Sunday, 14 September 2014


I  wrapped my arms around her and squeezed, gently.  A little wave of emotion had drenched her, and she was sobbing, into my chest. To be fair, my chest is large enough to comfortably accommodate several sobbers at once. Anyone’s welcome, I don’t discriminate. 

But I wasn’t concerned. My daughter needed just a minute or two for the wave to subside, for the tide to go out, and for her feelings to dry off. Her emotions had overwhelmed her. A fact that was hardly surprising, considering the weekend she’d had: two nights in a hotel, two days of activities with other PWS children and young adults, two PWS picnic dinners, two evening meals out, a bagful of cuddly toys won on the pub’s ‘grabber' machine, oodles of crafts, a game of bingo, two lots of dance workshops, and an entire weekend buddying up with her Prader-Willi Syndrome Best Friend Forever.

It did subside, quickly, and easily. She was right as rain by the time we drove out of the conference centre gates. Three hours later, after a tactical Maccy D tea stop (grilled chicken salad wrap - 330 calories, and pineapple stick - 37 calories), we were home. Low-fat hot choc slurped, tablet swallowed, teeth cleaned, retainers in, jim jams on, bed.

The packed weekend was the PWSA UK's first national conference for seven years. The event, in Derby, was spread out over two days, concentrating on under 16s yesterday and focusing on over 16s today. The Association subsidised conference fees to try to make it more affordable for parents and carers, although as a charity, its funds are limited. 

I really hope they make it a regular event.

It can be daunting, especially for new parents, to hear some of the tougher topics and scarier stories from professionals, carers, and other mums and dads, even when it's emphasised that symptoms and behaviours can vary wildly from child to child. It can be repetitive, when speakers tell you things you’re already very familiar with. Not every talk turns out to address the issues you were hoping they’d cover. At certain points, you might even begin to understand what a PWS emotional overload might feel like.

But there is always something that resonates. There’s always something that surprises. I found Medical And Dietary Issues advice from a team from a PWS multi-disciplinary clinic (God, how I wish there were more of those) to give me plenty of *ahem* 'food for thought'. PWS BFF’s mum said the Changes to SEN Education And The Law session was hugely useful. I’m sure everyone there took away something; nuggets of information, little treasures, lightbulb moments, ideas, practices, realisations, recognition, revelations. 

And there's always something funny: the mum who went into the adjacent bible conference by mistake, and dashed out pretty sharpish when they started talking about Psalm 24 instead of Chromosome 15; our theory that said bible class (99% female) looked remarkably like the evil WI convention from the film of Roald Dahl's The Witches; and the idea that the catering staff, decked out in old-fashioned black and white uniforms, were actually dinner ladies from the 1950s transported through time to serve us up our gravy. 

As the day came to an end, a few parents and other Prader-Willi teenagers and young adults, walking past us on their way out, noticed my daughter finishing up with her aforementioned 'it'salltoomuchforme' weeping session. One lad picked up her Froggy soft toy, and patted her back. A couple of people caught my eye and smiled back at me when I smiled at them, as my daughter’s tears wet my shirt, and her face continued to crumple and leak. They didn't think me callous for seemingly not looking overly concerned at my distraught child. I knew that they knew that it would pass and be forgotten about as quickly as it had started. They got it. They got her. They got us.

I know I always bang on about it, but I’m more convinced of it with every PWSA event that I attend: being there, being together, seeing so many people sailing the same ocean on the same wonky, wobbly raft as you, is special. Some of them will encounter choppier waters, some calmer. But knowing they’re there, bobbing along beside you, makes a huge difference. We can set off flare guns and chuck each other life-belts if needed. 

Knowledge arms us. We’re a goddamn flotilla.

Song is The Waterboys - Strange Boat


  1. Love this post. Love your blog. Spot on, as always xx

  2. A wonderful post showing how together we are all better. Thank you.