Monday, May 29, 2006

Unlike Normal Parenthood

I've spent the last twelve days trying to get my semester materials in, trying to spend some time with my family, being incredibly sick, and then trying to get my mind around the fact that Robert is going to have surgery in just a few days.

One of his hips has become displaced due, in part, to a mild scoliosis, and due, in part, to the skeletal development problems all children with mobility problems face. He has to have one of his thigh bones cut and reinserted in the socket--and one leg will be permanently shorter than the other. I don't know what will happen when a kid with neurotransmitter deficiencies, whose mobility is actually kind of fragmented, cannot use his legs for 4-6 weeks (Robert will be in a cast that long). Will he lose his stepping reflex? Will he regain even the partial muscle function he has in his legs?

It just seems like we're sailing into the complete unknown right now. If he doesn't have this operation, his scoliosis will get worse, the pain he's in right now will just get worse. If he has the operation, for all we know he could never regain even the limited use of his legs that he currently enjoys.

I used to like living with uncertainty where Robert was concerned. In the years (4-5) before we had an actual diagnosis for him, everything was speculative, and every speculation was a bad one. Uncertainty meant that everything we were told about him was an hypothesis--thus, it wasn't necessarily true. I am happy to report that many of the most dire predictions have not come true.

But even the diagnosis offers no real help, it seems. The answers are still pretty much that no one really knows.

Robert's body, though, is starting to deteriorate. Not only has the scoliosis developed and the hip problem become acute, but the hit-or-miss capacities of his compromised muscles means that his trunk is kind of thickened, and his arms and legs are pretty spindly now. In short, his body is starting to take on the look of abnormality. His pretty face still looks great, though. And his smile. But we've had our first round with pressure sores, and those will definitely be a part of his future--so the challenges keep coming, but, unlike normal parenthood, there aren't the rewards of development and positive change--there's just trying to keep deterioration, disease, and even death at bay.

Sometimes I feel sorry for myself, but mostly I worry about him: I want the quality of his life to be as good as possible, but the definition of "quality" keeps minimizing.

Not long ago, on PBS' American Experience, I think, they had a documentary on the Boy in the Bubble, who had the weird immune system disorder that would cause common viruses and bacteria to kill him. I missed the first part, but, for whatever reason, they knew this before he was born. So they had this sterile incubator to keep him in--and he lived until he was 12, I think, in this bubble-room. Then, somehow, some kind of bacteria was let in and he died. The documentary focused a lot toward the end on the ethics of having put him in an isolation chamber to begin with--in the months before he died, he was showing signs of a psychological breakdown.

Of course, some experts had the temerity to gently criticize the parents. But what exactly are you supposed to do as parents? People think, oh yes, I would refuse the bubble and just let nature take its course. But you wouldn't. You have the option of keeping your child alive. You take it. There is nothing more you can do. The one thing you can never do as an ethical parent is willingly let your child die when there is any other option.

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