You know, the more I write about life with Down’s syndrome, the more I seem to be hedged about with difficult moral decisions. Leaving aside the fact that I write about my own child, whose dignity I must protect, it’s hard not to fall into the Traps of Cliché.
There’s the ‘cute kid with Down’s syndrome picture’ cliché. OK, I took some pleasure in the fact that Sam was such a good looking baby. People used to stop me in the street to tell me what a gorgeous little thing he was (I think he was busy catching eyes and batting his eyelashes). There were occasions when I thought of making a fortune out of him on the baby modelling circuit (and then I came to my senses when I read that ‘children must be able to take direction’ – none of my children, then!). There are lots pictures around with beautiful, click-bait children with Down’s syndrome – and their parents are, rightfully, as I was, proud of them. It’s the comments, when they are used on social media, that make me cringe.
And then there’s the ‘everything is awesome’ one. Or ‘everything is quirky and funny’. We skip from one moment of joy and laughter to another, without pause. Not. Or the ‘everything is difficult and woe is me’ one. How hard our lives must be, and how much you must pity us. Or the ‘my child is super talented at this, that or the other special talent’ one, the inspiration porn that gives us a warm glow in the cockles. The clichés are there, everywhere you care to look – and every single one of them props up a stereotype. If you’re not careful, you fall into the trap of perpetuating them yourself, despite your best intentions.
You see, the thing about Down’s syndrome is, as is the thing about life, that there aren’t really any guarantees. Your child might be lovely – or they might be a pain in the proverbial, just like the child who has the perfect chromosomes. Yes, there will be some level of learning difficulty, but, as with all the other parents in the known universe, you don’t know how that will pan out, not until you are a long way down the parenting road, as it were.
So, there it is. Sometimes I will write about the days when it’s funny, or he’s beautiful, or those times when we are sad and lost and lonely. Sometimes I’ll be pleased and smug, and sometimes I’ll be angry and I’ll demand change. I’ll try to avoid the trap of it being all one way or all the other. It might get confusing and it might be contradictory.
Because that’s what life is – with or without Down’s syndrome.