Monday, June 29, 2009

A Life Worth Living

I can't tell you how many times someone has said to me, "I'd rather be dead than like..." someone like my son. Of course, they said this before I or they were aware of his disease, so they meant no offense (other than the offensiveness of the statement itself). By now some of those people have no doubt heard the diagnosis. I wonder if they will recall those words and feel a little flutter of shame or guilt or some unnameable emotion when we see each other again.

Some will not even remember. A few will be so embarrassed they'll probably let the acquaintance drop. It's human nature. I can see that. One maybe two will be repeating themselves on the issue, wishing death on themselves (and by logical extension on my son) and they will feel themselves very compassionate. They will, of course, be careful not to extend such brute compassion into the path of this mother. They were duly and politely informed where I stood on the issue long before it became personal.

This subject shall be taboo. Yet here I go, writing again. I'm the type to poke at a wound. I want to feel if there's fever in it. Is there something festering that needs to come out? There is so much under the surface.

I read books, the web pages, the parent forums and the fear is palpable. What if my son/daughter never becomes productive? What then? What if nothing we do ever fixes this? What will you people do to my baby after I'm gone? It's a valid fear after all: in the secular world a person's worth is measured by their utility. The Nazis' "useless eaters" idea was not a new one nor was it vanquished by their defeat.

Overall I find my reading depressing. So many of the experts and self-appointed experts are adamantly insisting on one treatment or another. The tone is so strident you can hear the underlying harmonics of "Please believe! If you believe, then I'll know I'm believing in the right thing." There is safety in numbers, after all.

But I'm not in that crowd. After my initial round of emotions I realized my autistic son was still my son with all his same traits, the lovable ones as well as the obnoxious. After all, nothing fundamentally changed with the diagnosis. What I mean is this: autism is merely a label for what we had already seen. It comes as a confirmation and revelation rather than as a thief in the night.

I can only imagine how my life would have been turned upside down if his diagnosis had been something along the lines of a terminal brain tumor. From one moment to the next, the world would have been completely different. The worst would have happened and nothing would have been the same again.

Autism? It might not be curable. It might not be pleasant all the time, but we have our boy. He's exactly who he is and exactly who we love.

And it isn't fatal. At least it isn't now: unless those with the philosophy that some lives aren't worth living get carried away again.

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  1. I believe every innocent child is precious and deserves a chance to live regardless of having a disability or not. I know when having a disability in order to compensate you will have to help him make certain adjustments during his life. I know this, only because I am blind in one eye and I had to make adjustments while growing up. I hope you find a support group that helps both you and him out. God be with you in your decision making regarding what treatment or approach is best for your son.

  2. I am in awe at your faith. You have no idea how much you are helping me. Know this. At least one candle burns brighter because of your walk.

  3. Thanks to you both. We're just working out our family's version of "normal." Every life, every day, is normal, you know? Ours is just our unique brand of normal.