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Coming to terms with normality

Yesterday, while walking to my place of work (aka Starbucks in Okamoto) I saw a group of three Down Syndrome children in school uniform with their carers, waiting at the JR station. They were about 12 years old, and they seemed to be quite happy and—as we say in British English—'relatively together.' (It has not occurred to me before what a strange expression this is). It should have been a hopeful scene: instead, tears welled up; I had to turn away.

Sometimes, realization does not so much dawn, as poke you in the eye. After nearly eight months, I believed until that moment that I had accepted Justin's condition, and moved on to work through a present and a future quite different from the one we had imagined before his birth. This belief was encouraged by the excellent physical progress he is making—he is only a month or so behind his typically-developing peers—and by his evident happiness and contentment: he really is a wonderful baby, and I love him quite as much as I do my other children.

At this point, I'm supposed to say "I wouldn't change him for the world." I know that this line is expected because it crops up so often in blog posts from parents of DS children, as well as in this booklet, which some friends in Sheffield very kindly sent to us, as a help and comfort. Though the booklet is both helpful and comforting, I can't write these words as it would be dishonest. (This blog may not contain the whole truth, but there is not a word of a lie in it.) For the truth is, if I could, I would change him, I would remove his disability, I would give him all the same life chances that Sean and Julian enjoy. Whatever they make of those chances is beyond my control—I can't even get them to brush their teeth in the mornings—but at least they have choices to make. It is not because I love him less that I would change him, nor would I love him more if by a genetic miracle that third chromosome were deleted from every cell in his body. It is because I love him as much as I do that I would give the world to alter his genetic code, so that in 10 years' time, he can stand at the same JR station, and decide for himself whether to take the train to Sannomiya, or Osaka, or to turn around and walk into Starbucks for a Mocha Frappuccino. So that when he is 10, like Sean, he can understand and share the joke of the bizarrely named ACID MILK delivery truck—we think they're a courier service—that we see on the way to the supermarket. So that he can say "on the other hand...", and comprehend the vital importance of perspective-taking. (I know there are many more typical human beings that appear to lack this capacity, not just among our political leaders.)

But the fact that I would change him 'for the world' means, I suppose, that I haven't come to terms with his—our—situation. Perhaps, as I joked in the last Inishmacsaint post, I really am "a deeply superficial person". Whatever the truth of this may be, it's clear there's a gulf between the external notion of habitual, usual and the internal concept normal that I have yet to bridge. That's the trouble with being an idealist, I guess.
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