A robust, bracing piece from Simon Barnes the chief sports writer of the (UK) Times on life with his Downs’ Syndrome son, Eddie.

So Eddie was born, and I have spent the subsequent five years living with him. Not living with Down’s syndrome: what a ridiculous idea. Living with Eddie. Who is my boy. And that really is the beginning, the end of it, and the day-to-day routine of it.

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. Please do not read this as a brief genuflection, one of the ploys of married life. Nor is it a literary trick. It is rather the literal truth. One small example. I have two goldfish in my study, both the size of salmon. When one fish was much smaller, Cindy found him dead: flat on the bottom of the tank. She lifted him out and somehow revived him. It was a long and elaborate process, and it worked. That is the sort of thing Cindy does. 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. Amniocentesis? Not a chance, it puts the child at risk. And no matter what such a test would say about the child, she would go ahead. There was a life that had to be cared for.

This was not negotiable. It sounds, I know, a little dreadful to put it this way. Certainly, I lack the courage to stand between Cindy and someone she loves. The Devil himself lacks that sort of courage. 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. Well, we needed a name and Joe, to whom I had indeed read the Narnia stories, was especially keen on that one.

A name changes everything, and even when he was in the womb we were not wondering about how we would cope with A Child With Down’s syndrome. We were wondering about living with Eddie.