Wednesday, 20 March 2013


There’s a moment that all parents of children with a disability share.

We lead very different lives, with very different children, dealing with very different issues, but we all experience the same moment once in a while. It’s a slap in the face that knocks the breath out of you and leaves a hot, stinging mark on your cheek.

A friend described it on Twitter this morning.

“Occasionally, just occasionally, my son's disability halts me in my tracks. Watching him trying to run and keep up with other boys.”

I know exactly what she means. I know that moment. When you have a child with a disability, life can be challenging, but you don’t spend every minute of every day thinking about this. You get on with things. You have fun. You don’t love your disabled child - you just love your child.

But sometimes the differences suddenly hit you. You’re in a park and your daughter needs your help to clamber up the steps of the slide. And then you see a tiny toddler scale the ladder like a mini-Spiderman, and it’s like being struck by lightning. Your skin tightens with shock. The stark demonstration of the limitations of your child’s body singes your spirit. You can almost smell the burning.

These moments are only moments, though. And there’s a flip side.

Lightning can also strike in another way. A bolt can hit you on a different day with a completely different effect. You’re walking to the park with your daughter holding her hand and chatting as you go along, and you suddenly remember, in a flash, how there was a time when you thought she’d never walk or talk. This time the shock of the thought is a spark that makes the hairs on the back of your neck stand up, but it doesn't scorch.  Its an electrifying jolt of joy.

Video is Howlin' Wolf - Smokestack Lightning

The Twitter friend mentioned above, who sparked off this blog entry, is @amandajmurphy a brilliant teacher, writer, and mum to a gorgeous little lad with Prader-Willi Syndrome, like my daughter. I wrote about our first meeting here: Links. You should check out her tumblr site: Life's Small Treats.

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