A long ago school mate of mine had an older sister called Edith. I wondered why Edith didn’t go to our school; I wondered about other things, too. Worrying things. What was the matter with Edith?
‘Edith doesn’t really look like us,’ I eventually told my mother, who knew the family. ‘No, she doesn’t,’ agreed mum, ‘and that’s because she was born different from most people. But there’s no need to worry; I know she’s quite happy, and that her family loves her. Babies bring their love with them, and that’s a fact.’
I eventually learned that Edith had Down syndrome, although that was not the term used back then. I also learned that this syndrome is the result of an extra chromosome: Down syndrome individuals have two of chromosome 21. One out of every 700–900 babies born world-wide will have the syndrome, and there are currently approximately 13,000 Down people in Australia.
Because of advances in medicine, life expectancy for people with Down syndrome has been increased to about 60. I never learned what happened to Edith, but Down people at that time had a life expectancy of only about 40 years, if that.
My mum had a point: such children as I have observed in the long years since I knew Edith have been happy and loved. One I know is now a mature woman who leads a full life, despite the indifferent health that is often part of the condition. She learned to play a mean set of drums, could beat her brothers at billiards, had a job in a supermarket, and became a guide at the Sydney Paralympics.
I was reminded of Alexandra recently, when during a short flight I sat next to Emma, who clearly had the syndrome. It was impossible to tell how old she was: I thought she might be 19 or 20. She was accompanied by an efficient, attractive woman in her 40s, whom I took to be her mother, such was the care she bestowed on Emma.
This woman provided a packet of chips when takeoff was delayed, held Emma’s hand during takeoff and landing — experiences that she clearly found frightening — and organised a colouring book and crayons so that she was happily distracted and organised for the duration of the flight. The deep affection between the two was obvious.
It turned out the woman was Emma’s carer. ‘I’ve looked after her for seven years. She’s excited because we’re going on holiday. I’m looking forward to it, too, but I admit I feel the responsibility.’ This was completely understandable, the more so as I realised that Emma was very different from Alexandra. I asked Emma how old she was, and she told me she was 30.
“Babies do bring their love with them, but there has to be someone there, ready to receive that love.”
‘What about Emma’s parents?’ I asked. The carer shrugged and grimaced. ‘Me, I love her, but they just don’t care.’ I didn’t press the point, but remembered that my mum was not invariably right, for once I heard about a woman I had known vaguely, again long ago. She gave birth to a baby boy with the syndrome and, clearly feeling unable to cope, promptly put him in an institution.
I cannot point a finger in judgment. Having been extraordinarily blessed in having three healthy sons, I cannot say how I would have reacted if any of them had been born with this chromosomal abnormality. Or with any other problem. But my youngest grandson, now nearly four, we learned after a long time, was born with a defective chromosome 17.
Fortunately his is a mild case, but his parents were not to know that initially. In the event they rose to the challenge magnificently, and have been the very patterns of fortitude. And have had their reward in seeing their child grow and flourish.
I admit it is easy enough for me to say, but now I think that Emma’s parents and the woman from long ago missed out on an opportunity, and on many blessings. Because of fear? Dread? Lack of faith in their own resilience? I do not know. I know, however, that babies do bring their love with them, but I also know there has to be someone there, ready to receive that love.