Friday, 31 May 2019

Roca


A trait that almost all people with Prader-Willi Syndrome share is stubbornness. Proper, full-on, foot-down, unshiftable, unshakeable, granite-set stubbornness. 


It can make life hugely difficult. 

When my daughter has an idea stuck in her head, stuff that’s supposed to happen, ways of doing things that cannot be deviated from, she is about as stubborn as it’s possible to be. She can’t adapt easily. She can’t be flexible. She can’t wing it.

But - and oh, that ‘but’ word can sometimes bring beauty and comfort - her stubbornness can occasionally produce something amazing. 

Sometimes it makes her climb mountains.

I say mountains, when what I’m actually talking about is a rock. A great big rock in Spain. Calpe Rock is a big, huge, sticky-up thing that takes an age to scale. (I say scale, I mean trudge along the zig-zaggy, rocky paths until you get to a tunnel marking the beginning of the much steeper last third, and realise it just ain’t gonna happen in flip-flops).


We were on holiday with my brother and sister-in-law, who live just a few miles from Calpe Sticky-Up Thingy, and my girl had decided she would make it all the way up to the tunnel. It was a hot, hard, route, and as I flip-flopped my way ahead to try and keep my mountain goat son in view, I was convinced my daughter would never make it that far. 

I was wrong. Out of the blue and pretty in pink, she clutched her dad’s hand, and walked and walked and walked without complaining. 

Her muscles are weak, her gait and balance is wobbly, her stamina is poor. But she’d told her Aunty Jill she was going to do it, and by ‘eck, that meant she would do it. 

She did.
She rocks.
She was so tired she had a siesta that resembled a mild coma.

My stubborn girl.



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.


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