She’s come a long way since she was a little scrap in special care, struggling to feed.
We were lost and the future was terrifying. As she grew stronger, so did we. Every milestone reached bolstered our souls.
I remember strapping her leg splints on, to help strengthen her muscles. Signing to her for months until she finally signed back and made her first sound, her first words. Pimping her walking frame with furry dice to impress the gang at playgroup. Clutching her hand on her first day at school. Waiting for hours as surgeons fused her spine. Grinning as she bottle fed her baby brother.
Time has marched on just as my daughter has marched through life, with a wobbly walk, and some trips and falls along the way.
Twenty-one years is a long time, but it feels like a snap of the fingers. She’s at college. She’s got a tattoo. But she’s still that smily, sweet, stubborn star. I still wish she didn’t have to deal with everything that PWS overloads her with, but I know that she is who she is partly because of it, and she’s amazing. She’s 21.
Song is Snap Your Fingers - Joe Henderson.
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.