Posted on June 9th, 2013
My little brother has Down’s Syndrome. For years, I revelled in this fact. Its playground currency was high. No one else in my class – or even my school – had a brother with Down’s Syndrome. And, stuck as I was between an over-achieving older sister four school years ahead of me and a yet-to-be-born younger one, I didn’t even have to share it with any siblings. It was a badge of honour, an attention-getter. I thought it marked me and my family out as different, special, maybe even better than the others.
Michael currently lives with my mum in Wolverhampton. When he was born in October 1988, he and Mum were in and out of hospital for quite a while. It turned out that my new brother had attention-grabbing attributes in spades. He saw your Down’s Syndrome and raised you a hole in the heart. Apparently this is relatively common among babies with Down’s but it meant a massive operation on a tiny little thing and must have been terrifying for my parents who knew what was going on. At three, I had only the vaguest idea and can only call to mind an unfinished patchwork of memories like my gran coming to stay for a while and brainstorming possible names with me (Lamppost Solomon being my favourite suggestion), Dad comforting me when I woke up screaming for Mum, the odd trip to the hospital and an overarching air of drama.
Eventually, Michael and Mum came home for good and both were – and are – fine. Michael has a seriously hardcore scar down the centre of his ribcage, which he’d probably show you if you manage to catch him in the right mood.
Slowly but surely Michael learned to smile and sit and laugh and walk and talk. Every one a landmark achievement. His nose ran incessantly. His tongue was (and is) amazingly long. For a time, he constantly chewed the arm of a sofa while watching endless episodes of Thomas The Tank Engine to the point we had to gaffer tape the sofa together. On one particularly fun day, I convinced him to let me style his thick, dark hair using Vaseline – I’m not sure my parents have forgiven me even now. Life bumbled along in a blur of CBBC and dancing lessons, hospital appointments and coffee mornings, playgroups and babysitters. Michael developed deep and long-held loves for Marmite, Disney films, cars and trains.
As a family, we joined support groups where we met kids whose disabilities were way more severe than Michael’s. Along dark, windy corridors in Edwardian houses that had been adapted into community centres, my two sisters and I found bright rooms filled with little boys and girls who couldn’t sit up or form words and required near-constant attention from their parents. Children who couldn’t stop dribbling, who were gorgeous and sweet and loved cuddles, who stared around them with huge, generally happy but strangely vacant eyes. Some with heavy, lolling heads atop necks that could not hold them upright, some with skinny gangling arms that ended in hands they couldn’t control. Children our ages confined to wheelchairs and nappies. Kids who hit and spit because that was all they could do with these bodies that would not obey their commands like ours did.
All the mums had the same kind of scruffy, harried look; always kind, always pleasant but not quite present, not quite in the moment. Sleeves perennially rolled up, with guarded stances that said, “Ok, what now? What next? What do we need to do to get through this?”
Michael was not like these other children and, in comparison, we saw him as pretty much normal. We siblings would play until we got bored and make fruitless demands to go home. These community house hangouts dragged us into a world we didn’t want to be in. They were childish places full of childish things when we were trying to grow up and move beyond into the world of Just 17, Top of the Pops, nail varnish and boys. We didn’t really understand the social importance of these places for both our brother and our mum, we just thought it was a chore. We tried to be gracious but we couldn’t help being selfish. We had the audacity to feel like we were the ones being hard done by.
To be continued.