This may be more of a rant than a note, you have been warned! And I should probably preface it by paraphrasing somewhat,
"real life, real love, acknowledges the ugly parts as well as the beautiful…"
Today (Mar 20th) is apparently World Happiness Day. It's also my Mum's birthday. A nice coincidence for a wonderful woman who through her in-exhaustive supply of love and kindess has brought much happiness to many lives. Tomorrow is my big sis Bairbre's birthday. Which is also World Downs Syndrome day. Another nice coincidence on account of....well, the obvious fact that she has Downs.
Every year as March 21st approaches, there's a plethora of articles about Downs Syndrome, usually from a parent of a kid with DS, who talk about how wonderful their life is, how they wouldn't swop their kid for a kid without DS, how they've learnt so much from their child etc. Or from someone with D.S. about how great their life is because they've been given a chance at it. It's rare that anyone says "y'know what, it's a bit shit, and I wonder what my life would be like without it."
It's rare to read an article where a parent has said "I wonder how different our kid would be without DS, I wonder how different our lives would be." It's rare to read an article from someone with Downs who basically says "it's not an easy life." For me, it's rarer still read an article from a sibling, but when I do, they fascinate me. Recently in the Guardian's "A Letter To…." a young woman wrote about growing up with her sister who had DS. It reduced me to tears, because I empathised so much with her honesty, with her love and admiration for her big sister, and with her heartbreaking frustration at her sometimes.
I can honestly say that I would be a different woman today were it not for Babs. Most of the kids in the estate had siblings close their age- I had Babs. It's a weird thing, to find yourself over the decades transitioning from the position of little sister to big sister as you both age. She has regressed so much over the last decade that I find it hard to remember that she once was so outgoing, such a leader, so cheekily vocal, so funny, and *such* a great big sister.
When I was a kid, I looked up to her, despite the fact that she was no good to me for most sports (it kinda takes all the fun outta football when your opponent in 3 &1 keeps collapsing.) She was smart, she was neat, she was mischievous (I'm pretty sure I can't take all the credit for our attempt to run away to Dublin!) and, unfortunately, she was more than slightly obsessed with Michael Jackson (hey, we all have our vices)
As a little kid, I just accepted that she was who she was, she was my big sister with whom I shared a room. It took a while for me to cop on that that it wasn't normal for people's sisters to collapse on a regular basis, it wasn't normal for people's sisters to go a special school, or for them to look and sound so different to everyone else. I don't ever remember saying it out loud, but I know I wondered why it had to be her, why it had to be us....why did we have to be the "different" family at the caravan park, why did we have to be the two who were left alone by other kids in the playground because they were too scared to come across to us.
I remember one holiday where we went to the kids tv room and I ended up in a fight with a total randomer because he kept kicking the back of Bairbre's chair and laughing at her. To this day, I still remember the surreal rage that came over me and the shock on his face when, instead of saying nothing/going off crying, this little tomboy beside the weird kid just got up and started trying to punch him. There were many little moments like that over the years, and I can't say that they ever got any easier.
One of the nicest things we ever did was go on a family Downs Syndrome Ireland holiday break to Mosney. Every family who was there had a kid with DS, every kid I played with was just like me, they were used to looking out for their sibling, but they wanted to just go and play in the playground too, without worrying about the looks or worrying about the jeers….Mosney gave us that over that week, and it was bliss.
Everything was wheelchair accessible, everything was open to us, the swimming pool, the crazy golf course, the cinema, the rides in the fairground, the ballroom…..it was an entire holiday park where you could do what you wanted when you wanted….for free!!(I may also be able to trace my fear of spiders back to that holiday too….sitting through the film Arachnaphobia on my own in the cinema at the age of 7/8 was not one of my wiser ideas…!) Still, it was for me, one of the happiest family holidays I'd ever experienced…I felt I was finally getting a glimpse of what holidays were like for my friends, just fun, happy, smiley times without worries of peoples stares, without the worry of what hospital was nearest if something went wrong....a holiday as it should be.
I guess part of the thing that bugs me about World D.S. day is that it always seems to paper over the cracks, to make it seem like life with someone with D.S. is all love and smiles. "People with Downs are always so smiley". "They're just full of love". "They're so child-like". Over the last 30 years, Bairbre has been all those things. She's also been absolute brat, and horrible to try and reason with-when she gets something in to her head, she gets into a tantrum. She's awkward, she's rude, and she can be damningly and frustratingly stubborn (although that last bit may be a family trait...!?)
I never read articles from people who acknowledge those shit times, those times where you wonder how different your life would be if that person in your life had been born without that extra chromosome. For me on a personal level, I know my patience would be non-existent. As an adult, it's rare my temper gets the better of me, but when it arrives, it's rather vicious and, if it were given the chance, violent too. (my punchbag can attest to that!) Growing up with Babs, there was 2 ways of dealing with a situation. One was to lose the head and freak out, thereby causing her to get more upset, causing you to get more upset, and a seemingly infinite loop would occur. OR you just stayed as calm as possible, attempted to fix whatever was going wrong, and got on with it instead of freaking out. That's made life infinitely easier for me as an adult-panicking takes too long, attempt to fix the problem and move on is now how (I attempt!) to deal with stuff. I know I wouldn't stay calm in a medical emergency had I not had years of practise watching Babs collapse so often. I know my appreciation for having people in my life wouldn't be there, because I wouldn't have come so close to losing someone I loved so much over the years.
I often wonder what kind of a woman she'd be now. Would she have emigrated? Would she have kids? Would we be close? What would she have studied at college? What personality would she have? Would we have been the kind of sisters that spent our teenage years hating one another before realising at some point in our twenties that a few years makes no difference? (a 4 year age gap as a teenager might as well be a decade!!) Would she have been as neat & tidy & ocd like about her music collection, or worse still for Mum & Dad, would she have been as messy as me?!
All those questions, the what if's, the alternate life we would've all had, will always remain unanswered. They're also usually left unasked, as society progresses, and over the decades, the notion that people with disabilities, both physical and mental, can lead fulfilling and happy lives is one that finally concieveable to folk, unlike when Bairbre was born and my parents were pretty much advised that she would never amount to much. I often wonder what she thinks herself of her differences now, whether she even thinks of it anymore like she used to, or whether she, like the rest of us, can imagine no other world.
The only thing I can empathise with in all those saccharine sweet articles is that, our lives could not be what they are today without her. Everything we have achieved as a family, as individuals, has been shaped by her mere continued existence. Try as I might, I cannot feasibly imagine what life would be like without her....I cannot imagine what we'd be like as a family without her. She is our light relief, she is our glue, she is, quite simply, our everything.
Shortly, she'll be 35. I didn't expect to see her make 25, never mind have 35 in our sights, and for that, I'm truly thankful. A quote from a favourite series of ours comes to mind, and while it's one I have no problem agreeing with in my life, I often wonder would she feel the same.
"If Aslan gave me my choice I would choose no other life than the life I have had."
