Wednesday, 4 February 2015


I don’t lay awake at night worrying if my son is going to become a crack addict, a burglar, or a Scientologist. Or how, when he’s 18, he’s going to shave off all his hair, tattoo his face with a Swastika, and join a motorcycle gang in Iceland. I don’t spend every waking hour terrified that he’s going to get leukaemia. Or be in a car crash. Or decide to change his name by deed poll to Neverendinglovefor Cliff Richard. Junior.

I don’t do these things, because that would just be weird. So why is it that for the first terrifying part of my daughter’s life, I couldn’t stop imagining the worst possible future for her?

When doctors told me my poorly baby girl had Prader-Willi Syndrome, all I could see were the problems. All I could think about were the challenges. All I could focus on was a terrible life where she was dangerously obese, tortured with hunger, friendless, unhappy, ill, and hurting.

And let’s not pretend that self-interest wasn’t part of that worry. Bound up tightly with my terrors about how PWS would affect her were fears of how it would impact on me, my family, our lives, our world. 

It was a natural human reaction. Of course there were genuine, hands-on, in-the-moment issues to worry about: the practicalities of feeding a floppy, weak baby; the hard work involved in helping her build up the strength to walk; the need - when the hunger kicked in - to distract and plan and cajole and be furtive. (Yep, we furted). There was - and always will be - plenty to contend with in the Now. So why couldn’t I stop loading up on the Later? I should have just dealt with what we had to deal with at the time, and only as far in the immediate future as was necessary. I shouldn’t have tied myself up in knots about nightmare scenarios in the distance. I was myopic about a distopian future that I was ridiculously sure was inevitable. I had tunnel vision about the path our lives would take, leading straight ahead and only straight ahead, to LOTWOP, the Land Of The Worst Outcome Possible.

And then I stopped. I don’t remember exactly when, but I took a little meander off the path and forgot about where I was convinced it was leading. And when I decided to do that, something amazing happened: I started properly enjoying my daughter. I started to focus on being with her, having fun with her, being amazed by her, being frustrated by her, laughing with her, and loving her.   

I was freed by the realisation that I can’t predict the future. (If I could, I would have bought shares in Apple in 1977, although that would have been difficult, seeing as I was only 6 years old. No-one has that power. Not even Yuri Geller, the spoon-bending numpty).

I suppose, what I’m trying to say, in my straying from the path kind of way, is that you might want to try it, too. Switch off the sat nav, have a potter about, and you’ll end up where you end up, but the difference is you’ll have more fun on the way.

My weak little baby girl is now 16 years old. Things aren’t perfect, and we don’t live in Cloud Cuckoo Land. Every now and again we hit that hard and narrow path, and the LOTWOP sign is still there, but there are a few others, too, pointing to other possible destinations. Parents of children with rare disabilities should know this more than most: anything can happen. And the anythings of life can be terrible or wonderful. We’ve had anythings of happiness that have given knockout punches to the anythings of despair, so stuff you, mapped out future nightmare world, stuff you.

Song is Idlewild - In Competition For The Worst Time

This post first appeared in the January edition of PWS News, the newsletter of the Prader-Willi Syndrome Association UK. They have a very informative website here.

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