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