This is the month many men dread, and not just because we should have gotten all our tax forms in the mail by now. No, we are all tied up in knots because we are supposed to find an original way to display our love to our wives. I have known some men who are great at this; they plan out an amazing meal and evening events that would put paid organizers to shame. Year after year, these guys think up creative and exciting ways to surprise their wives, and they make me look bad. I am so terrible at managing “special occasions” that I actually bought the same card for my wife two years in a row. That’s not a joke; I went to the store, looked through all the cards, and picked out the one I liked, which also happened to be the same one still sitting on top of our prominently displayed family piano from the year before.
As a husband and dad I don’t always get everything right, but thank God all I am doesn’t ride on that one day a year. Some years I’ve been better at this romance thing; at other times I’ve had more grace to listen to my wife and understand her. To me love has always been about more than flowers and candy: it’s displayed in the things I do, and in how I have learned to change the way I act for the sake of both my wife and children. I watch my children make mistakes I told them to avoid, but, like me, they have to learn the hard way. I have sat and listened as they felt the sting of hard lessons, and I’ve tried real hard not to break out in “I told you so!” As a dad I have had the responsibility to discipline my children. It isn’t what I’d like to do. I want to be the fun dad, the one everyone likes, but that wouldn’t be love. I have had to make tough choices for our family, not just popular ones. At times I have shown love by making sacrifices, giving up what I wanted so that my wife or children could have what they wanted or needed. I did this gladly; my family has no need to know about most of these sacrifices. I have prayed for them, that they might continue to seek after God. I have asked that they might someday find a special someone who loves them and spurs them on to be their best. I have thanked God for the one he brought me twenty four years ago who has done the same thing for me. At times, I have tried to be the husband who relieves my wife from having to be the “go to” for all things child related.
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?
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.