Ah, Labor Day weekend. Time to go camping. So I hook up the trailer and start loading. Don't forget the wheelchair, and the walker so he can do some therapy. The leg braces, AFOs and special shoes. I pack the kids' bikes but skip the special bike. Don't forget to put the urinal in the truck. (It's just too hard to get him to the trailer bathroom). My family had a hard summer; we didn't do much more than trade off going to another state with my son for his surgeries (three in all). Major reconstruction of his legs was needed because of his cerebral palsy. We thought it would be fun to take at least one trip this summer. We went with friends who have six children. I watched as they all ate and dressed and trekked off to the bathroom together. And I thought, Wow! That is a lot of work. Then I thought more about it. I have three kids, one of which has special needs. Some folks look at us and say, "Wow!" I have come to realize lately that so much is relative to our situation. I sometimes feel overwhelmed by life-but so does every family. Ours is just different. While I had a hard time packing up for the weekend, others had a hard time dealing with the day's events. Does having a special-needs child make me tougher or somehow a better person? I don't think so; I think it just means I have a unique situation that requires me to do things differently than others would. I have bought things to make my life work, like a trailer and truck and wheelchairs, and even a house. We are just a family trying to make it though life and, hopefully, have a little fun along the way. By the way . . . we had a great weekend.

Over the years I have written everything from the perspective of a parent. Since I am the parent of a child with cerebral palsy, I suppose this is natural. With the numbers of people who have told me horror stories of what churches have said to them, things like “please don’t bring your child back,” I have been critical of “houses of God” in regard to how they treat God’s people. Don’t get me wrong, I love the church, and when my own church didn’t have a special needs program I started one. My goal is to enable all those whom God is calling to have a place to worship.

I don’t think I would say I am critical of the church. I come at it more as a misunderstanding. I believe that if God’s people understand the issues, most churches want to do what is right, including everyone in the service and Sunday school program regardless of disability.

I recently spoke with a pastor who has put their disability program, which had been running for over 25 years, on hold while they figure out what they want to do. His thoughts were that they needed to stop and pray about what God would have them do. While I offered to help them in any way I could, and would gladly work with them to build a business plan and mission statement, the situation made me think about my expectations. What should I, as a parent expect from the church?

From a parents’ perspective, I have a Master’s degree in my kid. Our children are enrolled in the local school or I have moved them out because of problems, and while I might be happy at the moment, I might also be trying to get the services I think my child needs to be as successful as he or she can be. My whole life can be wrapped up in goal setting. I set goals with the school, the therapists, maybe even at home in an attempt to reach my child’s “full potential. ” I know this is important for each family out there, but should a church be expected to work in the same way? What is realistic to expect? I’m not letting the church off the hook, but when I say every church should have a special needs program, what exactly am I expecting?

In his book The Problem of Pain C.S. Lewis raises an issue that I have wrestled with for years. If the guiding principle of life is survival of the fittest, as the Darwinists claim, then disabilities are natural. They happen, and in a purely natural setting they are weeded out as part of the gradual evolution of a species. As cruel as it sounds, this combination of randomness and natural selection is a completely consistent explanation for disability, given an atheistic worldview. If we believe in an all-powerful God who holds the world in his hands, however, disabilities pose a real problem. How can we square our theology with the suffering of our kids? How can there be both a God who loves and cares for us and innocent babies born with disabilities? I'm no theologian. I haven't had hours and hours to ponder and pray over this. I have not dwelt on it constantly, but the question has always been with me. Most of the time it has occupied the space in my mind clearly marked "don't understand." Twenty-one years ago my son was born. Why he came early, the doctors couldn’t tell us. No great insight came to me, or has come to me since as to why it happened. With such a huge question in my life unanswered, and faced, of course, with other questions as well, sometimes I had to wonder. How is it I believe in God? I was asked this by a parent, how is it after all these things have happened to me, I have faith? My answer is more along the lines of an explanation of what I believe faith is. I think at times I have expected faith to be like a light-switch with only two positions, on or off. Early in my life I believed that because I had doubts and questions I could not possibly be a believer. But eventually I was faced with a fact. No matter how far I had wandered away from God, he was still there. I was not going to church or following Him, and yet, when faced with questions, again and again I chose to ask him why. The light switch was never off; it was a dimmer switch on very, very low. I was mad at God, yet I smiled at the beauty He created. I even prayed for clarity. It wasn’t that I had no faith; I simply refused to acknowledge that I relied on him all the time. The choice I had to make was a choice to stop running away, to talk directly to Him and admit that I didn’t get life.

When my kid was about three and still unable to walk my grandmother told me a story of when my cousin was about two years old and wasn't walking yet, they rubbed egg whites on her legs and she started walking. Well I didn't take that very well. If I remember right, I unloaded on her telling her that egg whites were not going to make my child with cerebral palsy walk. I probably should have been nicer to my grandmother because she's from Guatemala and this was her way of trying to help. But it got me thinking of all the miracle cures and slick brochures telling me how they are going to cure my child. What angers me the most is the fact that these so called cures are taking advantage of what is basic to all parents; the fact that we want the best for our child. Of course we hope and pray for that miracle. And I can't say for sure that all of the multi-level marketing claims are false, but I hate the fact that I can't be sure. And as a parent of a special needs child who has enough medical expenses already, I can't afford to try them all. Why they take advantage of those already vulnerable I can't imagine. I don't understand why the medical establishment can't be quicker to check out their claims. But one thing I do know. Somebody's getting rich, and it "ain't" the special needs parents.