Chuck

Fifteen years I managed. Fifteen years of kids before I had to deal with it. It was understandable with the big one, lucky with the little fellow. 

I have now experienced my first ever vomiting child incident.

Hard to believe, I know. It’s one of the many peculiarities of Prader-Willi Syndrome that many people with the syndrome lack a vomit reflex. So my PWS daughter, aged 15, has never been sick, apart from a bit of milky dribble when she was a baby.

Meanwhile, surprisingly, my five-year-old, non-PWS son, who regularly partakes in the extreme sport of ingesting large amounts of cake and being completely unable to sit still whilst doing so, had also never been sick.

That was up until the other night. Three times. Three lots of bedsheets. Three sets of pyjamas. Tucking-ups and chucking ups. 

I’d quite like it to be fifteen years before the next one, please. 

Video is You Never Can Tell, by Chuck Berry. I know, I know. I couldn't resist.

Grown-up

It’s been a mixed up, muddled up, shook up world over the last few weeks. No, I haven’t met anyone in a bar down in old Soho, or drunk any cherry cola; I’ve just been sorting out the practical, everyday, how is this going to work kind of life stuff.

I’m used to the war on Prader-Willi Syndrome. My daughter’s chromosome disorder is frightening, intimidating, infuriating, funny, and unique. I know how to fight it: I lose some battles - there are always casualties in war - but I generally feel equipped. The last few weeks, she’s been a bit antsy. I should have been alert, professional, militarily precise. Instead, I’ve been distracted. I’ve been digging in to resist the waves of attacks from the second front: the forces of old age battering elderly loved ones. I’ve camped out in NHS waiting rooms, drunk gallons of tea with social workers and carers, and cooked and delivered so many meals on wheels I’ve been dreaming that my breakfast is going to arrive on a skateboard. I’ve seen a strong woman made weak; a brave soul frightened. 

I’ve been trying to formulate the best plan of action, getting help, taking advice. 

I’ve had to be responsible, sensible.

I held out a long time, you know, but Jesus, I’m finally a grown-up. 

Song is The Exciters - All Grown Up