The hardest time I had was that period before someone qualified could confirm what we already knew. ‘Your son has Down Syndrome. That won’t be changing. You must start to find out what that means for your lives.’
That didn’t happen for about twenty four hours. We couldn’t tell anybody, other than one or two very close people, that this little guy, still nameless, was different, just in case he wasn’t. Hard though it was to think about telling people that he had DS, it was unthinkable somehow to contemplate turning around and telling them that no, actually, he didn’t have it, sorry, got it wrong there. Bummer, but he’s ok. (Don’t ask me why. I haven’t figured it out yet. The doc did say that on occasion, when a Down Syndrome diagnosis gets undiagnosed because chromosome tests come back normal, it can be hugely upsetting for parents.)
When I got back home I picked up Chris and Andrew, our other two boys, from our neighbour’s house. Chris is six, Andrew three. I told them that they had a new brother. Suddenly the thing that had been missing was there. In all the uncertainty over his condition we’d forgotten a simple detail: we had a new baby! Chris’s face was a picture of joy. Andrew was less perturbed, but he was still loving the attention (and the chocolate) from the wonderful Helen and her family. The simple, normal reaction to extraordinary news was another little (almost unremarked) milestone on this new journey.
The next day we sat calmly in Dee’s pale green room at the hospital as the consultant told us what we needed to hear. Yes, our son had Down Syndrome. Yes, it would affect his development. We could expect him to reach an intellectual maturity of a twelve or thirteen year old at most. Of course socially, the doctor reassured us, his maturity could reach well beyond that.
I nodded and took it all in calmly, asked a few sensible sounding questions, filed all the information away for later. I had a vague-ish idea of what social maturity might mean. I considered myself well read, but I’d never heard of Trisomy 21, the specific type of Down Syndrome he has. I had no idea that he had 47 chromosomes whereas I had only 46. That extra one (good old chromosome 21) was the spanner that had randomly been dropped into his works and our world when his cells were forming.
We hope and pray that it doesn’t make things too difficult for him.