The day my sister was born was the day I grew up.
Not physically. I was still in buckskin shoes and ankle socks. But it was the day my brother and I passed into my mother’s out-tray. The day my mother cut our invisible chord and wrapped it tight round my sister’s pale sick heart.
My sister had arrived as the ambulancemen were carrying my mum out of the high rise and into the forecourt. My cousin was there when it happened. We were upstairs - 6 floors up - watching my aunt’s black and white television. (I have no memory of what was on.) My cousin said my sister’s tiny body was the same colour as her best lilac blouse.
The day we found out my sister was Downs was the same day Neil Armstrong lifted off for the moon. My brother and I sat in the car outside the hospital eating opal fruits. (None of your Starbursts then!) I watched my parents go in as one thing and come out, one lifetime later, as another. It was their body language. My father was more hunched. And my mother’s eyes were red.
She would tell me later that the hospital offered to take my sister ‘away.’ (Who knows where ‘away’ was. It was the 60’s.) But that was never on the cards. One of my mum’s repeated litanies was ‘What’s for you, won’t go by you!’ She lived by it. And so did we.
They got back in our wine red Ford Anglia and we drove to Stevenston. To my Aunt Mamie and Uncle Davie’s caravan. They weren’t real relatives but they were my parent’s best friends. Chosen relatives. They had experience of disability. They had Anna. Not their own child but their niece. We’d grown up with her too. Anna was blind, couldn’t walk and had the learning age of a 5 year old. She was 25. And we loved her.
It was summer. We played football, ran on the stones, ate ice cream cones and fell out with my ‘cousins’ while inside the caravan my mum wept. On the journey home it was pitch black and my brother and I sat in the back, noses pressed to glass, watching the moon. “Are they there yet?" "Bet I see them walking on it before you do!" "How much?” In the front my mum and dad sat silent. They must have felt their future as black as the sky.
My parents were told she wouldn’t last the year. My dad was working in Nigeria at the time. An electrician by trade he’d decided there was no future in Greenock so he’d gone abroad to carve a living. By the time my sister was born he’d worked and lived rough in Pakistan, East Africa and Nigeria. It was another one of my mum’s litanies. ‘I’ll say this for your dad, he’s a good provider’. She meant it as a compliment.
Now we had a crisis. Did my dad go back and leave us all here? To wait for my sister to die. As always my mother took control. She swept us all up and off we went. To Nigeria. My brother went to a local school. I taught myself by correspondance course. My tutor was in Australia. I did the work, put it in the post and he marked it. It took three weeks for a composition to come back. I was my own mistress. I loved every single minute of it.
Just as well, because my mum had other things on her plate. Her mission, which she embraced with a passion, was to prove the doctors wrong. By the time we went back to Scotland, on leave, my sister was walking, talking, even swimming and the murmur in her heart had gone.
My sister was my mum’s life and her achievement. I wrote a film about the intensity of their relationship. I was with them when they both watched it for the first time. When it was over she turned to my sister and said, "That’s not you, you know. You’ve got better manners".
But it was my sister on the screen. And my mum. And ‘Kenny’ was me. I was working through my anger and my love. Selfish, I know. Just like the characters in my story, my mother had kept my sister close and safe. She was bright, artistic, talented, kind, polite, funny and happy. But she’d never been left alone for as much as five minutes. She’d never been out of my mother’s sight. She’d never been to a Centre, never mixed with other Downs people, had never made her own dinner, picked her own clothes or crossed the road by herself. And all those chickens came home to roost when the fictional events of my story became the facts of our lives.
The week the film premiered in Glasgow my mum was diagnosed with terminal lung cancer. Her response was characteristic. "We need to talk". She didn’t cry that day. Well, not in front of me. She died two and a half years later. She’d been given six months. But she held on, determined not to leave my sister. I lied to my mother more in that time than at any other in my lifetime. (And I’d lied to her a lot.) I promised her I would keep things exactly as they had always been. I would keep my sister close and safe. I needed my mum to die in peace.
My sister and my dad lived with us for two months after she’d gone. Two months. That’s all. But we were all on top of one another. No one could breathe. My husband and I couldn’t work. My excuses choked me. So they went back to their own flat and I drove the thirty miles to see them every day. My mother’s ashes were in the boot of my car. To chide and comfort me.
I got social workers involved. They provided carers. Sometimes three different ones in the same week. My cousin rallied round. Without her we could not have managed. My sister learnt to use the microwave and clean the toilet. She made sure my dad didn’t fall over or set the house on fire. She hid his cigarettes and dished them out one by one. She’s my mother to the root. She discovered a love of baking. Though we had to draw the line after she baked four huge banana cakes in one week and polished them off by herself.
I gave her money but she bought all their food and choose her own clothes. I arrived one day to find her feeding our demented dad a sandwich of avocado, chicken, tinned salmon AND beetroot. Another day she went out wearing pink velour joggers with a swingy leopardskin jacket. She’s four foot eight and weighs twelve stone. I could feel my mother’s disapproval in the bite of the air. We had what we euphemistically call ‘blips’. We had tears and tantrums. Both of us. In spades. She was living a late onset adolescence. My dad had early onset dementia. It was an interesting time.
Then I committed the most cardinal of sins and enrolled her in college. She was 38. The ghost of my mother was two steps behind her the first time we walked down the corridor. The room at the end was full of other adults with a variety of learning difficulties. Some were Downs. The first thing my sister learnt was that she was part of another family and that we were not all there was.
Now she’s about to go into her third year. This year will prepare her for work. She’s just been nominated as a finalist in Scotland’s Adult Learning Awards. My knee jerk reaction, apart from pride, was to tell her not to be disappointed if she didn’t win. I followed that up with a quick ‘what’s for you, wont go by you!‘ Her response was swift. "Who do you think you are? My mother?"
If I think back to that night in the car, the night the astronauts were on their way to the moon, I remember exactly how I felt about having a sister with Downs. I’m ashamed to say my major disappointment was based on the fact I might not be able to dress her up in pretty clothes. Last week she tried on my favourite little black Ghost dress and looked fantastic in it. She’s wearing it to her award dinner next Tuesday.
