My daughter is fast asleep next to me. Our girly road trip to the Prader-Willi Syndrome Association UK National Conference is proving as enjoyable and exhausting as I envisaged.
Today was the first day of the conference, which consisted of a whirlwind of quick chats with old friends and new faces, a small amount of cooing over apple-cheeked babies, and a portion of teary wonder at the sight of an amazing PWS girl talking about her job working with a disability charity. In between were workshops and lectures on research, behaviour, medical and dietary issues, feeelings of guilt along the lines of: "Oh God, I should be doing THIS!", alleviated by feelings of relief along the lines of: "Actually, it's perfectly OK that we're doing THIS!" While all this was going on, my girl was shyly proud of herself for 'helping with the little ones' during the day's programme of events for PWS children. She and her Prader-Willi Syndrome Best Friend Forever (PWS BFF) were honorary volunteers for the day (which as far as I can gather consisted of joining in all the activities whilst wearing an association T-shirt, but hey, they were 'working', OK?).
Co-ordinating adjacent hotel rooms with PWS BFF and family proved to be a minor stroke of genius, as it allowed the two special-peas-in-a-pod teenagers to play Hello Kitty Yahtzee yesterday, and to watch Eastenders on the iPlayer tonight. And beam at eachother.
Two observations about Eastenders:
1) The last time I watched it, about 25 years ago, there was some skinny, ginger girl shouting a lot. I found out tonight that the same, skinny ginger girl, now a woman, was still shouting. No sign of Mary the punk, though.
2) Me and PWS BFF's mum, after drinking a couple of mugs full of Prosecco that had been nicely chilled in a Travelodge bathful of cold water, were pontificating about why the programme seems to fascinate our girls. I think I actually used the pretentious phrase: "It's a kind of a pantomime of social interaction." This amateur psychologists' babble balloon was swiftly burst by asking the girls directly why they liked it. One said: "Because of the shouting," and the other: "It's the swearing."
Tired, but happy, before retiring to her room for the night, PWS BFF checked 15 times with me that we would definitely be meeting up at 8am tomorrow in the Little Chef for porridge, just like we did today. My daughter then checked 16 times that my confirmations of the confirmation were confirmed.
Hopefully PWS BFF's dad won't lock her hotel key inside the room like he did this morning. And hopefully I won't be put at the front of a convoy of cars going to the restaurant for tea, blindly follow the sat nav instructions, and end up taking everyone needlessly up to the next motorway junction, only to drive practically all the way back to where we started, like I did this evening. That would be stupid.