Things from the article that really jumped out at me:
The human imagination can do many extraordinary things. But we can?t imagine love.
The great stories of literature are about meeting and falling in love, about infidelity, about passion. They are seldom about the routines of married life and having children.
We can imagine dramas and turmoil.But what no one can imagine is the day-to-day process of living with things and getting on with the humdrum job of loving. We can imagine only the beautiful and the terrible. We are drama queens, and our imaginations are incapable of giving us any help about coping from day to day.
So no, 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.
It?s not a matter of they, it?s a matter of him. 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.
I don?t want to sound too matter-of-fact here, any more than I want to sound saintly. Of course it?s difficult sometimes. That?s true for any parent and, God knows, many parents have more difficult times than Cindy and I do. I don?t, above all, want to give the impression that everything is easy because I am such a sane, balanced and admirable person. I am none of those things. I?m just a parent, playing the hand I?ve been dealt as best I can.
Some bits are hard, some bits are easy, some bits are fun, some bits are a frightful bore. That?s true of life with Eddie, it?s also true of life with Joe. But you don?t even begin to break it up into categories: it is the one endless, complex business of being a parent. 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.
I know that there will be many harder things to face as he grows older. No doubt we will take these things in the order in which they come. We can imagine a few horrors, of course, but we will live through the actual events day by day. And we will continue with other important tasks such as giggling and playing ball and providing hats and dealing with a world that can?t imagine the dreadful fate of being a parent to a child with Down?s syndrome.
What is it like to have Down?s syndrome? How terrible is it? Is it terrible at all? It depends, I suppose, on how well loved you are. Like most other conditions of life. 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 can?t say I?m glad that Eddie has Down?s syndrome, or that I would wish him to suffer in order to charm me and fill me with giggles. But no, I don?t want his essential nature changed. Good God, what a thought. It would be as much a denial of myself as a denial of my son. What?s the good of him, then? Buggered if I know. 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 for either the sufferer or the parents. I?ll go further: human beings are not better off without Down?s syndrome.
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 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.
Well said Simon, well fucking said!