Sunday, 23 November 2014
At 7.37 am sixteen years ago today our first child, Isaac, was born. He had breathing difficulties from the start and spent the first two weeks of his life in hospital, two hospitals actually, in the special care baby unit and then maternity. He ended up spending a lot more time in hospital over the following years. At eight months he was diagnosed with a serious genetic disease, Hurler's disease, following a series of problems- deafness, hernias and then hydrocephalus. Before the age of two he had several operations and two bone marrow transplants, one of which nearly did for him. He has lived with many serious health issues and some severe special needs. In 2008, due a very weakened immune system, he contracted meningitis and survived. A very long operation to straighten his back was delayed by the meningitis and then some months later done successfully. Three years ago he had a cochlear implant which has changed his life, opening up a new world of sound to him. Funnily, a lot of this stuff I'm describing here seems like a long time ago- chronologically and in other ways too.
This list of medical issues and procedures only partly defines him and us. There's no denying it is and has been very difficult at times and that more troubles probably lie ahead. But almost everyone who meets him and gets pinned down for a chat leaves feeling happier. He knows far more people than I do. He makes friends wherever he goes. He has endless reserves and goes on where many others would just take to their beds and stay there.
So, turning sixteen today is a big deal in lots of ways.
Run Wild was a late addition to New Order's 2001 comeback album Get Ready. The tune is lovely, acoustic guitars and melodica and a sweet tune. Unusually the lyrics were written by Stephen (not Bernard), written for his and Gillian's seriously ill daughter. It's always struck a chord with me.