There was something delicious about the gift my daughter proudly presented her dad with for Fathers’ Day today.
This is the girl with Prader-Willi Syndrome, a condition which means she never feels physically full up but has to be on a strict diet. The present, bought from a school sale, and of her own choosing, was a book. It featured recipes like a banana dessert involving six tablespoons of butter and brown sugar and was entitled: “Eat Your Way To Success, Fame & Fortune.”
She gave it to her dad at lunchtime, as she’d only just returned from a return sleepover at her PWS BFF’s house. She’d been treated to a healthy low-fat tea, a low-calorie popcorn evening treat, and a fruit-heavy breakfast, with no “Eat Your Way To Type Two Diabetes” meals involved. Because PWS BFF’s mum doesn’t have to be told about the food thing, obviously. Prior to the visit, they'd partaken in email correspondence about what film they'd watch. PWS BFF had sent the following message:
"Please could you bring ladybirds game saturday to my house in case we want to play . Here are the film Choices that we can watch. 1. Miranda 2. One driection this is us 3. Katy perry part of me 4. Peter pan Tell me what you want to watch." Followed, a minute later, by a panic-stricken caveat:
"Not Katy perry. Dont choose that one"
I got edited highlights of the visit. The menu was, of course, top of the “What I Liked Best About My Sleepover” list. Food is top of “What I Liked Best About Anything” lists. But taking her friend's dogs for a walk ran it a close second, as did playing games, and watchingMiranda. But NOT Katy Perry. Sod her. They'd also taken great delight in showing eachother their books.
“We read my ‘You Are Special’ book I took, Mum,” my daughter told me, eyebrows raised with high excitement. “I knew she’d like it. She said: ‘Why am I special?’, because she’d forgotten for a minute, but I told her having Prader-Willi makes you special. She is special, like me.”
I’d sent a text to PWS BFF’s Mum earlier this morning, warning her that my girl tends to take her retainers out of her mouth and instead of putting them neatly away in their box, drops them wherever she happens to be, which can prove tricky, as the blasted things are transparent. The reply came back almost immediately: ‘Many giggles from them today as they played ‘Hunt The Retainer’.
And it was the chuckles that were mentioned again when PWS BFF’s dad dropped my daughter home after her night with her friend. “I don’t remember hearing my girl laugh so much,” he said.
“Whatever you do, don’t turn on your windscreen wipers. He’ll snap them off if he sees them move,” I warned my friend Jo.
The monkey, who’d already broken the aerial of the car in front of us, was now warming his behind on the bonnet of her car as we edged along through the primate section of Woburn Safari Park. He turned, spotting the kids munching their sandwiches in the back seats, and pressed his nose against the windscreen, licking his lips. “Quick, lean forward and I’ll take a picture of your face next to the monkey’s,” I instructed, and Jo grinned, moved her head, and somehow managed to set off both the windscreen wipers AND the water squirter with her ear.
I started giggling uncontrollably at her horror-stricken face as the damp ape stared at her in surprise. She scrabbled to turn off the wipers on her car. (Did I mention it was her new car, which she’d only had three weeks?) Luckily, the now spiky-haired monkey took the water-cannoning in good grace. He raised a weary eyebrow, shook his fur, and hopped onto the roof, settling down on the sun roof directly above me. There followed a brief moment of excitement as my five-year-old son yelled with unambiguous glee: “That monkey is going to have a poo out of its BUTT right onto your HEAD.” Being told that poo cannot travel through glass seemed to greatly disappoint him.
And so it was, as I sat in the shade of a monkey’s butt, that we returned to the main debate that had been raging in the back seat for the previous half an hour. “I want to go HOME,” my boy announced, for the umpteenth time. (He’d been very excited about seeing Jo’s son, his little mate Magnus, who was sitting next to him. Magnus was slightly perplexed by his friend's lack of enthusiasm for the tigers, wolves, elephants, giraffes, and rhinos we’d already seen, but he didn’t realise what I did: my son had got into his head that he’d be playing at Magnus’s house, not going out on a trip. Home actually meant his friend’s house). “I want to go HOME. I don’t want to go to the ZOO," he demanded. My daughter stepped in, again: “We can’t go home. We are at WOBURN SAFARI PARK. We are at WOBURN SAFARI PARK having a nice time at WOBURN SAFARI PARK!” Her Prader-Willi Syndrome habit of repeating herself over and over again was being given a good run for its money by my non-PWS son’s stubborn impatience, and she was obviously taking it as a personal challenge.
I caught Jo’s eye. “This is what visiting places is like with these two is like,” I explained. “He gets bored quickly and wants to go somewhere else and run around. And she starts to worry that we'll leave, and reassures herself by saying the name of where we are a hundred times.”
