Becoming a mother has been a very real and raw experience for me. During my three pregnancies I felt in equal measure both the fragility and strength of life. I felt something wonderful and at the same time became acutely aware that my sister would never be able to share it with me. Not by choice, but because she has Down syndrome.
My sister Emily is kind, open, intelligent and charismatic. She is married, employed and lives with her husband, who also has Down syndrome.
Having Emily in my life is the norm. I don't know a world without Down syndrome; it's part of the furniture. But the gruelling and life-changing experience of becoming a mother brought up some pretty bold questions for me.
I have thought a lot about what it must have been like for my parents to give birth to my little sister in 1983, when I was just 19 months old. The information they were given after she was born was fraught with negativity and can'ts and won'ts; the picture painted was bleak.
Thirty-two years later, suffice it to say the warnings weren't true.
I don't want to say it's all roses because I think there can be too much of that when it comes to this arena. Life with Down syndrome isn't a walk in the park and there are challenges that Emily has faced which myself and our other two sisters have not.
However, I'm under no illusions that everyone without Down syndrome is living a perfect, challenge-free existence. Does such a thing exist? From my limited experience, life seems to throw challenges and curve balls at everyone I know, at one stage or another. Em is no different.
The funny thing I've noticed about Down syndrome compared to other disabilities is that there is this weird element of cutesy when people talk about it. I have never heard a 30-something-year-old with cerebral palsy described as "so cute!", yet I get constant variations of this comment about my (married, employed, independent, adult) sister.
On television just the other week I heard someone say that people with Down syndrome "have such big hearts". While it might seem like a nice thing to say, I'd like to stop everyone right there, because it simply isn't true. People with Down syndrome have just as much variety in personality, likes, dislikes, good habits, bad habits, beliefs, opinions, intelligence, demeanour as anyone else in the world.
My sister's moods cascade just like anyone else's. I've seen her angry, anxious, happy, elated, nostalgic, embarrassed, frustrated, sad, scared... Unfortunately I don't think there is an extra chromosome that can morph someone into a gentle, friendly, caring, happy, musical love bubble. If there was I'm sure people would be lining up for it! The irony of this seems lost in the wider community. Is it just me or is there an elephant in the room?
Generalisations about any group of people, good or bad, fail to recognise the brilliance and diversity of individuals in the crowd. By describing someone as perpetually happy or cute or lovable denies them of their true expertise, skills and individuality. All people feel the shades and colours of life, regardless of who they are or how many chromosomes they have. Without the light and the dark there would be nothing left but a shell. And a shell, my sister is not.
At a get-together a few years ago I overheard someone tell Emily how cute she was, and this was her reply: "I'm not cute, I'm a woman."
Sometimes people want to know the exact ways in which my life has been impacted due to having a sibling with Down syndrome. But it is so ingrained in who I am I struggle to think of a single defining thing. They want to know if I feel like I missed out.
The answer? No. I do remember feeling pretty peeved as a child when Em was constantly referred to as being 'special' (This was the 80s, remember). It made me wonder, if she's so special what is wrong with me? I want to be special too!
People in the street would stop and comment or give strange looks (still to this day I find people either stare too long or busy themselves trying to look everywhere but) or shopkeepers would give her a treat while my other two sisters and I stood in the background, already too encumbered by the restraints of society to act.
Looking back now the most amusing part of all this was watching Em batting her eyelashes and putting on a show (and pulling the wool over everyone's eyes in the process). She went through a phase of giving the pointer finger as an insult, not realising that it was the middle finger that was the offensive one.
One day I watched her go through the motions while we were at the shops, crooning to a lady behind the counter and thrusting up a small toy. The lady smiled pitifully: "Just let her keep it, dear, the poor thing." No amount of protesting from my mother would talk her out of it. As we arrived back at our car Em poked her tongue out at me, held her toy defiantly in my face along with her raised pointer finger and I remember being less than impressed. Poor thing? Yeah, right.
I laugh at these memories now. Then as I'm scrolling through them in my mind I realise, suddenly, there has been an impact. Down syndrome has instilled in me an appreciation for diversity. I'm not scared of difference. It has taught me never to judge. It has given me the gift of compassion and patience. It has shown me beauty where it is least expected.
These are the things I choose to hang on to. On those nights when I lay in bed and think about her. On those days I am feeling angry and tired of having to fight for her. During those times that I worry about what is going to happen to her in the future, when she is old and my parents aren't able to take charge, aren't able to help us. On those rare occasions that I wonder what it would be like if she didn't have Down syndrome: would she have children, would we get along, would we share clothes, would I confide in her my deepest secrets? During those moments I wonder what it would be like without her, and I see all the things she has brought into my life.
Simply by being herself.
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