Every year I find myself having this same period of reflection about the significance of World Down Syndrome Day. I often wonder if I would even know what World Down Syndrome Day was if it weren’t for you or would it just pass me by like any other day. It’s not a day that defines us as brother and sister, but it is a day that highlights how you have helped define who I am as a person.
I don’t remember when exactly I learned what Down syndrome was. I suspect there was no ‘moment’, it’s just one of those things that has always been. I do remember the first time someone treated you differently because of it; the first time my fierce protectiveness was called into play. I was eight and you were ten, walking into our new school in our new home state for the very first time. The details don’t matter anymore, but what does is that it was the day I realised change was needed and that I wanted to be part of it.
What that part would be has evolved over time but the core of it is finding and using opportunities to make people aware of the potential of people with Down syndrome and other disabilities. Not special treatment, no free passes or handouts, but an understanding that a disability is just part of who some people are and that when it comes down to it everyone is a person first and should be afforded the same rights and opportunities.
I’m not sure what direction my life would have taken if it weren’t for you, and I’m glad I don’t have to figure it out. You’ve given me enough purpose to last a thousand lifetimes and for that I am so grateful. You’ve taught me lots of other lessons too, and now seems like the right time to thank you for those as well.
The most important thing is believing in yourself
I remember when you retired from international swimming; a swag of medals under your belt, lots of stamps in your passport and even a few world records. “I’m going to be a bocce champion now” you said. I’m sure we encouraged you to try your best but I don’t know that we had any real expectations. Fast forward to less than 2 years later and you’re winning gold at the National Games, firmly cementing the idea that if you say you’re going to achieve something you will. You well and truly took your spot as the most talented member of the Carr family only a few weeks ago when you were selected to represent Australia at an International golf tournament in April. I’ve always joked that the gene for sporting talent must be located on chromosome 21 but the truth is some people are just natural athletes and you, my brother, are certainly one of them. If we ever need a reminder we can rely on you to tell us so too!
Big brothers will always look out for their little sisters
I always knew that my future husband would need to pass the ‘Ben test’. Thankfully I picked a winner in ‘your mate’ Nath – who you described in the speech you made at our wedding as ‘not just my brother-in-law, my true brother’. That doesn’t mean he doesn’t still get the warnings of a protective big brother, even after 14 years. The note in his recent birthday card? ‘Look after my little baby sister’. I’d hate to see what would happen if he didn’t!
People with Down syndrome can be jerks too
I always laugh when people say that ‘people with Down syndrome are so happy and loving all the time’. It’s such a well-intentioned stereotype but my goodness how far from reality it is! The eye rolls if I dare to interrupt a DVD or footy game, the choice words you’ll mutter under your breath if we ask for help with something, or my latest favourite – the ‘I am not happy with you’ text I received when trying to explain that streaming videos chews through your mobile data quickly, as if I’m the one who made the internet work that way. You drive me crazy sometimes but I wouldn’t have it any other way. I love that you don’t just say yes and do what other people want you to, and surely big brothers and little sisters should always annoy each other a little bit!
Everyone should have that ‘one thing’
The thing you love more than life itself. You discovered yours, AFL and the West Coast Eagles, at such a young age I can’t remember you ever not loving them. When you were eight, after more than a year of being pen pals, your favourite player, Peter Sumich, invited us all to his Mum’s house for lunch on a visit to Perth. I’m not sure if that was an intentional strategy from the Eagles to make sure you stayed a fan forever but either way it’s worked. You might not remember what you had for lunch yesterday but if we want to know who wore number 27 in the 1992 Grand Final you’ve got us covered. It’s worked in our favour too – trying to get you to try new foods as a kid? ‘that’s Sumi’s favourite food!’, encouraging you to go to the gym? ‘Nic Nat goes to the gym to get strong!’.
Once you’ve made up your mind you should stick to it
You’re a stickler for routine, and dislike change of any kind. Some might say that’s being stubborn, I just see a man who knows what he wants. You have some funny ideas about the way things should be and there’s no chance of changing your mind. My favourites include:
- Setting your alarm for 5:19 if Dad is driving you to the train and 5:18 if it’s Mum’s turn
- Only eating cheese and tomato ‘in public’
- Needing to rub Spud the dog’s head for good luck before bowling (and blaming him for an off day!)
- Going to bed early before an exciting day because it makes time go quicker
- Refusing to eat even one piece of popcorn before the movie starts, as if it were against the law
- The iPad being your one source of truth for any fact, no matter how good our information
- Signing every birthday card for the past 15 years as ‘Chandler Bing’
I could write a book of ‘Ben stories’ but the short version of all of it is this:
You make me laugh (a lot), sometimes you ‘make my tears come out’, and every single day I feel proud that you are my big brother and I am your little baby sister.
PS - Thanks for helping me pick your favourite photos!