Saturday, June 23rd .....

I enjoy a series on ABC Local radio which is called Conversations with Richard Fidler.  It airs at 11 o’clock each morning but I subscribe to the podcasts so I can hear them any time.  One I’ve listened to this week featured Ian Brown, a Canadian journalist whose son, Walker was born with a very rare genetic disorder.  There may only be about 130 people in the world with this condition.  Walker is now 14; when he was born there were probably 8 known cases, when he was 5, there were 20.   Ian Brown says: doctors can now keep these severely disabled children alive and then they hand them over to the parents to look after.  I suspect that, twenty years ago, some doctors might have made the decision not to go to too much trouble to help such a child to survive.  But today, what doctor would take the chance?

Walker can’t talk, seems to have no awareness of his surroundings and, if not restrained, hits himself constantly.  Nobody knows why.  Like all parents in this situation, Ian and his wife are often asked: If you could, would you change Walker.  Of course, we would, they say, not just for our sake but for Walker’s as well.  How could we sentence him to the life he is leading now? We have become used to parents of such children saying, sentimentally: We love him just the way he is.  It’s refreshing to hear an honest answer to the perennial question.

Like most parents with severely disabled children, Ian has often thought of suicide.  In a particularly Canadian way, he thinks of taking Walker into the mountains and lying down in a snow drift together.  At one point, though, Walker appeared on the point of death and his parents couldn’t contemplate what their lives would be like without him. 

Ian Brown says that one of the hardest things to live with is the way that people stare at Walker – a disfigured 14-year old in a stroller.  Teenage girls are the worst.  I loved his description of how this occurs.  He says that teenage girls live a life of conflict, at the same time wanting to stand out but needing to fit in.  They travel in threes, two short ones and a tall one.  They are all dressed the same – brief top, short skirts, the same wrist bands and so on.  The tall one is the leader and when she sees Walker she puts her hand to her mouth and leans down to whisper to the other two, and then they all stop and stare.  Ian says they are looking at their future as mothers and realising how hard that might be.

The conversation raised a lot of questions and some pretty significant philosophical issues.  Ian Brown has written a book, The Boy in the Moon and I am going to have to read it.

The hard part is trying to answer the questions Walker raises in my mind every time I pick him up. What is the value of a life like this – a life lived in twilight and often in pain? What is the cost of his life to those around him? “We spend a million dollars to save them,” a doctor said to me not long ago. “But then, when they’re discharged, we ignore them.”