Tuesday, 25 March 2014


This might be the exact moment my daughter concluded she could wrap her dad round her little finger.

There’s a note of triumph to her expression, don’t you think?

You’d be forgiven for thinking the big fella would do anything for the little girl. Hell, she definitely looks like she’s thinking it. But she was wrong. He dotes, but he’s no dope.

It’s axis-shifting, the moment you’re told your child isn’t 'perfect'. Everything goes a bit skewy. You have to establish some sort of framework, some foundation to work around, build on, and hang on to. It takes a long time to realise that your world can work, it just spins differently to other people’s. And you have to grip on a bit tighter.

There are Rules. Big ones. With Prader-Willi Syndrome, most of The Rules revolve around food, and keeping mealtimes rigid, not allowing extra snacks, sticking to The Plan as much as is humanly possible. There are some requests you’d love to say: “Just this once,” to, but you can’t. There are some things you can’t give in on. Our girl has to have a limited, low-fat diet, in order to maintain a healthy weight. That means saying no. And it’s involved her learning that no means no and that it’s because we love her that we have to say it.

We’ve had fifteen years of spinning since this photo was taken. We’re still gripping. He’s still doting, and not giving in. The revolutions have been fast and furious, slow and smooth, and all trajectories in between. All we have to continue to do is make like Torvill & Dean, and keep snapping our heads round quickly as we pirouette, to avoid getting too dizzy. 

And now I have an image of my husband and me in lycra doing Bolero. 
I’m just off to bleach my eyes.

Video is The Hold Steady - Spinners

Sunday, 23 March 2014


I’m all activitied out.

My daughter was so determined to try every single bit of organised fun on offer at the church fun day today, that she even had me sewing. I have the amputated legs of stuffed sock monkey to prove it. (Not only did we fail to reach the torso area, we didn’t even get round to sewing up the groin, which means the level of stuffing fallout in my handbag has reached nuclear winter proportions).
She painted, potted, footballed, bouncy castled, flower-arranged, badged, sang, and danced. Her brother showed an equal amount of enthusiasm for most of the above, but unlike her he flagged when it got to the show at the end, which involved audience participation of the happy clappy variety. The “One more song!” announcement saw him pop up above the pew like a startled meerkat, and yell: “Not ANOTHER one!”

In one of those odd reversals of the natural order of things, it was the non-Prader-Willi-Syndrome boy who was wriggling and squirming in his seat, pleading for teatime. My PWS girl, who never feels full up, and has to have her meals at regimented, pre-determined times, was so captivated by the activities, so pleased to be taking part, so distracted, diverted and charmed, that she didn’t even clock that tea was late.

I’m not religious. But it’s kind of a minor miracle.

Song is The Shirelles - Last Minute Miracle
Thanks to Eve Studio Pottery for the help throwing pots. Which instruction, luckily, my boy didn't take literally...

Monday, 17 March 2014


It's a glitter globe, apparently. My daughter made it at school, and is very proud of it. 

I'm displaying it alongside an earlier, nightmare-inducing artwork of hers: the papier maché copy she fashioned of her own headMy kitchen shelf now looks like something from a League Of Gentlemen Christmas Special.

I'm calling this one: "Oh my God, she drowned the pony."

Song is James Carr - Pouring Water On A Drowning Man

Sunday, 16 March 2014


When the dentist informed our daughter her teeth would need straightening, we braced for impact.

She hated the idea. We had long, long talks before her braces were fitted, where I explained why it was necessary and how she’d get used to it. It didn't seem to soften her resistance. And of course, we suspected from the start that the obsessional nature of our daughter’s Prader-Willi Syndrome would make the process more difficult.

We were right. Three days after her top brace was fitted, she completely dismantled the metalwork during the night, and I ended up taking her to A & E* (*see previous entry Scrap).

But after this Gonzo Audition For Scrapwork Challenge kind of start, things calmed down. She accepted the fitting of a bottom brace, the installation of slightly different style braces at later appointments, and even the joys of elastic bands at night during the final couple of months of treatment.

And this week, after only nine months instead of the expected year, her teeth were freed. They were let off for good behaviour. The scaffolding came off, and the previously higgledy piggledy gnashers were revealed: neat, tidy, and straight, having paid their debt to society for their previous waywardness.

“I liked my braces, Mum,” my girl said to me. The one who’d initially said: “No thank you, I’m not interested,” when the dentist first mentioned the plan. The girl who’d ripped out the Mark 1 model. The one who hated her food getting stuck in between the metalwork.

“It’s a shame they had to come out.”

Song is Diana Ross - I'm Coming Out

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Monday, 10 March 2014


This blog has now had more than 100,000 views.

I’m pretty chuffed with that.

Here’s a rather splendid, numerically appropriate track: Spearhead - 100,000 Miles. Lead singer Michael Franti tells how his ‘Gramma’ said to him: “You have the patience of ice on a sidewalk”.  The only really memorable phrase I can offer from my long-gone, irascible ‘Gramma’ (or ‘Nanna’ as she was known) was the very last thing she said to me before she died: "Huh, I don’t know why you bothered coming.”  

Well, thank you, everyone for bothering to come here. Everyone, apart from those of you who arrived after typing in very dubious-sounding search terms - you can f**k right off.

Track is Spearhead - 100,000 Miles

Friday, 7 March 2014


I started off doing the Crazy Crab and the Travelling Chicken with her, jealously eyeing up her maracas. (Gravity-induced diminishing pertness has meant it’s been a while since anyone jealously eyed up my maracas, but I digress...)

Before long, however, I just stood back and watched, amazed at the astonishing effect
Miranda Hart’s Maracattack workout DVD was having on my daughter.

Prader-Willi Syndrome means it’s hard for her body to convert fat to muscle, so she has poor muscle-tone. It means she has to be on a strict low fat, healthy eating regime, despite being hungry all the time. And it means she needs to exercise, despite not really liking the idea of ‘exercise’ very much at all.

This DVD, starring the tall and bumbling Miranda (whose slapstick TV show my girl finds very funny), turned all that upside down. The music began, and my daughter was off, in maraca heaven, shake shake shaking her thang.

She completed the 10 minute warm-up, and I took her jumper off, as she was actually putting some real oomph into it and looking a little flushed, a rare occurence when it comes to physical exercise, when her default setting is usually ‘amble’.

Then, for 20 minutes, she enthusiastically copied the workout routine, kicking her legs, circling her arms, hopping around, and giggling at Miranda’s silly comments, crabbing and chickening for all she was worth.


Video is The Rolling Stones - Jumpin' Jack Flash