March 7, 2010 8:52 AM

A father's take on Down syndrome

Simon Barnes: life with a son with Down's syndrome

My son's function is to be loved, and to love in return. Perhaps that is everyone's real function

Simon Barnes at home in Suffolk with his son Eddie, 5

For some years I shared my house with a tiger. Well, he was only intermittently a tiger, but the times when he was a tiger were profoundly significant for us both. I remember the first time: he was at his grandmother's house and came across a tiger mask. . . . Eddie roared. He made his fingers into claws and roared again. After that, for once Eddie has taken a fancy to a notion that he is reluctant to let go, he spent a great deal of the evening roaring and it seemed likely that we would need to get the tiger mask surgically removed before he went to bed.

Eddie is my second son, and he has Down's syndrome. Animals have been as important in his growing up as they have been for Joe, my first, as they are for every developing human. The signing system of Makaton has been of immense importance to Eddie, and among the first signs that he was able to do (after biscuit) were cat and dog. To sign cat, you draw whiskers on your face with your fingertips; to sign dog, you stab downwards, paw-like, with two fingers on each hand.

Our dog Gabriel, a black labrador bitch, helped to shape Eddie's universe. A deep joy in his life was to curl up alongside Gabriel in her basket. If ever Gabriel causes me passing irritation, I remind myself that she is not so much an angel as a saint, whose generosity to Eddie is worth commemorating on a stained-glass window. She has scarcely uttered a cross word in Eddie's direction, never once snapped: only occasionally, when the ear-pulling and tailtugging became too oppressive, she would sigh and walk into another room. Because of Gabe, Eddie knew that he was living in a world full of kind and generous creatures.

I was rung up the other day by someone I had never met. His wife had just given birth to a girl with Down's, and he was struggling. So I was happy to talk about my own experience: to tell him that, really, it's not something to get too desperate about. It seldom occurs to me that Eddie's life could have been something else: I have never for an instant thought that our family is blighted or even compromised by his existence. The exact opposite is true. Nor am I an angel or a saint: I am just another dad, getting on with things as best he can, trying to emphasise love above exasperation.

We had been told after the scans that there was a 50 per cent chance that Eddie would have Down's. We didn't go for an amniocentesis because that might have killed him, and, in any case, my wife Cind was not considering a termination: not her way, to evade responsibility for anyone or anything put in her charge. Long before he was born, or before Cind knew of his nature or his condition, Eddie was the beneficiary of the most ferocious love: of a loyalty without question or constraint. That's Cind's way. Me, I followed, a poor but enthusiastic second. So Eddie was born and had two holes in his heart, and our immediate concern was not the nature or the fact of his Down's syndrome but whether or not he would live. He had open-heart surgery at four months, and now, aged 8, he is built like a little bull. . . 

. . . .What is Eddie for? A question worth asking, I think. The Nazis sent people with Down's to the ovens, because they polluted the purity of the race. And before we shudder at such barbarity, we should remember that most women pregnant with a baby with Down's syndrome choose to abort. It's clear that many people believe that a child with Down's has no point: that such a being is extraneous to human needs, a mere burden on society and, in particular, on the parents. Best get rid of them.

The reality of Eddie's life contradicts all that. At school, he is held very dear. The headmistress has said that her school is a better place for his presence: because Eddie is there, the school's small society has become more caring, more gentle, more at ease with itself. At the end of the last school year, Eddie won the Peace Prize, voted for annually by the entire class. The prize is given to the kindest, most generous and most helpful child.

Eddie comes with us to shops and restaurants and pubs and cafés, and I have never heard a whisper of distaste. Au contraire: Eddie, when in a sunny mood, becomes an instant favourite, the people he encounters relishing the chance to do small things to make him happy.

Is that enough, though? Shouldn't an individual contribute something to society? Eddie's function is to be loved, and to love in return. Perhaps that is everybody's ultimate function. Eddie enriches the lives of his family and enriches the lives of those he comes into contact with outside. That seems to me to be a life right on the cutting edge of usefulness.

It's some time now since Eddie was last a tiger. He is often a dog, and will fetch sticks and bark; and he is sometimes a cat. His current favourite book is about a dog called Floppy who rescues a litter of puppies from a fire, part of an inspiring series with which he is learning to read. He does, however, still sometimes give a jocular roar when it seems appropriate. Once a tiger, always a tiger.

Love,

Posted in Down syndrome, Fathers | Permalink

Comments

This was beautifully written. I agree that the role of a down's syndrome child is to bring out the best in whomever they meet and to provide unconditional love.

My brother John had down's syndrome and died this past Chrsitmas Eve at the age of 40. He was the light of our family. He was one of 5 children and we all adored him. My mom cared for him for 39 and a half years before the alzheimer's became a bit over-whelming. We called the pair :the little ones" because they were inseperable buddies and life partners. (and both short and cute)

At 39, we threw a huge surprise bithday party for him in Charlotte. We came from all over the country for the party. My Mom took him to the hotel and told him they were going out of town for a business meeting regarding insurance. Surprise!!!! He loved it!!!!

Santa came to Mom's house for 40 years. I never missed one Christmas with him.

Anyhow, I hope your Eddie is as much fun as John was. John had a really good snese of humor and always made us laugh.

Have fun with Eddie. You are so fortunate to have someone so special to care for. He is fortunate to have you as his Father.

Martha

Posted by: Martha | March 7, 2010 9:23 AM

Simply beautiful! What a wonderful heart this man has.

Thank you for sharing it.

Posted by: von | March 7, 2010 3:32 PM

what a wonderful quote! I think we should always think that about all of God's children

Posted by: Mary Eckstein | March 7, 2010 6:28 PM

My amazing brother, Charlie, had Down Syndrome. Charlie lived to be 53 and just passed away Jan. 25th, 2011. I am his little sister, Marie, and I feel like part of me died, too. Losing him has hurt more than any other death I have endured, and at this point in my life (I'm 43) I have lost my parents, grandparents and another brother. Yet, nothing has prepared me for this depth of loss and this terrible pain. My email is mgmeza367@yahoo.com if anyone has any advice.

Posted by: marie | March 30, 2011 5:50 PM

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