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Down syndrome in and out of love

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Gillian Bouras |  13 February 2017

 

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?

Baby with Down syndrome'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.

 


Gillian BourasGillian Bouras is an expatriate Australian writer who has written several books, stories and articles, many of them dealing with her experiences as an Australian woman in Greece.

Image: Down Syndrome Australia

 



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Gillian,that is a wise observation that"babies do bring their love with them " but there has to be someone to receive that love. It is an interesting idea that fear , lack of resilience,dread , or even physical or emotional inability to respond to that love prevents people from accepting the gift. These imperfections may apply to all of us in the many daily interactions we have with our fellow humans seeking love and understanding. The older I get the more Therese of Lisieux's simple way becomes the challenge of living the life. Do the little things. My friend's younger brother had Downe's syndrome and the lessons I learnt from her family have remained with me all my life. They were the epitome of a touching, successful ,holy family . Many people benefitted and were inspired from knowing t hem.

Celia 15 February 2017

I recommend the song Scorn Not His Simplicity, written by Phil Coulter after his first son was born with Down Syndrome (i believe he did not survive to adulthood, but not sure). It was written half s century ago, so the sentiments may seem different from what Gillian writes. The singer is the great Luke Kelly.

Frank 15 February 2017

When I was growing up in the 1940s and 1950s, children with all manner of disabilities were not seen in schools but were cared for in institutions or behind closed doors in their own homes. "Out of sight, out of mind" was the societal attitude. They were considered "woopy", the butt of derisory comment and mimicry. Their parents were often embarrassed by their child's abnormality. [But then, I did grow up in Queensland which I found when I left for other pastures really represented the "the deep north" with intolerance of the abnormal, the non-conforming, the non-Anglo-Saxon races and every other state in Australia.] The societal attitude had a lifelong effect on me and I suspect many others who grew up in that despicable environment. While practising medicine for forty five years I never overcame the extreme sadness that came to me with every experience of childhood abnormality, both physical and mental. I am now grateful that the world at large has come to recognise the great love that disadvantaged children possess and kindle in others who now care for them. I remain buggered if I know why God doesn't sort out such disability. He should be able to when, in the present day, mankind using gene shears and cellular nucleus manipulation can. It is sad that not everyone recognises the love that the disabled child can bring. People reckon I'm a silly old bugger. They may be right!

john frawley 15 February 2017

Parents generally love and want the best for their children. We want them to be caring, independent and responsible adults one day. Challenges come in all shapes and sizes, but a life long disability and dependency is more than challenging. It changes everything you are used to and ever imagined. A mother's career and ability to earn a good income, social life and freedom. Not to mention your hopes and dreams. The health challenges and emotional behavior you have to deal with is also massive. Medical costs and therapies are expensive. Then there is your mental health and this is on top of the usual everyday struggles. But then again, they bring their joy and gifts. Gifts of humility, compassion, love, strength and patience. You need to be there to receive love, but sometimes the struggles are overwhelming and you need a lot of support.

Cate 15 February 2017

In the years I lived in Japan I would return to Australia and my wife and I would accompany her mother to a local club for dinner - and raffles - which sometimes returned us a tray of meat - but lots of bonhomie with people known to my mother-in-law. Entry to this little bowling club was supervised by Leigh - a chap with Down Syndrome - but as competent - and serious - as any other club gatekeeper I have ever encountered. Cards of membership or identification were properly scrutinised and patrons welcomed in. Later he kept the general area cleared of empty glasses and such-like. Recently wondering what had happened to him I came across a letter in the regional newspaper which he had written regarding some matter or other - I recollect only - apart from being well-written -that it had something to do with disability. It seems clear to me that he must have had around him over the years of his childhood and adolescence those who had loved and encouraged him - and made him the clearly independent man he had become.

Jim KABLE 15 February 2017

Cate, your comments are practical, well balanced and spot on. Thank you for reminding us of the sacrifices some parents have to make and the strain on physical , emotional and financial resources. I wholeheartedly agree that Carers must receive support ,while they show us so visibly the humility , compassion and strength that is the hallmark of a caring society.

Celia 15 February 2017

Gillian, this is lovely work. You will enjoy your grandson. Every small achievement becomes more precious when it is hard won. My paternal grandmother, a mother of eight, had that same saying. My mother repeated it to me. I certainly found it to be true.

Pauline Small 15 February 2017

Wise words from Gilian, Cate and John - and a very cogent question from John. FWIW, and as a disabled person myself, John, my (limited) view is that the reason God doesn't "sort out" disability is that it is merely one aspect of the limitedness we all share. All of us have our weaknesses, our incompetences and most will experience disability of body or mind at some point in our lives. (Many folk with disabilities speak of others as "TAB"s - the Temporarily Able Bodied.) Some of our disabilities even feed our strengths. I suspect, for instance, that had I not been blind, I would not have developed the very good memory with which I have been blessed. Sighted people are often surprised when I say that I would not wish to be "cured" of the way I was made - and therefore be someone else. Disability is just another reminder of the mutuality which comes with the human condition. The people who love and care for those who can't look out for themselves in some way or other also need support, as Cate says. In some way, disability is an acute reminder of both our limitedness and our interdependence.

Justin Glyn SJ 16 February 2017

I read that these days few Danes are exposed to people with Down syndrome as they are aborted. Modern medical technology allows this to be done. Are we entering into the brave new world of Eugenics? Before we condemn the Danes out of hand, let it be remembered that Denmark is one of the sanest and most civilised nations on earth with an attitude towards women we need to emulate. During World War II Danes (with the assistance of Germans who looked the other way) rowed almost the entire Jewish population of their country across to safety in neutral Sweden. Danes are not, emphatically not, blonde, blue eyed neo-Nazis. I can understand parents being unable to cope with a Down syndrome child and I say this as the parent of a son with a developmental disability who I dearly love and who is now in his 30s. He lives at home. It is possible, with new developments in gene technology/therapy conditions such as Down syndrome could be abolished in the Western world. I do not see that as a bad thing.

Edward Fido 16 February 2017

Thank you all for your very thoughtful comments. I am certainly aware of the struggle and worry involved in caring for the disabled, and have nothing but praise for relatives and carers. An unsung nobility, very often. I am obviously no scientist: I should have written that people with Down syndrome have three of chromosome 21.

Gillian 16 February 2017

Another very insightful piece. Unfortunately love does not always come unconditionally to many of us

Stathis T 18 February 2017

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