Tuesday, 20 September 2011


We came home from the hospital four days after my daughter’s first spinal fusion operation.

It was major surgery, to correct a dangerous curvature of the spine. It was a draining, nerve-wracking, terrifying, experience for us as parents, and a painful and confusing one for her as the patient. 

Now we were back at home, all of us still shell-shocked. She was morphined up. Sore, spaced out, and sorry for herself.

And there was one extra problem. Someone who has Prader-Willi Syndrome doesn’t physically feel full up. So the main way to deal with this - the only way to deal with this - is by distraction. 

But in her delicate state, it didn’t work.

She couldn’t concentrate enough to read, or play on her Nintendo DS. She was uncomfortable staying in one position long enough to do anything. In her drug-addled, confused state, her brain latched onto the one thing we never want it to: the fact she was HUNGRY.

At one point, she did a slow motion, shuffling, Day of The Dead zombie walk from her bed downstairs to the dining table.

“It’s dinnertime,” she said, her eyes shining out from her terribly pale and strained-looking face, gazing straight through me.
“No, you’ve only just had your dinner, sweetheart. It’s not time for food yet,” I told her.
“Yes. YES!” she replied. 

And then she picked up a knife and fork, carefully starting cutting her meal into bite-sized chunks, and tucked in, making appreciative “mmms”. Not stopping until she’d eaten every last scrap.

There was no dinner in front of her. No plate, no knife, no cutlery. She’d conjured it up in her head. I’d just watched her eat a phantom meal.

I was at my wit’s end. What the hell were we going to do? She needed to rest, but she kept getting up to “eat”. I’ve never felt so helpless in my life.

Then, the very next day, she picked up a book for the first time. (One of a set of 20 Animal Ark stories which we’d bought as a present for being brave in hospital). And challenged me to a game of Top Trumps. And needed less pain medication. And giggled. And was herself again.

No matter how dark a day is, the light always returns. Always.

Video is R. Dean Taylor - There's A Ghost In My House

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