This Friday, September 18th 2015, is Jeans for Genes Day, a big happy mark in the calendar for children, schools and all kinds of people around the UK. It is a cause very close to my heart and enmeshed in many areas of my life.
I am a working mum to lovely sons, the youngest of whom has two very rare genetic disorders; conditions so rare that they have more numbers than letters in their title. He turned nine this week, and I could never have imagined that our family life would have levelled out in the way it has from those dark early days of his diagnosis.
How many days have I been a “special mum”? 3286 in case you were wondering. And how many days it has been since we received the explanation of exactly how special my boy’s genetic makeup was. 2998, in case you were wondering that too.
It’s strange to see all that life put down in numbers and I really hope that I have made the most of those thousands of days, especially the early ones. Because even though it’s easy to have instant recall of the harder times in articles like this, it’s so much better to broaden out and remember the good times too.
Of course, I would be remiss if I didn’t mention how upsetting it was to have a sick baby and nobody listen to me. Or our confusion and upset when we finally learnt that he had a condition so rare that they’d never met another child with it. I will never forget all the times he has been ill, and how hard I battled to find out all I could, and parent in spite of the difficulties we were warned he might have. I still worry about what might be lying in wait to tip the balance we have fought to achieve, and of course I hope that I am strong enough to fight any challenges that emerge.
But then I remind myself to enjoy every moment, achievement and milestone, which are the secret rewards of parenting a “special” child. Every day I see my strong boy who doesn’t know how hard he works to look as typical as he does. I also see his brother, growing up with a sense of responsibility that underpins the usual sibling frustrations.
It’s not easy when your child is sick, or different, and you become grateful for anyone who understands. With my son’s conditions as rare as they are, I was lucky enough to find a small group of families who share the same genetic differences. Chromosome 18 Europe was a port in my storm of confusion and upset, and I have thrown myself into supporting it. Jeans 4 Genes is another charity that I wanted to help, and that has in turn opened a whole new door for me.
The Treehouse At Number Nine is a story I created with my friend Karen that I adapted to include characters inspired by some of the children on the Jeans4Genes website.
My gang of special children are the Genies, and they now appear in a musical story app we made with the company CAAST that is free to download for iPads and which has a donate button through to the charity.
Through The Treehouse at Number Nine, I have realised a dream, am empowering my son and children like him, and have provided another way for people to help support this wonderful charity. All side effects that I never knew would come with the labels we inherited all those days ago.
This Friday 18th September, I will be wearing my jeans with pride and speaking with pride at the local school. I will talk to the children and teachers about my characters, and the charity and thank them for their pounds and pennies of support.