Monday, 12 October 2015


Is it wrong to...well... stalk someone else’s five year old boy just so he has more opportunities to cuddle me, give me a kiss on the cheek, and tell me he loves me with ‘all his heart’?

Am I wasting my time by seriously considering inventing an Anti-Fit hack to my Fitbit watch, and introducing a ‘Pro’ setting (standing for ‘Prosecco Consumption?)

Am I a bad person for wanting to refer to our lovely, but amusingly-monikered New Forest Holiday Park not by its actual name (Sandy Balls) but by my own, less polite version (‘Itchy Bollocks’)?

Was it my own silly fault that when taking a woolly gang of alpacas for a walk around the caravan park (yes, you heard right) I fell over a bin as I backed up trying to get a shot of them in The Beatles’ Abbey Road record cover formation?

Are alpacas even allowed to use a zebra crossing?

These questions are all burning ones. But the most flammable query on my mind today after returning from a weekend away in the company of a special tribe of special kids, special young people, and their special families, is this: Could we have had more fun?

It was our second Prader-Willi Syndrome Association UK family weekend. And the stress of the car journey (“Are we nearly there yet? It’s taking a BILLION years!”) melted away as we drove through the trees to our miniature home on wheels.

A quick warm-up and scoff of the ‘here’s one I made earlier’ meatballs and spaghetti tea,  and it was off to the Activities Room to meet the others. There were babies, toddlers, teenagers, adults, little ones that had grown since the last time we saw them, new faces, mums and dads and sisters and aunts and nans and grandads, and we had Maggie, Karen and Sharon from the PWSA UK, working hard to make us welcome and entertain the troops.

Events were spread over the two days for people to pick and choose and pop along to if they wished - and it seemed like everyone came to nearly everything. Walking the alpacas, with their 80s footballers’ perms, was the most surreal activity. Visiting a country park featured our most chaotic moment (when my daughter decided at the last minute to back out of the steam train ride, thus sparking a low level anxious rash of wavering PWS passenger refusals and readmissions). Making masks and decorating clay pumpkin lanterns provided the most data on how much felt tip my son could cover his face in. Likewise, the soft play area proved it is the most reliable way of making a small child sweat like a bastard. Swimming made my goggles mist up as I took in the sight of our motley crew of amazing children, paddling and splashing - some needing enough flotation devices to sail to America on, and others swimming freely.

A group of us met up for dinner in the restaurant, and my girl sat opposite a young man with PWS who tried to outdo her on the spice front in a Scotch Bonnet v Jalopeno Chilli Pepper face-off. (Neither even broke into a sweat).

Handsome little Clive politely gave out world class hugs (hence my aforementioned stalking). Beautiful little Polly told me solemnly how she had been “so looking forward” to holding my girls hand, promptly did so, and didn’t really let go. (I had to keep reminding my daughter that she was attached to a small person when she approached a gate or a door).

Our family won the quiz, principally because I brazenly cheated and asked friends on social media to identify a cartoon character that no-one could get. “Check the back of the paper for rules, and if there aren’t any, we can Google!” I told my daughter, imparting a valuable life lesson. ‘Sindbad’ (no, me neither) earned me a bottle of plonk, which my daughter strickenly dismissed as ‘a Mum prize’, so Maggie stepped in and gave her a doodle book, and all was well. 

Thank you, to the PWSA UK team for organising and running the weekend. Thank you to everyone who came and put a constant smile on my face (you see, no, it was not entirely down to hitting my Pro-secco targets with aplomb). 

Thank you for making my daughter happy. In life she is often different. Here she was alike. And she aliked it a lot.

Video is The Beatles - Abbey Road medley

Friday, 9 October 2015


He asked her at school.
She told me about it when she got home.
"Kevin says he wants to go on a date with me."
I put my poker face on. Which was hard, because I very nearly burst into tears. Good tears. 
"What did you say?"
"I said yes, but I'd have to ask my mum."
I was struck by a sudden thought.
"Do you know what a date is?"
"Er, no."
I explained.
"Well, if someone likes another person, they go on a date. It just means going somewhere nice together, like the cinema, or to a restaurant."
"So that means Kevin must like you. Do you like him?" I already knew the answer to this: she's had a soft spot for him for a while.
"I'll call his mum and we'll sort it out."
She beamed. I beamed. It was very beamworthy.

It's two days later. They've swapped mobile phone numbers (my girl got her first phone for her birthday last week). He calls her from his taxi that takes him to the special school class they both go to. They have faltering, repetitive conversations. He texted her and called her 'Sweetie'He asked if she wanted to be his girlfriend and, if so, why? She texted back: "Because nice."

I'm happy that she seems quite happy about all this. 


Because nice.

Sunday, 4 October 2015


My girl is 17 years old today. I knew this in advance, of course, but it still feels astonishing.

She’s ensconsed on the sofa watching Charlotte’s Web with her two sleepover friends. PWS BFF (Prader-Willi Syndrome Best Friend Forever) hasn’t seen it before, but she has just announced that “I know the spider dies”. ASC BB (After School Club Best Buddy) has yet to reveal any other spoilers.

We’ve already given my girl’s new Taylor Swift LP a spin on the turntable. The vinyl version of 1989 was top of her birthday list, thanks to a recent sudden fascination with our own record collection. I’m quite happy with her choice; it’s a hell of an improvement from last year’s musical favourites, One Direction. 

Other presents include a Thomas The Tank Engine Story Collection and a mobile phone, which kind of says everything about the idiosyncracies of our amazing, anomalous daughter.

The two PWS girls have been in food heaven, with some carefully managed treats: they demolished some healthy chicken tikka in the curry hut last night (whilst my son overdosed on not-so-healthy mango chutney). We took over the restaurant: there were 14 of us, including my mum and dad, and a couple of LOTIWTSW (Lovable Old Trouts I Went To School With), their other halfs and offspring. No-sugar ginger beer was drunk, candles on the cake were blown out, and slices of spongy Minion Dave cake were substituted with Weightwatchers caramel cake bars.

The girls conked out on their airbeds in my daughter’s room at around 10.30pm last night. My boy, filled to the brim with poppadoms, didn’t even attempt to bother them. Impeccable behaviour at home from him is so unusual that I can confirm we saw flying pigs in the night sky, soaring above a hell that had, indeed, frozen over.

It was a perfect evening, apart from England crashing out of the Rugby World Cup. Mind you, perversely, even that sporting disaster made us smile: the kids had taken over the telly for an after-curry film showing, so us adults were huddled around my computer watching the game. After the second Australia try, my husband stomped off to join the girls in the other room with the immortal words: “Bugger this! I’ve had enough. I’m going to watch Cinderella!”

Song is The Beattle-Ettes - Only Seventeen