Sunday, 29 June 2014


A little blush spread over her face when her name was called out. 

My daughter shyly accepted her medal and One Direction pencil set. The award was for being one of the best dancers at yesterday's Prader-Willi Syndrome Association UK South East Summer Bash. She should have dedicated it to her ear defenders, which she’d fished out of her dad’s toolbox to take along.

“I’m not dancing unless I wear them, because otherwise it will be too loud,” she announced. (‘Being too loud’ is a bit of a thing. This can sometimes be difficult in our household, where the default noise level is set somewhere between raucous and I-can’t-hear-myself-think).

So we took the DJ-like headgear, which had a positive effect on my daughter’s reticent dance floor moves. She wrung her hands with excitement, rocked gently from one foot to another, and even threw some small shapes.

I could bust some moves right now, thinking of her small-but-perfectly-formed wig-out. 

The event was the second PWSA family get-together we've attended in the space of a week. Things have been so hectic around here that I haven’t even had time to tell you about last Sunday’s PWSA picnic up in Manchester, where my girl was thrilled to discover that her PWS BFF had surprised her by making the long trip up (we'd cheated by spending the weekend with relatives who live nearby).     

I can sum both events up for you, though: I've never found it easier to talk to people about our wonky world. 

All these PWS tiddlers, middlers, teens, mums, dads, grandparents, and mates... this huge part of our life that is so abnormal to everyone else, isn't to them. 

Some of them have only jumped on the Wonky Bus recently, others are season ticket holders. We're all aboard, it's a bumpy road, and yes, on steep hills, I don't always trust the brakes. So why the hell shouldn't we ding the bell and park up for a party every now and again?

I've posted some photos from yesterday. I’d include some from last week, too, only my camera card had a meltdown. I don’t care - I can remember my girl smiling, just like yesterday, and that’ll do me.


  1. Great flowery dress Josie-i presume you all managed without caffine?!?! :)

  2. Yes. Just about! We met Roxy, Kerry and Catherine, too, which was great :-)