By Simon Barnes - parent to Eddie who has Down's syndrome:
The human imagination can do many extraordinary things. But we can?t imagine love. Or perhaps I mean loving: love as a continuous state; one that carries on in much the same way from day to day, changing and growing with time just as people do.
We can imagine dramas and turmoil. People make films about them. In our own minds, we often put together the most terrific stories about thrilling or devastating events that might befall us. 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. Marriage is not the same as falling in love; nor is it an endless succession of terrible rows and monumental reconciliations: it is about a million small things: things beyond our imagining.
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.
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. You know, from day to day.
That doesn?t make Eddie unique. I couldn?t imagine what it would be like exchanging a childless life for life with Joe. I don?t think anybody can do that sort of thing: it?s not what the human imagination does. You imagine bits that make you proud and bits that make you fearful. You can imagine reading him the Narnia stories, reading his glowing school reports, watching him score the winning goal and hearing the applause after his solo at the school concert. But you lack the machinery for imagining the routine of living with a child who grows up with you.
The fact is that nothing to do with love seems so terribly difficult when you get down to it. Nothing seems an impossible demand on your time, your resources, your patience, your temper, your abilities: not because you connect with your inner saintliness but because you just find yourself getting on with it: muddling through. Most non-parents imagine that they could never change a nappy. Then parenthood happens and they do it. It was the same thing when it came to living with Eddie. It?s just parenthood: everyone who has done it knows it.
So Eddie lived, and lives: burly and merry and, on the whole, pretty healthy. And once the surgery was done and the emergencies and dramas were over, it was time to get on with the business of living. And that is really rather an easy business. You live one day, and then you live the next.
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.
Parenthood is not really about the traditional round-robin Christmas letter: Jasper is school captain and is having trials for Middlesex at both cricket and rugby and played Hamlet in the school play of the same name, while Oxford and Cambridge have both offered scholarships. He has just passed grade ten on the cello. Parenthood is not about perfection, it?s much more interesting than that: it?s about making the best of what you have. Define best, then? Do that for yourself, but I?ll give you a clue: if you think it?s all about A levels, you?re on the wrong track.
So my task, then, is to bring the best out of Eddie. That is unlikely to involve A levels. 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.
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. Mostly they envy my job: I am chief sports writer of The Times, and people say: you?re going to the World Cup, you?re going to the Olympic Games, you lucky thing. Can I come? I?ll carry your bags.
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.