Saturday, 9 July 2011


As far as I’m concerned, Dante got one of his circles of hell all wrong. I’m unilaterally replacing the third circle, Gluttony, (which, let’s face it, is a slap in the face for innocents with Prader-Willi Syndrome) with another. Henceforth it shall be known as the Wacky Warehouse Circle.

I appreciate that’s a brand name. It could just as easily be called the Circle of Adventureland, or Funworld, or Another Faceless Soulsucking Shed With A Few Cushions, A Million Plastic Balls, And The Smell Of Wee And Chips.

I’ve spent too many hours of my life in these places. When my daughter used to receive another birthday party invite to an indoor play area venue, I used to want to scrawl in red pen on the RSVP slip: “NO! SHE’S NOT EFFING COMING! I DON’T WANT TO SPEND ANOTHER THREE HOURS OF MY LIFE IN A SWEATY AIRCRAFT HANGER, LISTENING TO THE SOUNDS OF SCREAMING CHILDREN, ACCOMPANIED BY A PA SYSTEM PIPING HEART FM DOWN MY EARHOLE AND INTO MY BILE DUCT. Thanks.”

I never did, though. I always took her. And - here’s the crucial bit - always stayed. Gazing longingly at the other mums who got to dump their kids and sprint out of the door to freedom. Off they swanned, to eat caviar, go for a pedicure, and have sex, possibly all at once. While I remained.

The principal reason was to control what my daughter ate. This often involved bringing my own healthy versions of party food: a box of raisins to substitute for sweets, a low fat yoghurt instead of ice cream. Birthday parties tend not to be big on salad. And with Prader-Willi Syndrome, you’ve got to be on top of the food situation at all times and in all environments.

The other reason was that my daughter wasn’t as mobile as the other kids. So she’d haul herself up to the third floor of the soft play area, and then get stuck. And I’d have to clamber up to rescue her, wishing I’d not dodged so much salad as I squeezed through places I had no right to squeeze through.

These parties, in these places, were without fail, excruciating. But, I suppose, if I’m honest, if I had my time over again, I’d still go. Because in the end, they weren’t about me. They were about making my daughter happy.

Oh, and the enormous whisky I’d treat myself to to calm my nerves when we got home.

Video is Eels - Your Lucky Day In Hell


  1. I realise why - I've just discovered your blog for the International PWS Organisation (and put it in my Useful Links column, on the right). Some great insights.