Manifest Abilities

While I was pregnant, it seemed the whole world was pregnant and that everywhere I looked I spied pregnant women. Now that my severely disabled son is living in a children’s facility instead of at home, I see disabled children everywhere with their families. This morning, a father rode a modified bicycle with his very disabled son in a bike seat on the front of the bike. The boy was extremely thin and looked to be about ten-years-old with obvious leg muscle atrophy, and he wore a helmet, sunglasses, and appropriate bike attire. They stopped next to me at a red light, and the father gave his son a drink from one of the water bottles fastened to the frame. I almost cried, almost…

There was an obvious autistic boy at Target along with a baby with a shape forming helmet on its head. There was a girl in a wheelchair out for a walk with her family. I see the disabled everywhere, everyday, and I am affected. I have strong conflicted feelings.

“A man must not deny his manifest abilities, for that is to evade his obligations.” -William Feather

I worry that I am evading my obligations having my son cared for by others. It turns out that I still must manage his life a great deal as far as his schooling and medical cares are handled, but I don’t literally take care of my son anymore. I visit and hold him. I bring him home for a day and let him relax, but I don’t feed, change, bathe, clothe, and medicate him very often anymore.

For those of you that have placed your child out of home, you understand my feelings. For those of you who fear you may be in my shoes some day, I feel for you. Nothing is better, but then it is not worse, either. The impossible life of caring for my son has been replaced with the impossible life of letting others, who can be inept frequently, care for my son. My son is becoming institutionalized. And this is impossible to accept, and yet I am right now.

My son is developing kyphosis, a curvature of his spine, but it is not a problem as of yet. In talking with the physiatrist who comes to the facility regularly to see many of the children, she told me it wasn’t bad at all compared to most of the kids she sees here, and she meant the kids in the two facilities on the campus. My son’s care is being viewed as being one who lives at the facility… another aspect of institutionalization. If I had been a parent bringing my son to her office, my son would not have been compared to the other children at the intermediate nursing and sub-acute facilities she was visiting that day. His diagnosis and treatment would be viewed differently, I believe, and this troubles me along with all the other aspects of having my son live outside my home in a facility.

My son has seizures at least every couple of days at home, and the facility has not witnessed any seizures in the entire month he has lived there. Unless a magic mind fairy came down and anointed my son with special seizure stopping abilities, he is having seizures that are either not being recognized or not seen by the facility staff. I don’t know how to feel about this knowledge. It’s good they are not seeing any bad seizure problems. It’s the most deplorable thing that the staff is not comforting my son as he has an uncomfortable seizure which usually occurs around the sleep cycle.

My identity is evolving, and I know this because I feel different when I see disabled children out with their families. “That used to be me,” I think. Now I’m the mother of a child that lives in a children’s facility who can’t quite come to terms with it yet. I hate it, but my son is doing alright. I am trying to make it work, but I am not sure if it is. I am sad but remain hopeful. That’s the best that I can do.