The Magic of the 47th Chromosome

When it comes to Down's syndrome, the most common genetic disorder effecting one in every thousand babies in the UK, we usually hear the stories through the parents' perspective. To them, it is nothing short of a "near-death experience": once it happens, you have a complete different outlook on life, everything you think you know changes and you have to learn how to live and love your new circumstances but in the end, you wouldn't have it any other way...

On July 3rd, 1989 my sister Ayse was born with Down's syndrome. Of course being only 3 years old myself, I wasn't there as it happened and I don't even remember the conversation that took place between me and my mother regarding Ayse's condition. In her retelling of the event, she sat me down in front of her and said that my sister was slightly different then all the other people that I've known so far.

"Different how?" I asked.

"She will be able to do much of what you can do but she'll be able to do them slowly."

A slow sister. That's not so bad, is it?

For that we need to fast-forward quarter of a century, and a 28 year-old me answers, without a shadow of doubt in her mind, no, it's not bad at all. In fact, it has been a life-altering, Alice in Wonderland kind of a journey where I had the opportunity of shifting through realities; one with my sister where not everything makes sense, its magical, beautiful and often surreal, and my everyday life outside the bubble of her reality where things are... well, they are exactly as we all know they are.

When I started high-school, I realised that I felt strangely jealous of my classmates when it came to sibling relationships. They had difficult, rocky yet vivid relationships filled with tension and adolescent energy. But that was not where my envy lied; I envied how they could talk to each other about those relationships, comparing notes, complaining while offering each other valuable advice (put a locker on your diary, sneak up and listen while she's on the phone with her boyfriend and later on use it as extortion etc.). I also wanted to talk to them about my relationship with my only sibling, believing I had much to bring to the table but my experience was so different than of my classmates that it felt like they were talking about humans while I was making contact with aliens from outer space.

So I turned to literature. I helplessly looked for those who were like me and shared their incredible journeys but soon I realised the category was monopolised by the stories and memoirs of the mothers. I read and loved them but in all honesty could not relate to them. Those brave women, bless them, all talked about this scary, confusing but at the end wonderful thing that happened to them and how it changed their lives as they knew it, however, this was not something that I was going through myself. It didn't "happen" to me, it was my reality from the begging. I grew up with Ayse, thus she became my normal. For me, it was normal to sit in front of a mirror and talk for hours, making up random stories, or say the first thing that pops into your head; it was normal to like everyone you meet and not think ill of them once they leave the room. It was okay to be yourself without feeling like you have to justify your actions, your likes and dislikes. It was okay not knowing that we were all going to die, to hold everyone you meet to same standards without any prejudice and it was okay to give people random hugs. I grew up in a household where acting from the heart was the norm and it usually led to something beautiful.

It was only when I started primary school at the age of seven, I realised that this wasn't really the norm in the world that was outside my house. Human relationships are, by their nature, complex, dramatic and sometimes downright exhausting. As I grew up this made me value the relationship I had with my sister even more, the simplistic and comfortable sibling relation where I didn't had to be anything but myself, where I didn't have to worry about what I say or what I do, where I can just be there with her, in the moment and enjoy her company.

When it comes to Down's syndrome, the most common genetic disorder effecting one in every thousand babies in the UK, we usually hear the stories through the parents' perspective. To them, it is nothing short of a "near-death experience": once it happens, you have a complete different outlook on life, everything you think you know changes and you have to learn how to live and love your new circumstances but in the end, you wouldn't have it any other way. At least that's what my mother says... But for me, as a sister, I feel blessed for having Ayse in my life, leading me down the rabbit hole towards a reality that is uniquely hers and purely magic.

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