Tuesday, 21 January 2014


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


  1. We don't have kids, but looking after my dad when he was alive and trying to make sure my mum is coping now that he's gone (she's not) has dominated my (previously) comfortable life over the past few years. Maybe we should all start a Support Group?

  2. I have discovered being a grown up is not as fun as I thought it would be!

  3. Sorry you are having a rough time. I hope that the support you receive brings you some relief. X