And a truckload of Greek and Hebrew and the elusive thing called theology. There’s some handy stuff known as hypnosis, some more current, or perhaps ancient, medical perspectives and an increasing stash of skill with soup stock and quilting and organic gardening.
You might say that I spend my days engaged in a lot of things I just don’t understand. Perhaps that’s why one of the names for God is mystery. There are probably a fair number of things I’ve gotten wrong and a lot more things for me to learn, especially on that day when I will see, as the apostle Paul would say, “face to face.” I just don’t believe that God gives babies disabilities. Or special needs. I don’t believe that God sends children with disabilities to specific parents to punish them or teach them a lesson or even because they’re somehow more likely to survive the experience. Kids are born with disabilities because sometimes the genetics go awry. They are born with disabilities because of tragic birth injuries, or environmental toxins, or side effects of medication. Sometimes they develop disabilities for many of the same reasons.
I do believe, with the Lutheran scholar, Terence Fretheim, that God suffers with us when our children are born with special needs. I believe God weeps over the world created good and the mess we’ve made out of it by our attempts to own and harness andcontrol whatever happens to be at the end of our particular string because it’s all connected and it all matters.
I also believe that God’s will is always for healing and for wholeness. And that the spark of God’s spirit in each of us sometimes flourishes and blooms and effects the world around it in ways we might never have imagined, given our usual notions of able or disabled.
As I write these words, literally, BP is announcing that oil is no longer spilling into the Gulf of Mexico but they don’t know if the cap will hold. It will be generations before the full impact of the spill is known. Some of them will clearly be children with more challenges than God would ever hope. And not all of those children will be pelicans or sea turtles.
Our job is to go on working for healing and wholeness right along with God. And to know that there is no place that God will not go with us.
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