On my right sat an inspiring young tennis champion and, next to him, a nervous young mother. Well over a hundred people had arrived to listen to us despite the chilly Sydney night. The event’s organiser welcomed the crowd and began to introduce me as the first speaker. My mind focused on one thought, “How did I land up here?”
I had spoken publicly in Sydney before. I have lectured across Australia multiple times. Nothing about this trip was the same. It may have appeared like any previous speaking tour, but everything was different.
This was my first return to the international speaking circuit after Covid and my first overseas speaking trip since receiving Shaina’s diagnosis. As excited as I was to travel and teach again, I was equally nervous. My travels brought anxiety about what might happen to Shaina while I was away. I knew there was no logical reason that something would go wrong because I would be away- but parental nerves don’t conform to logic.
On previous trips, my favourite lecture topics had been relationships or spirituality or the spirituality of relationships. I enjoyed addressing ordinary audiences as a typical rabbi. This time, my talks would draw on my experiences with Shaina’s condition, this time the audience would include the families of children with challenges. I would also launch Shaina’s kindness campaign at some of Sydney’s Jewish day schools.
The largest of those events found me sitting next to the tennis champ and the nervous mom. We were there to share our stories with the Sydney Jewish community. My new friend, the tennis player, was a Paralympian who twice represented Australia in Olympic wheelchair tennis. He related his story of teenage cancer and the physical hurdles he has overcome to become an athlete and motivational speaker. I told Shaina’s story, explained our kindness campaign and distributed her kindness coupons. The third panellist shared her son’s rare disease diagnosis publicly for the first time.
It was a powerful evening focused on awareness, compassion and inclusion.
As I addressed ten different audiences over the next three days, I was no longer a typical rabbi but a representative of the world of disability and rare diseases. It is a new space- unfamiliar and daunting. Elements of Shaina’s story crept into almost every talk. I built some of my material solely on lessons learnt from our journey with Shaina. People were deeply moved, as was I.
When we first realised that Shaina’s speech would remain limited, we understood that we would have to speak for her. We would have to advocate for her to doctors, at school and in public.
I decided that I would also give voice to her inspiration. Shaina teaches us daily, and I try to share those lessons with others. In Joburg, people know Shaina, which makes it easier for us to share her teachings. Sydney showed me that Shaina even inspires people who have never met her.
And that’s how I got to be there; on a panel addressing disability, rare diseases and inclusion. I had not asked to represent this unique world and would have turned down the offer had it been my choice. It is often daunting, always rewarding and now central to my role as a rabbi. I only hope to be a worthy bearer of Shaina’s message to the world.