A love letter to my sister.

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BY SARAH

We’ve shared bunk beds, walked through school together, cried on each other, got in trouble together, and of my three siblings, she’s often the one who drives me the craziest. I’m number 3;  she’s number 4.

My little sister is brilliant. When I got into the school play, she knew the lines of everybody else in my scenes because she helped me practice so much. We sing High School Musical, The Greatest Showman, and Frozen at the tops of our voices and think we sound better than the original singers. Our jokes are hilarious to nobody but us, and we crack each other up with one look. 

It sounds like a pretty good relationship, right? Right. It absolutely is. But it also has the added twist that my little sister has Down’s Syndrome. Although saying “she has Down’s Syndrome” is accurate, it’s an ineffective way to describe her. Although immensely proud of it, she is so much more than an extra chromosome.

To be honest, I don’t think I realised there was anything different about my little sister for most of my childhood. I mean, of course I knew she was different – a little slower, being kept back a year in school, getting extra help – but it just wasn’t glaringly obvious to me. When we both went to secondary school, I remember the gap between our abilities getting steadily, more obviously, bigger. I also realised that not everybody else had to help their sibling cross the road or explain things more slowly because they hadn’t been able to process what had been said. I saw how my friends didn’t worry in the same way as I did and that my sister’s plans for the future were shaping up differently to others.  

I was sometimes jealous of the way my friends didn’t have to take care of their siblings like I had to take care of my little sister. I wished we could have a “normal” relationship. This comparison is not something I’m proud of, and I’m not sure when things changed again. It was probably a lot to do with how much I enjoyed spending time with my sister. We watched Glee together, we went on our own little adventures, we shared secrets, and we laughed a lot. I opened up to her, and now as 20-somethings, I can still do that in a totally unique way.

I know that my sister has taught me more than anybody else I’ve ever encountered and not just through her perspective, which is often exactly what I need to hear. It’s also through the ways I’ve had to take care of her and she has had to take care of me, the frustration I’ve felt when I’m explaining something for what feels like the tenth time, and how she can sometimes seem wise beyond her years whilst the next minute show a vulnerability where she seems like a child. She has made me and continues to make me a better person.

When I’m having a hard time, she usually says, “It will be okay in the end, Sarah.”

So far, she has been 100% correct. 

To me, her wisdom on this seems to come from the fact that she has lived a life where seemingly simple things aren’t easy. Along the way, she’s faced some enormous challenges and dealt with more than her fair share of rubbish.

Living life alongside her is a lot of fun. It’s hard work. It’s having a best friend who also happens to be blood-related. It’s picking up Facetime to somebody pulling a silly face. It’s the squeal of joy when something exciting is about to happen. It’s sacrifice. It’s endless patience. It’s watching somebody continually defy the odds and do all the stuff you never thought they would be able to. It’s awesome.   

I find myself in a place now where, to quote Kelly Clarkson (who puts it much more eloquently than I ever could): “My life would suck without you.”

If you can identify with any of these challenges, you don’t have to be alone. Having a sibling with a disability is never straightforward, and I know it isn’t always a good or easy relationship. There is no shame in saying things are difficult, that you’re fed up with the situation, or that you need some support. Tell somebody how you feel. Find a support group. Offer up the love and care that you can, but make sure you’re showing the same to yourself.