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

No comments:

Post a Comment