Ten years ago I heard Peter Rose interviewed by Sally Loane on ABC radio. He was discussing his latest book, Rose Boys.
ďSome people think that Rose Boys is about sport or Australian rules. Itís really a chamber piece, looking at four people of very different types: my mother a singer, me turning out to be a writer, these two sportsmen, and then a family presented with an awful tragic accident.Ē
During the interview Rose spoke about his brotherís tragic accident at the age of 22 and the aftermath of that accident which left his brother a quadriplegic.
At the time I had just had my fifth child and was concerned about the implications our eldest sonís profound physical disability would have on his four siblings. I wanted to know what it felt like to be the sibling of a young man with a disability. Did he bear a grudge for the time consuming nature of his brotherís care or did he admire his brotherís daily battle to survive?
As I hurried off to purchase the book I was looking for answers. Someone to reassure me that my four able bodied children would pull through as fairly well adjusted adults.†It is a brilliant book, but gave me no answers. It was a different situation. An accident at the age of 22 is very different to a lifelong disability.
Family life has always revolved around the care of our eldest son (now 20). His diagnosis is spastic quadriplegia with athetosis. Translated this means he can only move his head, he makes the most out of this ability writing on a laptop using a head switch, regularly emailing numerous friends.
Up until last year we had managed fairly well to make sure the other children didnít miss out on opportunities their peers had. Then our son got sick.
Recently, on a good day, a medical expert visited our son. It was the first meeting and I merrily told the expert things were going well today. As I lifted up his top, the medical expert gasped at all the patches on his torso. He has a hickman line in his chest (for intravenous feeding), a gastrostomy peg site in his stomach, a morphine patch on his upper arm and scar tissue all over his abdomen that would make you weep. There is so much scar tissue that we have been told not to use a heat pack as he would not feel the heat and as result could end up with a burn. These are things that make others gasp, but for our family they now seem almost ordinary.
Our son is affable, determined to live and enjoys life every day, especially those days spent with the family. He has a group of brilliant carers who come to the house every day, a number of them, young men our sonís age, †who are putting themselves through university by caring for our son.
It is our sonís personality that has drawn so many wonderful people into our lives. His siblings have grown up in a house where the front door is a revolving door of carers, but many have become dear friends of our family.
Last year all four of our sonís siblings celebrated their birthdays whilst he was in hospital. They were all celebrated as a family in the coffee shops of two different hospitals. Our eldest daughter was 21, a significant birthday. No one complained.
On the weekend, a year later, two of our daughters had birthdays; they are born one day apart. We all went out together. I remembered where we had been last year, but no one else mentioned it. It seemed it was long forgotten as we enjoyed the day, all seven of us. This year they are all having parties to celebrate their individual milestones. Our son has not been in hospital since April and as things are stable it seems the right time. The parties will all be at home and their brother, who is the most ardent partygoer, will be joining in the celebrations.
I am not sure what the long-term effect of having a brother that needs so much care and attention will be. Maybe later in life one of my children will pen a book that reveals all sorts of things I wish they hadnít, but for now there is already something about them that makes them stand out from the crowd. They are not brilliant students or in the top sporting teams at school, but they do have empathy and they have it in spades.
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