“The centre of human nature is rooted in ten thousand ordinary acts of kindness that define our days.”
– Stephen Jay Gould
Since Ethan was diagnosed with ependymoma in January last year, Christie-Lee and I have been overwhelmed by the kindness and generosity of our family and friends – and in some cases of complete strangers – who have been touched by Ethan’s story.
This is the first of, hopefully, many semi-regular posts on the acts of kindness which have, in a number of different ways, brought a little bit of sunshine into our lives at a time when things have been pretty tough.
So here’s the first one.
Back in the days before Ethan was diagnosed, at a time when Christie-Lee and I still pored over books and government-issued pamphlets on how best to maximise our child’s potential, and agonised about developmental milestones, Ethan’s favourite thing to do at the end of the day was watch his (at the time, one and only) Wiggles DVD.
Allowing your not-quite-two-year-old to watch DVDs for any length of time is, of course, contary to everything the literature says and not something that Responsible Parents do. However, whether by reason of the subliminal messages embedded within “Toot Toot, Chugga Chugga, Big Red Car”, or just seeing the enraptured delight on Ethan’s face while he watched the DVD, we rationalised that an hour at the end of the day wasn’t too bad.
Eventually, of course, Ethan’s interest in the Wiggles developed into a full-blown fixation. We started accumulating Wiggles merchandise, and learning the songs. (It’s Greg over Sam for me, and does anyone else think that Henry the Octopus sounds like Julia Gillard?)
I often wonder what the me of 10 years ago would have thought of the daddy-me doing all the actions to such Wiggles classics as “Rock-A-Bye Your Bear” and “Can You Point Your Fingers and Do the Twist?”.
Of course in retrospect our earlier concerns about over-exposing Ethan to the idiot box were entirely irrelevant: for the first few months of last year, Ethan spent countless hours immobile in a cot at PMH (either because he had an EVD in and had to remain still, or because he was too weak or sedated following his major surgery to move) watching Wiggles DVDs.
I will always be grateful to The Wiggles for their capacity to make my son smile (even on the worst days), and I remember the happiness I felt every time Ethan attempted a dance manoeuvre (albeit lying down).
Of course, I desperately wanted the shirt for Ethan. But it was there to raise funds for the Scholarship. I was worried that if I placed a bid for it then nobody would want to bid against me and, to be honest, at the time it wasn’t in our budget. I remember when the shirt was being auctioned at the launch, my dad was offering to go halves with me – but I let it go. At the time I didn’t even know who had bought it – only that it went for about $600.
You can’t imagine how shocked and overwhelmed Christie-Lee and I were when, at the end of the launch, Stuart and Susan Buckby gifted the shirt to Ethan. Stuart and I had played a bit of cricket together at Leeming Spartan. I’ve only seen him occasionally in recent years and I had no expectation that he would even come on the night. Stuart and Susan’s generosity was a real highlight of the launch, and meant a lot to us as a family. And it is a great example of the many acts of kindness which have touched us during Ethan’s journey, and made our journey with him just a little more bearable.
(At this point I’d also like to extend a plug to Stuart’s civil engineering business, Buckby Contracting, which has been a sponsor of both the Leeming Spartan Cricket Club and the Bull Creek-Leeming Junior Football Club. If you need the types of services that Stuart can supply, please look the business up – the sustainability of the Scholarship relies in part on you supporting the people and businesses who support us.)
As I’m wrapping up this post, Ethan is in the living room having his lunch NG feed. I let him choose which DVD he wanted to watch for the hour it takes to finish the feed. He chose “Getting Strong”, and that’s basically a summary of Ethan’s progress since he finished treatment. It is my dearest wish that that progress continues (fingers crossed for the results of last Thursday’s quarterly MRI scan).
And Ethan still very much loves the Wiggles…