Wednesday, 23 November 2016
At 7.37 am on the morning of November 23rd 1998 our eldest Isaac forced his way into the world, two weeks early. Today he turns eighteen. Some of you know his background. He was born with an incredibly rare genetic disease, Hurler's Disease (MPS1), which saw him taken off to intensive care immediately and he didn't come out for a week. Hurler's disease is caused by a missing enzyme which leads to all kind of difficulties- deafness, learning difficulties, physical disabilities and gradual loss of functions to an early death. There is no cure. Aged eighteen months he went through two bone marrow transplants that have put some of the missing enzyme into his body, a treatment that has given him the life he has now. He's had numerous operations for skeletal problems. One unforeseen consequence of the bone marrow transplant was that the chemotherapy used to enable his body to accept the donor material also destroyed his immune system which then failed to grow back. Aged ten with a weak immune system he got pneumonia which turned into meningitis, which floored him. Back into intensive care and not expected to survive the night. Coma and eventual recovery but with his hearing completely wiped out. It's been a long road.
But that's only some of the story. He is in good health currently, goes to special needs 6th form college, has trips out with friends, knows more people than I do and is having a party on Saturday where we are expecting roughly 150 guests to show up. We are transitioning into adult services from children's, both hospitals and social care, which for us is daunting. He just gets on with it. The remarkable thing isn't his continued determination to carry on against the odds or his resilience in the face of disability (though they are pretty remarkable). The remarkable thing is the connections he makes with people, the impact he has on them and the joy he gets from them.
Eighteen years ago I was totally unprepared for this- having a child is change enough. Having a disabled child is another world. Looking back now I'm not sure how we coped with some of the things he and we went through. But here we are. One of the things he wants the most on becoming an adult is to have a pint poured for him (which he won't drink but it'll be poured and sat with). So if you're raising a glass of anything tonight, have one with us.
When I drove Mrs Swiss to hospital eighteen years ago the last song that played on the car stereo cassette player was this, Cinnamon Girl- still I think my favourite Neil Young song (which I don't have on the hard drive right now).
'A dreamer of pictures
I run in the night
You see us together
Chasing the moonlight
My cinnamon girl'