Grandad

“She’ll be OK. I don’t think she’s got it that badly.”

My dad displayed all of his years of medical knowledge trying to convince me, and himself, that his granddaughter’s life wasn’t really going to be affected by Prader-Willi Syndrome.  When I say medical knowledge, I actually mean none. This is a man who has to be at death's door to drag himself to the doctors. If he chopped his arm off in a threshing accident, he’d probably try to use superglue and string to fix it.

But he had to learn that when someone is obsessed with food and never physically feels full up, you can’t do the following:

• Wander to the kitchen cupboards every now and again, and saunter around the house grazing on liquorice sticks.
• Mention the words breakfast, dinner, tea or snack when it isn’t breakfast, dinner, tea or snack-time.
• Share a piece of your chocolate bar, using the phrase “Oh, go on, a little bit won’t hurt.”

What you can do is this:

• Keep a few bits of pasta on your plate, ready to replace any your granddaughter drops on the floor, thus avoiding a Big Drama.
• Have a box of raisins in your pocket, to dish out as an alternative in case you’re out somewhere and sweets or cake are offered by the well-meaning uninformed.
• Allow your granddaughter to take great delight in plucking your chest hairs, however painful (see picture, top of page).

It took a while for him to accept and understand that where PWS is concerned everyone has to change their behaviour to make life easier. But he did, and I love him for it.

Happy Father’s Day, Dad.

Video is Ian Dury & The Blockheads - My Old Man