Prepare yourself for a push and a shove. This week is Prader-Willi Syndrome Association (UK)’s PWS Awareness Week.
Families of children and adults with PWS have been talking about the rare chromosome disorder in their workplaces, at schools, and all over social media, in an effort to raise its profile. Lots of people have gone to a lot of effort organising a variety fundraising events, and they should be saluted.
But I am not skydiving. I’m not going to bungee jump. I’m not baking, dieting, being silent, walking, running, or trekking along the Great Wall Of China. I’m not making a Just Giving Page. I’m not setting a target and I’m not drawing a thermometer. I do not want you to sponsor me.
All I’ve done this week is write a blog entry a day instead of one week or so, like I usually do.
I really am a right lazy arse.
But here’s the thing. If you’re reading this, it means you probably park your arse on my lazy arse blog every now and again. So I’m just asking for a little favour. An annoying Public Radio kind of cash-based favour. Yes, you are being chugged*. (*This means Charity Mugged, apparently, not gulped down in one like a Yard of Ale. And nope, I’m not doing a sponsored Yard of Ale, that’s just a hobby). This is what I'm asking: If you want to, if you are able to, please make a donation to the Prader-Willi Syndrome Association UK. Go directly to their donation page, and give them some dosh. I’m cutting out the middle man, here. Fundraising websites won’t slice off any percentages, I don’t need any money to pay for goose fat to slather all over me as I swim the Channel, and I don’t want to know who’s donating and how much. I cannot adequately tell you how important the work this charity does is to people with PWS and their families. The money will go directly to the PWSA, which means it will directly help people with Prader-Willi Syndrome. People like my daughter. Look at her, up there, on the bouncy castle. Cute, isn't she? Don't force me to use my back-up picture of baby otters.
Thank you.
Song is The Meters - Chug Chug Chug-A-Lug (Push And Shove)
Today is the start of PWSA UK Awareness Week. The Prader-Willi Syndrome Association (UK) want to spread the word about the rare chromosome disorder. They want more people to know about the syndrome, in an effort to allow children and adults with PWS to be understood and accepted, and to make more people across the country aware of what the condition means for PWS people and their families. “Talk about PWS” is the strapline. If you’re a regular reader of this blog, you’ll know I need no encouragement on this front. (‘Shut the flippety flip up about PWS’ would be a harsher, but not totally uncalled for, tagline for me and my ramblings).
Today, the PWSA (UK) is talking about...new diagnosis.If you could meet yourself now, what message would you give yourself?
That’s an easy one. It’s to change a thought I had at the time, which I’m convinced is a thought all parents of PWS children have: “Why me?”
To be more precise, it’s “Why my child? Why has this happened to them?”, but boiled down and reduced, it’s essentially “Why me?”
There’s a John Boorman film called Hope And Glory, set in London during the Blitz, where the family are cowering inside during a bombing raid, and someone yells: “Oh, please, God! Not on us!”, and the teenage daughter screams: “Drop it on Mrs Evans, she’s a COW!” I could identify with that selfish, mean-spirited thought. (I didn’t have any specific cows in mind, though, honest. What do you take me for?)
Because in the beginning, in the shocking, frightening, moments when doctors pull the rug from under your feet and tell you your child is disabled, you feel unlucky. Desperately, horribly, unfairly unlucky.
It changes. One day, that thought isn’t there any more, or at least it only surfaces fleetingly, when you occasionally reach the end of your surprisingly long tether.
Once you understand more about the sheer number of things that can go off-plan when you’re talking about the incredibly complicated blueprint of a human being, once you meet other parents dealing with other syndromes affecting other children in other ways, once you see the challenges other parents with non-disabled kids can face, too, “Why me?” is sanded down, and re-chiselled in its place is a different phrase: “Why not me?”.
If it wasn’t me, I wouldn’t have my daughter. And life would not have been the same. It wouldn’t have been as good.
