“When I was a boy of 14, my father was so ignorant I could hardly stand to have the old man around. But when I got to be 21, I was astonished at how much the old man had learned in seven years.” Mark Twain
It’s a little personal failing of mine that at every age I’ve always considered myself to be as clever as a cat. Of course as I get older and I look back, I realise just how thick I really am. That much has been fairly consistent at least, but even here in the middle ages I still suffer from the illusion that now, finally, I really have learned something. It will undoubtedly become apparent in five years’ time that I was wrong again, but at least knowing that now is some kind of progress, no?
Certainly, one lesson I have learned is that observing people’s reactions to important news will teach you a hell of a lot about them. Dee and I were dealing with hugely conflicting feelings when the baby’s condition was confirmed. Our emotions were up and down minute by minute, and we hadn’t properly absorbed any of the information that had been given to us by the incredibly supportive staff in The Coombe hospital.
We didn’t have anything as organised as a strategy, just confusion. We started telling our families, beyond the two or three people we’d let know from the outset. It was apparent very quickly that family would be incredibly important to us now. Not necessarily for practical, on-the-spot help (although that too), but more as an immediate emotional support, a comforting and strong presence. They were all fantastic, and I won’t ever forget the acceptance, the concern and the instant, unthinking offers to help that our brothers, sisters and inlaws rushed to give us.
One or two of the gang had worked with Downs people, but nobody in the extended group had any family experience of it, and it came as a massive shock to everybody. Without question it hit our parents hardest. They dealt with it in various ways: through silence, or by clinging to a misdiagnosis hope, or by being visibly depressed. I think their experiences of people with Down Syndrome, a generation or more earlier, brought its own baggage. It makes me sad now to think of all those beautiful people whose lives were never really all they could be because the condition was misunderstood, and effective therapy just didn’t happen. Forgotten lives, lived in someone else’s misguided shame.
I don’t judge the previous generation for that. I am thankful for Jacob’s sake that progress in the last few decades has been wonderful. It has also, I believe, made it easier for our parents now. They’ve all been completely selfless in their support and they’ve had to deal with it, same as the rest of us. I think that they’re coming to see it less and less. (That has to be one of the miracles. The closer you stand to it, the less you see of it. I’m writing as the father of a sixteen week old boy with Down Syndrome, and I need to remind myself frequently that he has this condition. That gives me a quiet chuckle.)
Reaction amongst friends too has been hugely positive. It’s been quite funny to see the spectrum of responses. One or two well-meant (but slightly too positive!) people congratulated us TOO LOUDLY ON THE WONDERFUL NEWS! Quite a few blurted out the ‘I’m really sorry… I mean, not sorry, but…’ line. Some were just very uncomfortable at first, not knowing what they should or could say, or how they could help. I imagined that I could sense all of them saying ‘Jesus, that could’ve been us.’ That’s fine too. I would’ve felt the same way, I think. But knowing Jacob now I’m only pleased that he chose us, and can’t imagine him being anyone else or any other way. He’s perfect. That sounds very Hallmark, I am aware, and my wife will probably respond with a ‘Pass the bucket.’ It’s true though. 🙂
But. There’s always a but. And it goes back to what I said about learning from the reactions of others. Those hollow, off-the-cuff responses from acquaintances that left me with a momentary distaste. The shocked looks, bordering on revulsion, that escaped before they were brought under control. The ones where it was quite apparent that we had a plague child and that but for the grace of God there went they. Yeah, we got one or two of those. And I won’t lie, all the positive vibes in the world from 99 people STILL take a dent when you’ve got just one who’s ignorant and not smart enough to hide it. You can’t blame them. Oh yes you can. They don’t know Jacob. They don’t know what a gift he is. They don’t know that I have a special prayer now that I sometimes find myself saying when I have Jacob in my arms.
There, with the grace of God, go I.