Nov 6, 2018 by Downsyndromecentre
My sister Caroline was born on the 19th of February 2005. I was just two weeks shy of my sixth birthday. I remember certain moments from the days following her birth – going to visit her in hospital for the first time; holding her for the first time; and welcoming her to the family home. I had had mixed feelings about the prospect of having a new baby sister, being the youngest at the time, but as soon as I met Caroline I was glad she had become a part of my life.
My parents and extended family were taken completely by surprise when Caroline was born with Down syndrome and didn’t know what to think. My sister Elizabeth, who was nine years old at the time, after hearing mum say that Caroline had Down syndrome, knew she would be a little bit different, but not the extent that she could pinpoint exactly how. I’m sure I heard the word being used but I had no concept of what it was. All I was aware of was that I had a new baby sister. I remember bringing photographs of her in to school and proudly showing them off to my class mates. I don’t know when exactly mum explained to me what Down syndrome was and the impact it would have on Caroline’s life but I think it was within her first few months. She drew comparisons between a boy in my class who required an SNA and extra help with reading and writing exercises. She said Caroline would be a bit like him. This didn’t faze me at all because as far as I was concerned, that little boy was no different to the rest of us.
Caroline & Sarah (2012)
As the years go on and Caroline grows up, I see that things aren’t quite as simple as I thought they were when I was six years old. Whenever I happen to mention I have a sister with Down syndrome, people always react in an uncomfortable manner. It irritates me because it isn’t something to make a big deal of. One in every five hundred people are born with Down syndrome so why do people cringe when I mention it? I’ve had people say: “I’m sorry to hear that,” and this bothers me the most. You wouldn’t tell anyone else you’re sorry to hear they have a sibling so why tell me? The best response I’ve heard is, “and what age is she?” This is the kind of question anyone would ask when hearing about someone’s family for the first time. I remember smiling when I answered, because it was such a normal question requiring such a normal answer. No awkward silence, and no avoidance of eye contact.
As I get older the meaning of Down syndrome becomes more evident to me. I notice the differences between Caroline and others her age. Sometimes they hit harder than others. Generally I am an optimist, and knowing that in this world all people are unique I view Caroline having Down Syndrome as just another of her various quirks, like her love of flannel shirts and ice-cream. But other days, usually when I’m babysitting and having conversations with children her age and younger, so effortlessly, it breaks my heart a little. But that’s life, and its one of the things I’ve learnt to cope with over the years. It’s funny, you would think it’s something that becomes easier to understand with time because you adapt (you have no choice but to), but for me it feels like the opposite. Sometimes I find myself wondering, what if? But then I stop myself, because there’s no point. She wouldn’t be the cheeky, quirky little person I know and love if things were different.
Sarah & Caroline
In all sibling relationships, you have up days and down days. My relationship with Caroline is no different than it is with Elizabeth. Most of the time we all get on well, we sit down and watch movies together on a Saturday night, sing and dance along to the Greatest Showman and Mamma Mia soundtracks, and generally just tease each other. But of course, there are days that aren’t quite as amicable. A volcano seems to erupt inside Caroline when Elizabeth and I refuse to watch High School Musical 2 for the twentieth time in a month. There’s a similar reaction when one of us sits in her designated seat on the right hand side of the couch, but these fights never really last long and subside after a twenty minute calm down period. However, with each disagreement comes a learning experience: for Caroline, its attempting to compromise; and for myself and Elizabeth its attempting to be patient.
Caroline & Elizabeth (2016)
Elizabeth and I both agree that having a sibling with Down syndrome brought certain challenges growing up. Elizabeth, who was nine years old when Caroline was born, would say it made her mature faster and learn to become a lot more responsible than she might have otherwise, knowing that mum needed that little bit of extra support. In a way, Elizabeth is a bit of a second mother figure to Caroline. This ‘role’ forced her to think more before going out and meeting friends than the average teenager, because whether or not mum would need a bit of help managing Caroline’s afternoon routine, would play on her mind. But as she has grown up, she knows that Caroline doesn’t need to be at the forefront of her mind, because Caroline is becoming more independent day by day.
Sarah & Caroline (2016)
The challenges I faced were a little different. As I mentioned, Elizabeth is like a second mother to Caroline, and so I am more like a sibling by definition. This means that Caroline and I would fight more than Elizabeth and Caroline would. Caroline is more careful to obey Elizabeth’s instructions and not get on the wrong side of her. I, on the other hand, am no threat. Caroline knows exactly how to press my buttons and is never afraid to do it. But I am just as fiery as she is, push hers back. I sometimes feel like this has created a barrier of some sort between us and that maybe she is more comfortable in Elizabeth’s company than mine. At times this would get to me, and it made me wish that I could go back in time and change some of those interactions, but I knew I never could, and it was all about rebuilding bridges. At thirteen years of age, Caroline is beginning to reconnect with me and I with her. As we grow up we realise the importance of listening to each other and respecting each other, and most importantly, knowing when to apologize. Now we make each other laugh more than ever, and chat about our days without a bit of bother. That tension will soon be a distant memory.
Caroline is honestly one of the best things that has ever happened to me. Having her in my life has taught me a lot about who I am as a person, the good and the bad, and how to be the best version of myself to bring out the same in others. Her presence has taught me the importance of diversity and having respect for every human being, despite there being an aspect of someone that might be a little unusual. Having Down syndrome is not something to dwell on, it is something to embrace. Despite there being certain differences between my little sister and other thirteen year olds, its important to know that all people are unique. And while Caroline may face challenges in things that the rest of us take for granted, she will get there in the end. The label ‘Down syndrome’ will not stop her from achieving the same, full quality of life as the rest of us.
Sarah, Caroline & Elizabeth (2017)
By Sarah McGee