Inked

The day finally came. D-Day. Or more precisely P in a D-Day.

After years of insistent lobbying, and following a dramatic alcohol-fuelled New Year’s Eve capitulation on my part, my daughter now sports a pug in a donut tattoo.

I know I said it was a monstrosity. I know I said I’d rather buy her a real doughnut and a real dog before I agreed to her having this inked on her forever. I know. (Incidentally, we do now have a dog, although it’s a labrador and not a pug, but that’s another story).

But I realised that, for once, my girl with Prader-Willi Syndrome, the rare chromosome disorder that shapes and dictates so much of her life, deserved a choice. Something of her own. Something that made her beam with happiness. And trust me - she’s beaming.

The kindness of strangers never fails to smoothe the world’s sharp edges. Tattooist Pete charmed by my daughter’s anxious excitement, came in on his day off to painstakingly paint the pugnacious creation. 

He gave her a special price, for a special girl, for her special birthday (it’s an early 21st present). And he listened and chatted and explained as she quizzed him, told him random plotlines from Emmerdale, repeated how she was “obsessed with pugs” over and over again, but didn’t moan once - in three hours - about any discomfort. This wasn’t a surprise; PWS comes with a high pain threshold, but I’m sure her stubbornness and determination would have carried her through anyway.  

Something quite magical happened; as I watched the design take shape, it changed. It was copied from the original screengrab, and was still - very definitely - a pug in a doughnut. In my head it wasn’t what I would have chosen. But as the happiness radiated from my daughter, and Pete and the other tattooists’ delighted in her delight, my head took a back seat to my heart. It was perfect. It was my girl’s silly, sprinkled, singular choice. It was her.  

Oh, and did I mention? I got tattooed too.

Song is Carter USM - Let's Get Tattoos

We've been helped hugely over the years by the PWSA UK (Prader-Willi Syndrome UK) - an amazing charity who do tremendous work supporting people with PWS, their families, and professionals who work with them. To find out more about the condition and the charity click here .  If you can spare a few quid please click on the Donate Now button on the right hand side of their home page.

Colette

My daughter’s cinematic tastes are complicated, sometimes rigidly rule-based, and at other times capricious.

Despite loving all the Pixar films when she was younger, she now flatly refuses to watch any Disney animated feature, although live action Disney is acceptable. And, as you can imagine, the live action/animation mix of Mary Poppins Returns was VERY DIFFICULT TO DECIDE ABOUT.

Every other Saturday, my girl goes out with a small group of other young people/adults with disabilities, usually for a coffee and a cinema visit. She doesn’t always get to choose the film, which can cause problems, and this Saturday she came home a little disappointed after sitting through Aquaman. (Apparently, according the reviews, it’s a bit of a day-glow mess of a movie. Although it has got the 6ft4in tall redeeming feature of chunky man beast Jason Momoa in it, so it can’t be all bad).

“Mum, I didn’t want to see it. I really want to see Colette. I saw a trailer and it looked good.”

I vaguely recalled reading reviews of the film - an historical biopic of its titular French writer and performer. Words like ‘gender fluid’ and ‘kinky’ had come up.

I checked it out on the BBFC website, and decided my daughter could handle a few scenes of nudity and sex, so I agreed to take her to the cinema to see it today after college.

I gave her a pre-screening warning of: “It’s got some rude bits in it.”

“That’s OK. I can cope,” she deadpanned. (I wondered if I would be able to).

Two hours later she had proved that she could cope. She asked no questions throughout the screening, despite the intricacies of a plot - most of which must have sailed over her head - including elements such as: ghost-writing; the selling off of publication rights; intellectual awakenings; gender politics; and a selection of marital, extra-marital, lesbian, and mildly fetishistic, sex scenes.

“I really like that. It was brilliant,” she said, beaming.

There was one thing, you see, that I haven’t mentioned. Keira Knightley (Colette), had a secret weapon to ensure my daughter’s undying attention. It only appeared in a couple of scenes, but it was enough to make my girl shake with excitement and remain rapt throughout.

She had a pug.

Song is Ed Harcourt - Ghostwriter

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