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Tuesday, 28 February 2012

The Worst Day

"Did you know he had Down's Syndrome before he was born?"

That's the first question that 80% of people ask us*. Perhaps they are curious as to whether or not we considered having a termination - that is, they want to know whether or not we had "chosen" the lifestyle. Or perhaps they just like to imagine the moment we found out, and want to get the details of the mental image just right.  Either way, they are nosey buggers who should not ask such personal questions.

Since it does seem to be a subject that interests people though, I have decided to tell you about it.  I have mentioned before that I want this blog to be a bit of fun - a celebration of our chaotic lives - but unfortunately this one is not going to be a fun story.  Let's get it out of the way quickly shall we?  The day they told me my son had Downs Syndrome was the worst day of my life, and even now, years later, the memory is not pleasant.  Stick with it though, and I will try and slip in something funny at the end. 

We did not know about Jamie's condition before he was born.  We had been offered a prenatal test, but were warned that the test did carry a small risk of damage to the baby.  We had discussed it and decided that whatever condition the baby had, we would want to keep it anyway, so we opted out.

So, it was the day after Jamie was born that we found out.  Meg and I were sat on the bed, feeling happier than ever before, holding our little boy between us, when the doctor came in. He was all smiles as he took the baby from us and carried out his little tests - he listened to the heartbeat, checked reflexes and inspected hands and feet. He was still all smiles as he told us that the boy's heart and reflexes were fine and that we had a beautiful healthy baby. He wondered if we had any questions. There was something about his turn of phrase that made me uneasy.  He seemed to be focussing on health a lot, but had not said the word "perfect", or even "normal", and he seemed to be avoiding discussing intelligence.

"Well," I said, "you've told me he's physically healthy, but how does he seem mentally to you? I mean, there's no sign of anything like brain damage, or Down's Syndrome... is there?"

I just wanted to be reassured that everything was as it should be, so that my happiness could be complete. I did not really think that there was anything wrong with Jamie.  True, I had thought that his eyes had seemed a little bit narrow, but since all the doctors and midwives had seemed so happy for us up until that point, I had dismissed the thought. As the doctor started to answer my question though, I noticed that his hands were shaking. He was still smiling, but the words he was saying were all wrong. I remember hearing "...many of the characteristics associated with Downs Syndrome..." and then I heard my wife wail. I suddenly felt weak and flopped onto the bed, vaguely aware that the doctor was showing us something on the baby's hands and feet. He had stopped smiling.

So that is how it happened.  I warned you it was not a barrel of laughs.

As I said earlier, that was the worst day of my life.  It seemed as though all of my dreams for the future had been wrecked.  Meg and I both agree though, that if we had known then what we know now, things would not have seemed anything like as bleak.

I would just like to end this post though, as promised, with a slightly more upbeat story (sort of).  A friend of ours, Lucy, who also had a son with Downs Syndrome, once told us the story of the time she was told of her son's condition.  Before I tell you the story, I want to assure you that she was a very nice woman, and that what she said was ironic.

Lucy had her baby in a hospital in London during the late 1980s.  The doctor who came to talk to her was an arrogant young white South African.  Lucy had already taken a dislike to him.  He told her about the Downs Syndrome sympathetically, but something about his manner seemed to suggest that he felt a Down's Syndrome baby was worthless, less than fully human.  Upset at hearing her child talked about in this way, Lucy replied, mimicking the South African accent - "Well, at least he's not black".  According to Lucy, the doctor then frowned, and left the room.

* The other 20% ask "Where did he get that ginger hair from?"

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