I never thought it was possible to happy cry three times in a row, watching the exact same performance, knowing what was coming and still I found myself wiping away tears.
Recently I was given the great privilege of being the speaker at a show put on by my old high school. It was organised to fundraise for the special education unit there, by the kids and their teachers, for a school camp that is catered especially to them. I spoke about perfection and how I’ve been changed by my interaction with kids who have disabilities or ‘super powers’ as we like to call it. Following is a bit of what I said. It’s my story about how some kids with superpowers changed me and a message for everyone who has a super powered child in their lives.
When I was 17 I left my hometown and all by myself, I moved to Hong Kong. On the outside I was a happy girl but when I left I was battling something invisible. I constantly battled with my struggle to look how I thought the world wanted me to look. A dark force told me I had to be perfect.
I travelled across the world to Hong Kong to work in an orphanage. My thought was that I would be looking after babies for a year, cuddling them, changing nappies, burping and rocking them to sleep. I would be changing the world and while it wasn’t the only reason I went I think inside I hoped that maybe I would find a little more worth for myself while I did it.
When I arrived I found out I wouldn’t be with the babies, instead I would spend the year working with the orphanages older kids, the ones who were from two to six years old. The ones who hadn’t been adopted because they weren’t ‘perfect’.
It was a crazy year. Can I be really honest? At first, I really didn’t enjoy some of the things I had to do. David* had a severe cleft palate and as I fed him, everything would come back out through his nose. Jessie bit and scratched me when I tried to change her. Noah’s tubes would leak and wee all over me as I did his catheterisation four times a day. Adam would bite himself raw. Aaron struggled to adjust to his cochlear implant and would scream at the slightest adjustments. Flynn repeated everything I said. The list when on and on.
But with every day that I served these children, something happened.
Yes, my patience and tolerance grew, yes my knowledge and awareness of issues surrounding disability grew, but even more than that, a deep love and acceptance grew wildly. Deep love for these children who were so far from perfect. I wasn’t changing the world. Something invisible was at work. Some power they possessed was changing me. I came to a solid unshakeable understanding that there are all kinds of perfect.
When we went out, to the park, on the ferry, to the shops, I would see how wrong society was for judging ‘my kids’. Society only saw the strange behaviour, the differently shaped faces, the low muscle tone and the fluttering hands. They didn’t see how those same little hands would come and wrap themselves around my legs, how the little faces looked up at me eager to see that I was proud of their latest achievement. Society didn’t see how when I lifted Noah out of bed for his last catheterisation of the night, with the lights dimmed, he would tangle his fingers in my hair and softly kiss me on the cheek. Every one of those children had some indescribable force. Their difference was powerful and each of them in their own way altered me.
Now 15 years down the track, I also have a nephew, Marco, who is using his own special super powers and I am being invisibly beautifully altered again. Other people see a wheelchair and seizures. I see a boy who adores my earrings and who helps my own children to understand the true meaning of inclusion. I am so grateful to Marco for bringing me a deeper relationship with my sister and forever increasing my depth of love and admiration for her. He is an incredible force for change in our family and the community.
Every one of us are altered by our interactions with the incredible super powered children that grace our lives. Everyday they show up in all the brilliance of who they are and we are richer for it. All around me I see parents, siblings, grandparents, friends and teachers who have been altered and who work to made sure the world can see the greatness in every child. You may not have chosen this path, and it’s certainly a life less ordinary but that’s what superheroes do. They live a life less ordinary. They see things differently. They challenge the status quo because they know that there are all kinds of perfect. You are those heroes too and today I thank you for all that you do.