Iggy Pop is one of the few people active in music who deserves the overused title legend. Forget the insurance adverts. He's made five solid gold-plated albums (The Stooges, Funhouse, Raw Power, The Idiot, Lust For Life), lived it to a greater excess than most and kept his marbles, shacked up with Bowie in Berlin in 1977 (now there's a film that needs making), inspired most of the people you like, looks great, and still seems like an intelligent, articulate bloke. But this post isn't really about Iggy. It's about I.T.
Our son was born a bit over eleven years ago, and had problems from the start. Intensive care from birth for two weeks, hearing aids from two months, various surgeries from five months. At eight months he was rushed to hospital with hydrocephalus, and underwent emergency surgery. They punctured his head to release fluid and then fitted a VP shunt to let his cranial fluid circulate. Days later he was diagnosed with MPS 1 (Hurler's Disease), a very rare and very serious genetic syndrome. No cure. A bone marrow transplant would deal with some of the problems and allow him to live beyond ten years old, but still with multiple issues. Over the next 18 months I.T. had two bone marrow transplants (the first failed, I donated for the second which worked). Since then we've shifted into the lives of parents with a disabled child with multiple special needs and learning difficulties. Despite skeletal problems, severe deafness, severe learning difficulties, a leaky heart valve and sundry other symptoms I.T. became a walking, talking life-and-soul kind of child, charming all who met him. In 2008 I.T. contracted pneumonia (weak immune system which never fully regrew from the bone marrow transplant). The pneumonia crossed into his bloodstream and spread to his brain. Hospitalised- stroke, meningitis, near death, brain surgery, intensive care, increased deafness, skills lost that have had to be re-learned. Not good. Since that time, in the last few months, I.T. aged eleven has started puberty, brought on early by the meningitis. Special needs with puberty is an interesting mix, and Mrs Swiss and I, and our daughter E, are finding it tough.
I've thought long and hard about this post, and I've been in at least two minds about publishing it. I'm not looking for sympathy, or even to widen awareness about these hideous diseases (go to The MPS Society if you want to know more). But as it's developed over the last few weeks this blog seems to be about music and the affect it's had on me, which when put like that seems pretty egocentric, but we'll let that pass for a minute. I.T. doesn't really like music- hearing aids make everything a tinny, distorted mess. I've got records that sound like that anyway. He hardly ever makes a response to music, and I suppose in some ways that's affected me, as I always thought I'd pass some musical taste on to my son, even if he went on to reject it all in his teens. Anyway, to cut to the chase, the only time I can remember he's responded positively to a song I've played was in the car, a few years ago, driving over the North Yorkshire Moors on the way to Scarborough for a family holiday. I had a cassette in (a cassette!) and Iggy's The Passenger came on. An inexplicably good song, one riff repeated for two minutes, coke-numb vocal, two hooks but stupidly good. Out of nowhere, after the first la-la-la-la la-la-la-la bit, I.T. joined in, and sang it the next time it came around. I was moved. Thanks Iggy.
10 The Passenger.wma
Our son was born a bit over eleven years ago, and had problems from the start. Intensive care from birth for two weeks, hearing aids from two months, various surgeries from five months. At eight months he was rushed to hospital with hydrocephalus, and underwent emergency surgery. They punctured his head to release fluid and then fitted a VP shunt to let his cranial fluid circulate. Days later he was diagnosed with MPS 1 (Hurler's Disease), a very rare and very serious genetic syndrome. No cure. A bone marrow transplant would deal with some of the problems and allow him to live beyond ten years old, but still with multiple issues. Over the next 18 months I.T. had two bone marrow transplants (the first failed, I donated for the second which worked). Since then we've shifted into the lives of parents with a disabled child with multiple special needs and learning difficulties. Despite skeletal problems, severe deafness, severe learning difficulties, a leaky heart valve and sundry other symptoms I.T. became a walking, talking life-and-soul kind of child, charming all who met him. In 2008 I.T. contracted pneumonia (weak immune system which never fully regrew from the bone marrow transplant). The pneumonia crossed into his bloodstream and spread to his brain. Hospitalised- stroke, meningitis, near death, brain surgery, intensive care, increased deafness, skills lost that have had to be re-learned. Not good. Since that time, in the last few months, I.T. aged eleven has started puberty, brought on early by the meningitis. Special needs with puberty is an interesting mix, and Mrs Swiss and I, and our daughter E, are finding it tough.
I've thought long and hard about this post, and I've been in at least two minds about publishing it. I'm not looking for sympathy, or even to widen awareness about these hideous diseases (go to The MPS Society if you want to know more). But as it's developed over the last few weeks this blog seems to be about music and the affect it's had on me, which when put like that seems pretty egocentric, but we'll let that pass for a minute. I.T. doesn't really like music- hearing aids make everything a tinny, distorted mess. I've got records that sound like that anyway. He hardly ever makes a response to music, and I suppose in some ways that's affected me, as I always thought I'd pass some musical taste on to my son, even if he went on to reject it all in his teens. Anyway, to cut to the chase, the only time I can remember he's responded positively to a song I've played was in the car, a few years ago, driving over the North Yorkshire Moors on the way to Scarborough for a family holiday. I had a cassette in (a cassette!) and Iggy's The Passenger came on. An inexplicably good song, one riff repeated for two minutes, coke-numb vocal, two hooks but stupidly good. Out of nowhere, after the first la-la-la-la la-la-la-la bit, I.T. joined in, and sang it the next time it came around. I was moved. Thanks Iggy.
10 The Passenger.wma
4 comments:
That was beautiful. (And you may even have rescued Iggy for me.) D
iggy does every time.
Not been around here or other blogs for a few weeks. Sorry it has taken so long to read this amazingly moving bit of writing.
I wont be able to listen to The Passenger again without thinking of your young 'un.
I've a godson who, at the age of 5 suffered an accident which left him blind, brain-damaged and larley immobile. He wasnt expected to live beyond another two or three year, but he's now nearly 19. And I can wholly empathise with you saying special needs with puberty is an interesting mix.
Best wishes to one and all.
Thanks JC. I've only just caught reading your comment, sorry I didn't reply sooner
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