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09
Aug
2018

Running for Amity: Jazz's Story


 

Amity was a flower girl at Jazz and Justine's wedding day.    

By Jazz Twemlow

The first time I met Amity, I was a little nervous. I’d been told by my partner, Justine, that her parents were “very lovely about getting new people to be hands on with their kids, so you’ll definitely be asked to get involved.” There were no babies in my family and I was the youngest of three, so I’d never had to properly babysit or entertain kids before.

Sure enough, after dinner, it got dark outside and somehow the kids magically teleported into their pyjamas. Soon there was mention of “bed time stories”. A coin was tossed: Justine got Atticus, and I got his younger sister, Amity.

I secretly knew Amity had scored a bum deal, but she was having none of it. She bounded onto the sofa and immediately docked with my shoulder into a genuine, happy cuddle, peering at the book she had brought over and placed in my hands.

There was no selfishness or sense of creeping boredom at my somewhat lacklustre delivery. Instead, there was a tacit understanding of “We’ll get through this together, you’re doing fine, I won’t judge.” Every line I read was met with a satisfied, beaming grin, but also a tacit, unspoken reassurance. My energy picked up.  Soon we were both having a great time. I’ve never been able to properly articulate the sense I got from Amity in that moment. It was like she was silently egging me on. She was giving something to me rather than the other way round. It was an energy and magnanimity that belonged to someone ten times her age. Knowing her parents better now, that makes perfect sense to me: that she would have their innate capacity for empathy and unselfishness.

After that, I looked forward to seeing Amity more. Along with her patently giving spirit, other traits became clear: a cheeky and creative sense of humour. Another visit resulted in her demonstrating a comedic ability to fuse “poo”, “fart”, “bum” “wee wee” and “face” in ever craftier and lengthier combinations. She cracked me up.

Amity wasn’t just generous and funny, she was also fearless. Jack and Mary Ellen speak of her physical adventures, clambering up trees and hanging from her legs on a spinning clothes line. At mine and Justine’s wedding, as a flower girl, Amity, knowing the instructions from Justine on the timing of how to walk down the aisle, stood her ground against “Grandpa” when he, unwittingly, issued a different set of instructions, right as the ceremony was beginning. What a conscientious, determined little girl she was.


Jazz and Justine's wedding day. Amity is at the centre of the photo. 

About a month away from becoming a father myself, while on a little “babymoon” with Justine, the news came. Amity had a form of brain cancer: something with a long, complicated name (Diffuse Intrinsic Pontine Glioma, or DIPG) that immediately sounded as alien as it did threatening. Justine was on the phone and I could hear Jack howling in grief on the other end of the line.

I’d never heard of DIPG before and was shocked to learn of its futile, excruciating prognosis. It eventually takes everyone who has it. A bleak reality made all the more terrifying when you realise that “everyone” means “children”.

The whole family entered a grim, agonising limbo as this cruel thing incrementally stripped Amity of all the traits that made her such a joy. There’s so much you wish you can say during that horrible, slow descent, yet so little you feel able to. A thousand things unsaid remained in the air each time I visited her and her family. I regret much of my inept silence. 

Everyone was robbed of something precious when Amity died. At her funeral, Mary Ellen spoke of her gift for mimicry. I’ve always loved doing impressions and I can already see the same ability in my own daughter. I suddenly knew I had lost a future co-conspirator and my baby girl had lost a friend, guide, and comedic inspiration.

I only knew Amity for three years, but the cruelty of DIPG means that this was long enough for me to know Amity for half her entire life. That realisation is one of the reasons I’m running on Sunday: no one should be able to refer to “three years” as half a person’s life. The other reason is, obviously, for Amity. Both for the joy she brought and the pain she suffered that no child should have to suffer. For the parents yet to come who shouldn’t have to lose a loved one as young, bright, and spirited as she was.

There’s so much to do: the statistics around DIPG haven’t improved in the last forty years. Given its fatality, that is an unacceptable stagnation in our progress. Please donate to help fund more research which will, one day, end the kind of stories like the one I’ve just told above.

Thank you.

Jazz is fundraising at the Sun-Herald City2Surf 2018