I was chatting to another special needs parent this morning, comparing our daughters’ progress (he has a 14year old with Downs Syndrome) and our weekends – as you do.
I told him what my mum was currently going through (the medical miracle that she is) and he mentioned companies that offer full body scans which apparently can predict the likelihood of cancers, strokes and other nasties, based on genetics and advanced screening.
His reaction to these was “I wouldn’t want to know” but mine was different, I would want to know and here’s why:
As the Mumma to two autistic children, I want to be around for them for as long as possible. We are lucky, on both sides of the family there is a history of angina and more recently, strokes, but hearts are strong and healthy. No cancers either until recently.
Were someone to tell me that I had a tiny lump which was genetically disposed to turn nasty in ten years then I would have a choice of removal. Similarly strokes and diabetes: there are lifestyle changes that can be made.
It wouldn’t be for everyone though, I think you’d have to be strong emotionally and mentally.
I can think of a very good example in which this may have been useful:
We had a friend, a good friend who went through years of hormones and IVF without success. Practically as soon as they married 9 years ago.
She developed breast cancer 6 years ago and all fertility treatment was stopped, it had to be. She went into remission and they started discussing the process again and also considering adoption/fostering.
The cancer returned, in her brain. Completely unexpected as the doctors hasn’t scanned above her neck. She died five months later, nearly 2 years ago.
It has not been proven but there has been speculation that the intense fertility treatment may have advanced the tumours, no one will ever truly know but she went through years of treatment and failed hopes to no avail.
Maybe, advanced notice would have meant that her and her husband could have enjoyed the few years they had together more. I don’t know.
What I do know is, that once she knew her timescales, she planned, saw who she wanted to see, went (within reason) where she wanted to go and became very peaceful. The little things just simply didn’t matter.
Some people might think this is playing devil’s advocate but it’s certainly made me think today.