Sunday, 31 March 2019


It was a day with all of the feelings.

I’m not talking about my daughter, and the cascades and surges of emotion that her Prader-Willi Syndrome lets loose. (Although we had this, of course. The clocks went back, for God’s sake, what did you expect?  If your answer was: ‘1001 questions about the intangible concept of time, expressed in mainly low level panic about having had to get up TOO EARLY’, then you are correct! If you’re interested, my daughter’s other topics of panic for today were her losing a tupperware pot at college in the week, and needing EXACTLY the same pot for her packed lunch TOMORROW, plus a whole whack-a-mole pop-up set of worries about a forthcoming residential trip).

No, it wasn’t just her battling with all of the feelings, it was me, too. And it was all about what was missing.

Today was a day that I’d told myself didn’t matter and didn’t mean anything different from any other, but it did. It was Mothers’ Day. 

It’s the first without my mum. She died last August.

It was the first without my mum-in-law, who died two weeks ago.

I kept busy. The morning was spent helping coach the U10s at minis rugby, where my son actually agreed to join me and join in, whilst my girl sat in the clubhouse, doing word searches, as good as gold. The afternoon was spent dealing with the fallout from my daughter's clocks and pots and trip meltdowns, then popping to the cemetery to spend a quiet minute or two at Mum’s grave. I walked through the gate to be hit firstly by the glorious burst of colour from the fresh flowers that seemed to be everywhere, and secondly by the realisation that nearly every bouquet was for other missing mums.

I cooked a roast for my dad. Eyed up two empty chairs. Two ropey, battered, faux leather dining table chairs that were snugly tucked in against the wall, because we hadn’t had to pull the table out like normal, because the new normal is two missing mums.

The new normal still feels like an upside down world. But an upside down moment saved it.

My girl presented me with a keyring she’d made at college. It has a winged heart and some letter beads spelling out ‘mum’.  Or rather ‘mnm’. I flipped it over a few times, and twizzled the u bead round, but she’d put it on the wrong way. 

It can’t be fixed. It’s beautiful. It’s imperfect. It’s my girl. 

Song is Jesus & Mary Chain - Upside Down

Tuesday, 15 January 2019


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

Related posts: Pug