The ear defenders were on before we got out of the car, despite the fact the flying display wasn’t due to start for another hour.
“I don’t like loud noises, do I?” my daughter said, verging on a mild shout, because her hearing was muffled.
Thanks to a friend, we’d scored some free tickets to a military pageant airshow at a local airfield.
As with all outings with a Prader-Willi Syndrome participant, grub was sorted first, with a picnic served as soon as we’d staked out our pitch behind a fence next to the grassy runway.
Then, after spending way too long cack-handedly working out how to tie an umbrella to a beach chair to provide some shade for my girl on a blazingly sunny day, we sat back to watch the planes soar overhead.
My daughter’s anxiety levels were at a low hum, with minor issues including any suspected presence of a buzzy insect within 10 feet of her, a sore eye from some wayward sun cream, and a potential but averted crisis over a change of mind about the choice of ice lolly from Calyppo to Twister.
But we piloted her. Subtle rudder changes. The odd little steering adjustment. She sat and chatted loudly, watched the planes loop the loop, wrung her hands and fiddled with her fiddler, sipped a capuccino, had a micro nap, enquired if we’d be home for ‘normal tea time’, and grinned, a lot.
Meanwhile my friend and I invented a new type of human cooling system (ice packs down the cleavage, henceforth to be referred to as a Tit Fridge).
There is nothing quite like a British summer picnic in the rain.
Pitching a gazebo in the wind, weighting down your rug so it doesn’t flap and fly away, huddling in your fold-up chair, warming your hands on your thermos flask, all whilst wearing that defiant combination of a fleece and sandals.
We braved it. Twice. Two days, two outdoor Fun Days, two picnics, two sessions of umbrella juggling, and two large helpings of laughs.
Saturday’s function was a school summer fayre (which was at a posh private school, so included a proper stage with a pretty decent sound system and lighting). The music and dance acts included ex-pupils who had gone on to appear in the West End, a rubbish blues band and a Robbie Williams tribute act. The Fake That fella was cocky, hyperactive, and sang in a cheesy, fake-accented pub-singer style. So, pretty convincing then.
My daughter took one look, and pronounced: “He doesn’t look like him.” She has a way with a pithy review. To illustrate her point, she drew a picture of what Robbie ‘Wimmlomams’ actually looks like. I think that’s the microphone he’s patting, and not a little Gary Barlow.
Sunday was the main attraction, though. This was the Prader Willi Syndrome Association Family Day at Heaton Park, Manchester. An informal outdoor get-together organised by the PWSA (UK) where families could meet and chat and the kids could play games and have a picnic (the food bit came early on, obviously, what with it always being the most important part of the day for the grub-obsessed PWS children).
We’ve been to one of these events before (see blog entry Picnic). And like before, when I met the children, who ranged in age and ability, I was acutely aware of both their uncanny similarities and their striking differences. Just like any bunch of kids.
My girl, of course, loved it. She sat, grinning, looking shyly at the other PWS children. I walked her round with her notepad, and she took a register, asking the boys and girls their names and ages. This was as much for my benefit as for hers, as I knew she’d be questioning me for weeks afterwards about who was called what and how old they were. In retrospect, we should also have got shoe-sizes and number of teeth, as these are her other Important Facts To Know About People. What was I thinking?
As the day progressed, I noticed that my daughter keep ostentatiously putting her Hannah Montana book in her bag and getting it back out to read, looking round her as she did. I realised that she was aware she was the oldest, and was showing off.
“Am I the best reader, Mum?” she asked.
“Well, yes, you probably are, sweetheart. You’re a teenager and you’ve been at school much longer than anyone else here, so you’ve had more time to learn.”
“So I’m the best, then.”
“Yes.”
She looked proud, and smug.
As we walked back to the car, I asked her what she had liked the most. She said that it was seeing Will again, an adorable boy with PWS she’d had made friends with on an earlier trip up north (see blog entry Links). This time, they’d played boules together and Will hadn’t stopped beaming all afternoon.
A bunch of strangers met in a park today and had a picnic.
It was a small, informal get-together at Hainault Forest Country Park, near Chigwell, organised by PWSA (The Prader-Willi Syndrome Association UK).
Our children played together, had a sing-song, did the hokey-cokey, and had their faces painted. Blow up guitars were strummed. Sparkly microphones were mimed into. Grins were grinned.
My daughter joined in the fun, her initial shyness melting into enthusiasm, as she managed to put me to shame with her firm grasp of the lyrics of “This old man, he played one...”
She had been looking forward to this for weeks, and it wasn’t long before she was asking any child that stepped within a five yard radius of her: a) whether they had PWS and b) how old they were.
My girl was fascinated to see that some children were: taller/shorter; slimmer/chubbier; chattier/quieter; friendlier/shyer than her. Some were in wheelchairs, some were skipping around. It was the first time she’d seen as many people with PWS in one place (I think, if I counted right, there were eight). They were, of course, as different as they were alike.
She's all tucked up in bed now: her face-paint washed off and the excitement over. In the brief few seconds between my shattered girl's head hitting the pillow and her being out for the count, I asked her what the best bit of the day had been. She told me, of course, that it was the picnic. (Food comes first - it always will). But then she said her "equal" best bit was having a big cuddle with a baby girl with Prader-Willi who kept smiling at her (see the picture above).
I think my daughter found the whole day kind of amazing.
I did, too.
Video is Sam & Dave - I Thank You, dedicated to Patsy Counsell and all the other lovely people who organised today's event.
The ear defenders were on before we got out of the car, despite the fact the flying display wasn’t due to start for another hour.
Thanks to a friend, we’d scored some free tickets to a military pageant airshow at a local airfield.
But we piloted her. Subtle rudder changes. The odd little steering adjustment.
Meanwhile my friend and I invented a new type of human cooling system (ice packs down the cleavage, henceforth to be referred to as a Tit Fridge).
