I recently ran into an ex-neighbor at the gym when I was with my brother working out. Like me, she is the younger sibling of a man with a mental disability. They are closer in age than my brother and I are but have a completely different relationship. Their mother died and their father remarried very quickly after the death. As a result, the young man, who is now my age suffered from this life transition. His mother was always the one who wanted him to get the care and attention he needed. He was a fully functioning down syndrome person who was in special education classes and working on any other issues he had. After the unexpected death of his mother, K was put on many different medications and lost the support system he needed to survive. After running into his sister, J, she told me how well he was doing working at a place called Ryan’s House–which is basically a workshop for low functioning handicapped people. This is not the place that K was meant to end up. He now spends his days doing odds and ends type jobs when he could be at least holding down some sort of full time work perhaps stocking shelves at a local grocery store. I still see K at bowling when my brother goes and the deterioration of his mental state is astounding! You can barely understand what he says when he speaks to you.

It is this interaction that really got me scared about my own brother and what the future has in store for him. Ideally my brother should be able to live in a group home setting with perhaps a house parent but with group homes in such high demand it is nearly impossible to get him in to one let alone a good one. It’s scary to think how one occurrence in a life can change the whole course of someone else’s life. It’s weird to think that one day my parents will not be around to take care of my brother and I and his needs will be left to me. I will be the one who is left to fight for his SSI money and the septa workings about getting his van to pick him up and drop him off. I will need to make sure that he has activities to go to and that he gets there. I am responsible for making sure that my brother has the best life he could possibly have and for as long as he can possibly have it for.

In the end–this will probably be the scariest thing I will ever face in my life. I don’t know if I’m ready for it.

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