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Colourful Threads of Humanity: Celebrating Our Unique Patterns on World Down Syndrome Day

38 years ago around this time, I got to know that my reign as an only child was slowly coming to an end. I knew that, one way or another, I’d continue to reign supreme, so I wasn’t too bothered. In fact, I was pleased I’d finally have a little sister to boss around. The thrill of my inanimate subjects who never so much as objected to my wild ideas was wearing thin, and I felt ready for a challenge.

So the name-choosing discussions began in earnest.  I was adamant that my little sister would be called Lisa or Caroline, preferably both.  My parents dutifully agreed with my choice, and asked me to choose a name in case a little brother turned up.  Truth be told, I wasn’t too excited at the possibility of a little brother, although I dutifully repeated my parents’ mantra to whoever asked what I prefer: ‘either will do, as long as they’re healthy’. So I graciously left the choice of boy’s name entirely up to them. 

Fast forward a few months, and my little sister Victoria was born.  Yep.  Victoria.  I obviously objected that a promise is a promise and that going back on a promise is wrong.  But Victoria, you see, was born prematurely with serious health complications on 8th September.  And my parents christened her Victoria while we all hoped she will live.  Victoria Caroline Lisa – I hard-headedly added on the names because a promise is a promise and it was essentially my way or the highway – pulled through like the fighter she remains till this very day.  Only, I was told, she is a super special girl. 

Victoria was born with an extra chromosome 21 – Down Syndrome.  I carefully learnt all that was accessible to a little girl before the days of google were even in vogue.  And I decided that an extra chromosome is cool.  I was fiercely proud that while her development was delayed on certain fronts, she was smashing others.  More importantly, she ticked all the boxes that I expected of a little sister (or subject).  She adored me, she obeyed me, and she accepted my fierce big-sister protection.  We also had fun doing crazy things.  Sure I adapted some of my crazy ideas to suit her needs – but it all worked out fine.  I also learnt to understand someone who was completely different from me.  She had different tastes, different goals and different quirks.  She was less passionate about being the boss and more passionate about getting access to her favourite snacks (even when these were not allowed).  She was absolutely disinterested in reading stories but totally committed to miming out the songs I taught her.  She was perfectly imperfect.  Just like me.

Today, on World Down Syndrome day, as a (mostly) grown-up professional woman who works in the field of care, I found myself reflecting on how right the young me was back then.  An extra chromosome is cool.  Or not.  Doesn’t really matter.  Because it doesn’t define those of us born with an extra chromosome.  What defines us all is our humanity, the connections we forge and the lives we touch.  My little sister personifies all this.  I love her laughter, her kisses, her clever elaborate plans (she still finds underhand ways of getting to her favourite snacks – especially when they’re not allowed!).  Her extra chromosome still doesn’t define her, as much as my single Chromosome 21 doesn’t define me.  She is vibrant, colourful and beautiful. She doesn’t need World Down Syndrome Day to celebrate her unique beauty.  But the rest of us do – as a reminder that if we fail to include persons with Down Syndrome in our lives, then we would be missing out on a whole lot of colour in our lives.  I know.  Victoria Caroline Lisa taught me that lesson years ago.

IDEA Care offers Personal Assistance to persons with disability.  Call us on 2145 6310 to get to know more about the services we offer.

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