Who am I? Who am I?  Not Jean ValJean, that’s for sure. But when I was listening to Les Miserables the other day, I realised that he had a point. We all need to be defined by something, and that something is ourselves.

As with many mothers with young children I ended up subsuming my own identity a little into the daily grind of feeding and nappies and baby groups and weaning and nappies and …well, you get the picture. I was grateful that I didn’t have to juggle work and parenting, but I did lose something because of that. The world of work, although often stressful and with its own challenges can offer things too; a pay packet at the end of the month, a thank you, a simple acknowledgement of a task completed on time. .

When my youngest passed the age of two I expected to be looking outwards again, planning a return to work, finding myself again after the years of baby-fugged-brain. Then his development delay became increasingly obvious and just as things should have started becoming easier, I found myself struggling even more. Hunter Syndrome knocked a couple more punches in, and has dominated my life for the last nine months now.

Last week, at a writers’ group meeting I went to, we were asked to give our name and say something interesting about ourselves. It went round the table with people mentioning working in prisons, boxing for England and other fantastic things. Then it got to me. Who am I? There was so much I could have said, but instead my mouth opened and I blurted out that my son has a genetic disease.

I could have kicked myself. Yes, it’s highly important to me at the moment, and I find it hard to think about much else, let alone write about anything else. But Hunter Syndrome IS NOT ME! I am not defined by my son’s disease. I need to learn to step away from it sometimes, and find myself again.

So here is some of what I could have said. I have degrees in both Chinese and chiropractic. I love baking and made my brother’s wedding cake. I received a marriage proposal on a train in China. I had two home births. I was the only person in my class at school who answered yes to the question ‘Would you live on a desert island by yourself’. I once sliced the side of my finger off in a bacon slicer when I worked at a supermarket.

Wow, it’s a pretty hard exercise to try and think of something interesting. But it has taught me a useful lesson. I need to make more of an effort to be me. Do some yoga. Get back to writing the novel. Clear out my wardrobe. Anything.

Hold me to it?