A few folks have emailed this article to me. I pass it along to you. The author writes for the Times, and is a fellow father of a child who lives with Down Syndrome.
By the way, I hope you are not too squeamish. This piece is not going to pull any punches. If you find the idea of love uncomfortable or sentimental or best-not-talked-about or existing only in the midst of a passionate love affair, then you will find problems with what I am writing. I am writing of love not as a matter of grand passions, or as high-falutin’ idealism, or as religion. I am writing about love as the stuff that makes the processes of human life happen: the love that moves the sun and other stars, which is also the love that makes the toast and other snacks. Love is the most humdrum thing in life, the only thing that matters, the thing that is forever beyond the reach of human imagination.
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 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.
read it all here
Sarah Joy's "show & tell" for kindergarden this am was "what makes me special?". She picked her favorite CD to bring along to the class, and said "I can sing, I can dance, and I can pray"
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