My daughter is not one thing. She is not defined by Prader-Willi Syndrome; it is a huge part of her life but it isn’t everything.
When I write about my girl, more often than not, I focus on the positive. It’s how I deal with life in general - get through the bad stuff and enjoy the good.
But it does mean that sometimes people don’t quite realise that PWS can be a bitch. The first photo doesn't look like my daughter, the second does. They're both her. It's just that in one, she's been bitch-slapped.
Having PWS means my daughter has random, anxiety-induced meltdowns that she cannot be talked out of, reasoned with, or distracted from. People with PWS are emotionally immature and can often be overwhelmed by their feelings, which they struggle to control.
When my girl gets swamped by a wave of emotion it soaks me, too. I sit next to her, unable to ease her distress, even though I know the flash flood will recede and she’ll be smiling her amazing smile again, sometimes after five minutes, sometimes not for a couple of hours, and sometimes not until she’s had a good night’s sleep.
There are people who’ve known my daughter all her life who have never seen this happen. It’s difficult and gut-wrenching, and yet, like an awful lot of weird and sometimes not so wonderful things you deal with when you have PWS in your life, you get used to it. Even though you want to slap the PWS bitch right back, you get used to it.
May is Prader-Willi Syndrome Awareness month and it’s something people should be aware of.
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 and if you can spare a few quid then click on the Donate Now button on the right hand side of their home page.
Video is Talking Heads - Swamp