Wednesday, November 29, 2006

"I'm not a saint, just a parent."

Times Online
The human imagination can do many extraordinary things. But we can't imagine love.

I remember my own perplexity at why people would like to work with folks with developmental disabilities. And it was because I couldn't imagine the love. And I can't convey it to anybody else. If you haven't lived it, you don't get it.
I couldn't imagine what it was like to live with a child who had Down's syndrome. I could imagine only the dramatic bits: the difficulties, the people in public places turning away in shock and distaste, the awfulness of a child who couldn't say his own name.

I could speculate on the horrors of living with a child who could not do a thousand things. I could create a dramatic picture of life with a monster. But I could not imagine what it was like to live with Eddie.


At the hospital, when they discovered on the scan that Down's syndrome was a possibility, they very kindly offered to kill him for us. They needn't have bothered. My wife is, unlike myself, an exceptional person in the field of loving and caring. .... The idea of not caring for something in your care is an abomination to her. The idea of not caring for her own child was impossible to contemplate.


Had life turned out differently, had I been married to another, had that woman preferred to go the way of amniocentesis and termination, I have no doubt that I would have gone along with that, too, and treated parents of Down's syndrome children with a lofty pity.

But, thank God, I did not marry someone else. And that left me with a straightforward choice. I could either say that Eddie wasn’t part of the deal and bugger off, or I could keep on keepin' on with the humdrum routines of life and hope that this would be enough for the arrival into our lives of this unimaginable creature we already knew as Edmund, or Eddie.


Is Eddie's slow but continuous education frustrating? Not at all. Progress of any kind is enthralling. It's not about a child passing an exam, it’s about a child growing into himself — and for every parent that is a great and glorious thing.


I don’t have a child with Down's syndrome: I am Eddie's father. There is a huge difference between the two things. The first is almost impossible to deal with, the second is the way I live from day to day. I don’t even think about it much.


You don't go into parenthood to make sure that the benefits outweigh the deficits: you go into it out of -- brace yourself but no other word will do -- love.

There it is again. The "L" word.
Would I want Eddie changed? It's a silly question but it gets to the heart of the matter. Of course you'd want certain physical things changed: the narrow tubes that lead to breathing problems, for example. But that's not the same as "changed", is it? If you are a parent, would you like the essential nature of your child changed? If you were told that pressing a button would turn him into an infant Mozart or Einstein or van Gogh, would you press it? Or would you refuse because you love the person who is there and real, not some hypothetical other?

I remember the mind-shattering epiphany, when it suddenly struck me that there was nothing, absolutely nothing "wrong" with M. He wasn't broken. He was a sound, whole, magnificent human being just as he was. Not just despite the "retardation." Take that out of the picture, and he wouldn't have been M. Who was fine just the way he was.
The never-disputed terribleness of Down's syndrome is used as one of the great justifications for abortion: abortion has to exist so that we don't people the world with monsters. I am not here to talk about abortion -- but I am here to tell you that Down's syndrome is not an insupportable horror .... I’ll go further: human beings are not better off without Down's syndrome.

A chance gathering in my kitchen: three people. My wife, who has some gypsy blood. Eddie. A friend who is Jewish. And the realisation that, under Hitler, all three would have been bound for the ovens. Down's syndrome, any more than Jewishness or gipsyhood, is not something that needs to be wiped out for the good of humanity. Down's syndrome is not the end of the world. In fact, for me it was the beginning of one.

I am not here to make judgments on those who have gone for termination, being unwilling to cope with something that they could not imagine. I am here to tell everybody that Eddie is my son and he’s great.

I have a life that a lot of people envy. .... I live in a nice house in the country, I keep five horses and as a family we are comfortably off. For all these things people envy me. But I have a child with Down's syndrome and for that, people pity me. And I am here to say: wrong. Wrong, wrong, wrong. I am not to be pitied but to be envied.

HT: Mary Meets Dolly

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