Monday, 19 May 2014


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 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.

That’s what I’d tell me.

Song is James Barnett - Keep On Talkin'


  1. Now feeling tearful, but thank you-sometimes us relatively new parents need to hear that

  2. yeah, I felt like that too.Then a friend of mine who has had 6 healthy children spelled out her worries.Drink, drugs, not knowing where they are nights ,not knowing who they're with -and when you've spent 18 years bringing them up, they bugger off with hardly a backward glance.Made me feel a whole lot better.X