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'
21 comments:
Raised a glass to the Lad, and another to what appears to be one damn fine dad.
Well done mate - sounds like you've crafted a good one there.
I'll certainly raise a glass to you and yours this evening, cheers
Happy birthday Isaac I hope you have a great day and also well done to SA, Mrs Sa and Eliza. I'm in Belfast for a couple of days and will raise a pint of the Black stuff in Isaac's honour tonight
Have a great day Isaac! Inspirational.
Congratulations to Isaac, to all of you in fact. What an incredible story.
Happy birthday Isaac. An inspirational young man, with remarkable parents.
Oh my goodness, I am all but lost for words... can only echo the above: ncredibly inspiring and remarkable. Will raise a big glass of red to all of you tonight. Happy birthday Isaac.
Great track too.
You know, I follow this blog for so long now and every year on Isaac's birthday the post of the day brings a very big smile to my face, because I see the young man apparently is doing fine and copes with all those difficulties better than the rest of us do with our shitty little problems!!!
All the very best, Isaac, enjoy your big day and I'll certainly have a drink on you, if not tonight, then on the weekend!
That's really beautiful. You can't beat hearing someone talk about someone they completely and utterly love. I don't usually have a drink on a "school night" but in both your cases I'll make an exception. Happy birthday Isaac, and what a great Dad you have!!
Sounds like Manchester is the place to be on Saturday!
Happy 18th Isaac. I too will be raising a glass to you and your inspirational family
Well done you and well done Isaac
Happy Birthday Isaac,I'll raise a glass to you and your family. Just keep on being you. Lovely words as always SA
Happy birthday Isaac. A marvellous and wonderful read SA. Utterly lovely.
Swc
As the parent of a special-needs child six years Issac's junior, I have always found your updates about him an inspiration. Congratulations to you and Isaac. The glass will be raised tonight.
This is a great tale and like Dirk, every year when I read your celebration of him I feel a bit better about the world.
Well done to all of your family
Buon compleanno Isaac. Bravo SA!
Here is to a Happy Birthday to Isaac and continuing to be an amazing adult. Break down those barrier and continue on through.
I almost cried reading that. Adam, blessings on you and Mrs Bagging Area for giving Isaac such a loving environment to grow up in. It really shows in him. Some inkling of how full on and non stop it must have been for you these last 18 years dawned on me when I visited you the other week! I shall raise a toast to y'all. I trust it will be a good bash 💕
To all of you, most of whom I've never met- many, many thanks. It's humbling and shows that the internet can be a force for good. Love you all.
Blessings to you and your (clearly awesome) brave boy.
As others have said, the postings over the years featuring young Isaac have been inspirational and uplifting.
I did notice via social media that the party was a success and he had a ball. It must have been a night that brought a few lumps to the throat of yourself and Mrs Swiss. You've proven to be magnificent parents.
Belated happy 18th birthday Isaac. If you ever want to pay a visit to Scotland, and in particular to Glasgow, then I would be honoured and thrilled to be your host.
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