There’s a story I have tried to write in many different ways over the years, but I’ve always hit the same wall. I have to do it right, I have to do it justice and somehow every time I try I haven’t quite found the right voice for it.
The story is about a boy with Downs Syndrome. I know his name, I know why I want to write it but I can never seem to get there.
One of the hardest things to do is explain to people I ‘had a brother’. I mean to all intents and purposes ‘had’ probably is the word to describe it. I mean he was here and then he died so he isn’t here anymore.
But he never left me. There are times when I still talk to him when I need to. His photos are in the locket I wear round my neck everyday. I have photos of him in frames and on my wall so he is one of the first things I see everyday. But more than all of that a part of him lives inside of me and helped to sculpt me into the person I am today.
He taught me how to care about someone else and that caring nature is something I hold onto. I try to help everyone, I always have done. Some people find it suffocating and push me away but in the end its the one part of me I can’t change. The inbuilt need to want to help the people I care about and it comes from the first moment I saw my little brother lying in the crib in the hospital looking like a tortoise.
I remember walking into that room over 30 years ago as if it were yesterday. I remember walking into his hospital room after his operation with a similar clarity but a deeper sadness.
There have been times over the years when I wished I could turn the clock back and have that time over again. To be able to talk to him once more and see his smile light up the room as it always did but that is not something I will ever be able to do.
I can give him a new voice, I can write a character for him so that he lives on. I can give him an experience that he didn’t get the chance to have when he was alive.
I’ve been writing bits of children’s stories for a couple of years now and I woke up this morning with the right story in my head. I think this time I found his voice.
In doing some research to make sure I got everything right I realised that I have a bigger responsibility than just to my brother in writing the story. I have a responsibility to everyone who has Down’s Syndrome.
Thankfully the Down’s Syndrome Association is on hand to help. Have a look at their website and read what they do and what they are about.
You see when I was a child I was taunted with ‘Your brother is a retard’, it was the 80’s and people used those sorts of words back then. I never had much patience for it and often found myself getting into trouble for lashing out at the people who called him names.
I didn’t care what they called me, I’ve had a lot of ‘nicknames’ over the years, just couldn’t listen to anyone calling him names.
That is why I always wanted to write a story for him. I want him to live on and help teach people that it is ok and not something to be afraid of. I think the world is much more tolerant now than it was when I was a child and people no longer ‘suffer’ from conditions like Downs Syndrome.
I hope this time I can finish the story. If I do I will ask the people at the Down’s Syndrome Association to check it for me and make sure I have done the condition justice and then I will try to get it published.
It will be a long road but I made myself a promise that I would write him a story and I’ll get to the end of it one day. I think he would have really liked that.