Written by Ruth Usher
Last Spring a friend and I packed the kids up on a Wednesday afternoon and took off to Currumbin Beach to see the Swell Art Sculpture Festival. I had never been before and I truly was blown away by the quality of work before I even found a car park. Some of the sculptures are huge and with such intricate detail, I cant believe the enormity of them and that I’ve lived here for over two years and this year is my first visit.
It was one of those balmy spring days when you would think it was summer, everyone was in shorts, those without kids had drinks in their hands (those were the days), all the kids were on scooters and most had an ice-cream in their hands. Oh my goodness the ice-cream vans… Too many ice-cream vans… Word of warning if you ever go, there are 3 ice-cream vans, if you walk up and back along the path you’ll pass 6 times. If every time you pass each child asks for ice-cream that’s a whole lot of saying no, for us it worked out as approximately 18 no’s as a minimum. Do yourself a favour, go with CASH, buy an icecream at the first one and save yourself a whole lot of bother, be the parent that said yes not the one who repeatedly said no for an hour and a half!
About half way along we found a nice grassed area and sat and had our afternoon tea, again don’t go to the effort, save yourself the hassle, buy an ice-cream! My child decided a play on the beach was in order, I outlined the rules; no getting wet, one rule, that’s all, not too hard to follow, you’d think! I had no towel or change of clothes for this scenario, you would think living at the beach a towel in the boot would be mandatory, it’s one of those things you only think about at that moment when your child is dripping wet and shivering… Which is about now! No sooner had he left me than he was neck high in surf, in full school uniform, lucky it was balmy and that his mum is easy going (now)! We resumed our walk and the kids had an absolute ball running through the exhibits, posing for pics and shaking their heads at the ones that made no sense (Umm like below).
Nic and I chatted and laughed the whole way comparing the ever long list of development for our bubs that we were pushing. Things were all very light and fun then I noticed out of the corner of my eye two ladies coming toward us, one who clearly had Down syndrome, who looked remarkably (scarily so) like my daughter, a fine boned petite face, small frame and shorter than those around her. She was an adult, I’m not sure of age but knowing that people with Down syndrome age differently I would say 40’s, even 50’s? She was with the other woman who must have been her (I would say) younger sister. They were holding hands and the sister was talking to her. Its at this point I had to look away, I wanted to say good-afternoon just in passing, as I would to anyone else but my emotions had got the better of me. I didn’t want them to see me welling up with tears, I didn’t want them to think I was thinking something negative as this wasn’t my intention.
I’d been caught off guard, my emotions weren’t prepared to go here today! I love my daughter more than life itself, this is not the state I want to be walking through a public place, a very public setting at that. My head took off; is this what Eden will look like when she’s aging? I don’t want her to age prematurely, I’m in my 40’s who will hold her hand in public after I’m gone, will Israel, will his wife, who’s she gonna live with? What life has this lady lived, was she teased at school, was she institutionalised, did society accept her, what’s her story? What did this lady do today, does she have a job or was she waiting for her sister to come home all day? Oh my goodness Eden doesn’t have a sister, we need to have more children, what if something happens to Israel? Will she marry, will his family love her, will they love her like I love her? Will people in the street turn and cry while she walks past… Its at this point I slapped myself across the face, figuratively speaking of course. My friend and I stood on the side of that path, both crying, children playing around us, Israel still soaking wet and onlookers taking a wide berth around us.
I know there’s no guarantee for any of our futures, I know all of our children will face adversity of some kind. I wish I didn’t worry about her future, but the truth is I think all parents of children with special needs do, the stakes are high, the ‘what ifs’ are huge. As much as worrying gets us nowhere there seems to be so much to worry about; are we earning enough, is there enough support systems in place, how long will government initiatives last for? Sure I don’t lie awake at night stressing but these questions are at the fore front of every decision, where to live, what school to go to, what church to invest in, who to vote for, how long will I work, how can we earn more, the list seems endless. Maybe as Eden grows I’ll become more comfortable with her future, I sure hope so.
I tell myself that Edens future is bright, and I do know it is, never has there been a time like now for people with Down syndrome, with early intervention and some hard work, her future is promising. I know she has a family who love her soooooooooooo much, I know she has a community who know her story and love her for who she is, in fact they embrace her diversities. More than anything I know she was created ‘Perfect by Design’, and in a world where there’s a whole lot that doesn’t make sense, there’s a God who does make sense. So for now Matthew 6:34 is it for me
So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today.
And lets face it, the futures so bright she’s gotta wear shades.
(all SWELL pics used were sourced from google images)