When Ben was little we were never sure what his needs would be as he got older. We hoped that he would begin to talk and walk. With such a vague diagnosis, we never knew how Ben's development would progress. The idea of needing to change our home to meet Ben's needs was a fleeting thought. If Ben does not walk, was not something we spent a lot of time contemplating. Avoiding this thought was easier.
Even if Ben did not walk, the future seemed a long way off.
Ben is seven now and the unknown future is here and more apparent.
The physical and financial problems will be major issues for us. When will we make these changes? How will we cope with these changes? Where do we add a ramp? How do we enlarge the bathroom to fit an adaptive toilet? Will our car need to be retrofitted for a wheelchair? How do we pay for it? As difficult as these decisions and financial problems will be, dealing with the emotional issues associated with these changes will be most challenging.
It means some of the hopes and dreams we had for Ben may not come to fruition. We are saying good-bye to some of the dreams we had for Ben walking on his own. We have not given up on the possibility of Ben walking, but the realities of a 43lb child being moved up and down stairs, lifted into the car or using a baby toilet for much longer are hitting us hard. I see that he will only get heavier and taller. I do not see some of those things changing. Even if Ben does walk on his own, his endurance will most likely be low.
My other fear is that as we rely on a wheelchair, Ben will get less practice in a walker and be less independent. Will we be giving up on him?
These are hard decisions and they require a lot of thought. I think I have been sad for awhile thinking about all of this. My sister asked a practical, seemingly benign question this summer while walking with Ben one afternoon, she said, "What are you going to do when he gets bigger?" She did not mean anything by it, but it struck a chord with me. I have thought about her question countless times.
What are we going to do? It scares me. Instead of putting my head in the sand, I will start looking into resources, funding sources and possibilities. Better to be prepared for what lies ahead.