I did something yesterday that I haven’t done for a very long time. It was stupid, really, and I knew I shouldn’t have done it the moment I clicked on the link. I read an article about the health of people with Down’s Syndrome. Now, you’d think, what with me being a ‘knowledge is power’ kind of person that I would be constantly reading everything I could find on the condition, but it’s not something I have done since the very early days.
Back then, when I was in the hospital awaiting the results of tests, low muscle tone was instantly obvious. I found out that babies with Down’s Syndrome carry a 50% chance of having a heart defect. Because this was the thing that was preventing our escape from hospital and necessitating a visit to a regional centre for a scan, I picked it up pretty quickly. I also discovered that there could be problems with a disconnected gut when everyone examined his first poo and wee with great relief. While I was waiting for my pass to freedom, I was given a sheaf of leaflets which, as there wasn’t much else to do when the baby was sleeping, I read. I probably did a bit of googling when I got home, but I soon stopped. (I didn’t have broadband, for a start.)
Like teachers, those who work in health care and medicine have a way of referring to the people they serve that protects them from getting their emotions too closely involved; it is a clinical, impersonal language that I, not being part of the clique, don’t understand. They spoke of a terrifying future for my son, and, by association, for me. And the things I found out, they frightened me.
Now, I’m a planner. I’m a primary school teacher, and I like to know where I’m going. My time is chopped up into little bits, and I assign jobs to each and put them in a timetable. I have aims and objectives, a point to which I am heading and head for it I do. I like it. If I had my way I’d have the rest of the family planned to the nth degree, but they resist me, the rotters, led by their father, R.
He, as opposed to me, doesn’t plan a thing. Well, not in the same way I do, anyway. He used to. He used to have plans and make them happen, but then something happened to take them all away and he decided that going with the flow was more appropriate. When I first met him, I didn’t fully appreciate his mindset. Back then, I was mostly impressed by spiky hair, bass guitars and ripped jeans patched with beer towels (my poor parents – his were relieved when I was introduced), I never gave a thought to what the future might bring, except that it was there.
For a while, when we were first married, I was obsessed by it. I dreamed of a job, a home, another home, decorating, babies; the sorts of things that young people like me fantasize about. But when Sam was born nothing was as it seemed. My world rocked upon its hinges. Instead of being exciting, the future became a black hole of anxiety, filled with very real fears, very real possibilities, not for me, but for this vulnerable person who held my heart in his tiny fist.
When I was at school I remember a term’s worth of work we did as part of our PSHE course in Year 8. It was called ‘Space and Chips’. The thrust of the lessons were space and computers, the two being inextricably linked in the minds of the 1980s, and I didn’t like it. It wasn’t that I didn’t like computers (how to start up an Amstrad proved quite useful when my dad got one and couldn’t get it going, its green cursor blinking smugly at him late into the night drove him into quite a temper, I recall), and it wasn’t that the study of space was uninteresting. It was that it made me feel so small, so insignificant. A tiny dot, sailing silently through the immense blackness of space on an unremarkable planet in a back water solar system. This is not how the young teenager, full of her own importance, likes to see herself.
My own children, though, aren’t at all phased by their relationship to the wider universe. This summer, we went on a glorious outing to the Royal Observatory. We had a wonderful time, looking for the clocks, marvelling at the things you find out when you are seeking the answer to something else. We popped next door to the Planetarium, and the good natured going-along-with-the-parents vanished in a rush of enthusiasm. They got their hands stuck in the hands on, they turned to me, eyes like saucers, as, at the end of a video presentation, they were informed that they were made of stardust. Their connection with the universe didn’t make them feel powerless; it filled them up with possibility, with infectious joy, and in that moment, I too rejoiced. The stars shone in my eyes too.
I never had myself pegged as a slow learner, but sometimes it takes me a while to get it, I admit. My husband regularly rolls his eyes as I flounder around, determined to figure things out for myself, reluctant to believe experience I have not yet had. Sometimes, you read words in your formative years, and they come back to you, much later, rich with significance. The future might still be an uncertain zone. There are many things about Down’s Syndrome that I have yet to find out. But if I do that, if I rush to the digital crystal ball to gather every byte of knowledge I possibly can, will it help me? Will all my worry, all my anxiety, all my heartbreak at malformed teeth change one thing about tomorrow? Will it change my parenting? I’m still going to be insisting on cleaning them twice a day, six monthly visits to the dentist and long periods between sweets.
Sometimes there are things you only need to know on a need to know basis. Because otherwise, that need to know about tomorrow stands in very grave danger of poisoning today.