Friday, 10 May 2019

Crust

It's Prader-Willi Awareness Month, so today I was going to tell you informative, medical, scientifcular stuff about my daughter.

But then, as I sat here on my sofa, curled up with a glass of whisky - don't judge me, I deserve one - I had a little moment of awareness myself.

I'd spent most of my day in the hospital having a plaster cast cut off, the wires in my broken finger checked, and being fitted with weird moulded splints by an impressively able but overworked hand therapist. (If you're feeling any sympathy, don't; I decided at the eleventh hour the other week to play in a rugby tournament when I should have been resting my dodgy knee. I survived without a knee injury but got my finger smashed up instead. I am 47 years old, and my coach says I am a 'legend' and a 'bell-end'). 

Time was ticking on, and as my other half drove me back home, I glanced worridly at the dashboard clock, willing the traffic to clear so we could be there when my daughter's college transport dropped her off on our doorstep. 

At the back of my mind was that horrible voice that nags at me sometimes: "Your daughter is 20. If she didn't have Prader-Willi Syndrome, this wouldn't even be an issue. Hell, she'd probably be taxi-ing you home herself. Life would be so much EASIER." It's a mean, snidey voice, sharp with jealousy and self-pity.


And then I get this text from my girl: 


",mum have you got a new crust". 

And everything is OK again. The nasty voice has gone, and the other voice is there. The smiley one. The one that breaks through the clouds: "Your daughter is 20. When she was born, and the outlook seemed so bleak, you wouldn't have dreamed that the little girl with floppy muscles who couldn't walk or talk would be sitting on her college bus, texting you. Life is amazing. Her spelling is shite, but still. AMAZING."


Awareness isn't always about me trying to educate other people. It's also about me being aware of how far she's come.



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.



Song is Hank Ballard & The Midnighters - Finger Poppin' Time

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