I had a brother named Garvan. He had been ill since he was born, he had no thumbs, was small for his age and had a rare blood disorder. He spent a reasonable amount of time in Great Ormond St Hospital in London. The death of a child is a terrible thing and I have many memories of Sunday at the cemetery with my parents and siblings. And tears- lots of tears. However, Garvan was one of the great lights in our family and one of four very different children. He was bright, loved maths (unlike me!), loved spaghetti (like me), was a brilliant artist and his writing at 12 was neater than mine is or will ever be (even though he had no thumbs). He knew he was not like other children and he put up with their questions patiently and with excellent humour. He also understood he was dying. He had asked my mother and she had decided to be honest and tell him that it was a possibility.
This knowledge gave Garvan a wisdom that no one had really expected. One day he told my mother that she should think about having another baby and that is why I am sitting here writing a blog. He said she needed someone else to hold when he was gone (since my other brother and sister were slightly more grown up) and that someone was me- my mother laughed it off but it obviously planted a thought in her head. She maintains that having a young child when Garvan died helped her to cope better than she otherwise would have. We still celebrate having Garvan in our lives and light a candle at the Christmas table to signify his presence.
Today children like Garvan are unlikely to have the chance to be born. Garvan loved life so much and knew how to live it with the most amazing gumption – probably because he knew there was a lot to cram in. He may have suffered but because of this suffering his understanding of the value of life became quite profound- profound in the most simple and honest sense. When I started this blog I wasn’t sure how much personal information it was appropriate to share-since I had never really read any blogs now I have read lots of brilliant ones and realise that sharing is a vital part of it- I now realise that it is important I tell you this. I wanted anyone who reads this to know that when I talk about living with a disabled child I recognise how difficult it must be to choose - I do not have my head in the clouds – I am aware of the reality; the pain and the joy. I want people to know that I choose life, that my parents who loved their child and had to endure him suffering would also choose life. Why? Not to validate their own choices but because that is what this amazing little boy – who is still so much part of our lives- would have chosen. The simple truth.