All About My TED Talk

Hello friends,

When I began this journey two and a half years ago, I had no idea where it might lead. I certainly would never have guessed that it would take me to the TED Conference in Vancouver — where last week I gave a talk about our five years with Nadav. It was completely unexpected, an incredible honor, and an amazing experience.

To be honest, when I was invited to speak, I didn’t really think about the conference itself. For many people like me, a TED Talk is an embedded video, shared on social media. But the gathering was incredible. Over 1,500 fascinating, welcoming people. Hundreds of meaningful conversations. And 90 other speakers, each as freaked out as I was. (They did a pretty good job of hiding it, but you could tell.)

The centerpiece of the conference is the main TED stage, a surprisingly intimate and warm venue. It’s constructed entirely out of native hemlock and fir, which gives the air a comforting, woodsy smell. My favorite place in the entire building was the backstage area, dark and bustling. Away from the crowds, it was an oasis of calm.

I went on Wednesday, right before lunch. I’d be lying if I said I wasn’t nervous; this was the TED main stage, after all. But I was also filled with joy — the same joy I feel whenever I share our story.

People ask me if it’s difficult to speak about our experience, reliving it again and again. It’s not. It’s a blessing to spend time with Nadav, and introduce him to a room full of strangers. It’s a privilege to share what we’ve learned with others who might find it useful. And honestly — it’s wonderful to re-immerse myself in a world that we no longer inhabit. I miss it terribly.

I shared a ton of photos on the screen — nearly thirty slides worth. Someone told me afterwards that the effect was like seeing a family album, which was great. I wanted to help people understand that our story was as much about life as it was about death.

The entire talk felt like a dream, almost like an out-of body experience. I’d rehearsed it to death, so much so that I worried about it feeling robotic. In the days before the talk, I changed things up: I buttonholed strangers and told them my twelve-minute talk over a cup of coffee. When I was on stage, I wanted it to feel like an intimate conversation.

Did it work? I have absolutely no clue. I watched the video afterwards and all I could see were pauses, weird tics, and some anxious pacing. Other people told me it came across as really natural and I hope they’re right. It was pretty terrifying.

The response after the talk was electric. Like most of the other TED speakers, I got a standing ovation. But the most gratifying reactions were from the many people who came up to me afterwards, thanking me for sharing our story.

This was the first time I’d shared my story with people who had no personal connection to the topic, and I was nervous that they wouldn’t be able to relate to it.

But it was completely the opposite.

The most meaningful comment came from someone I met on the last day. “I have two friends in similar situations, and I’ve never been able to talk to them about it,” she said, “Now, I get it. Thank you.”

I wanted the audience to understand why Nadav’s life — as short as it was — was not a tragedy, but a privilege. At the same time, I wanted them to get a new perspective on what it means to be human, and face the unknown. And I think I pulled it off.

Of course, my people were there too. A heart mom whose 16-year-old was living with a Fontan. A handful of parents who knew what it felt like to have kids with similar issues. In fact, the photographer and sign language interpreter assigned to my talk both had children with medical challenges caused (in part) by genetics.

I made dozens of new friends as well. Gabriella Di Laccio, a soprano from Puerto Allegre, whose own talk included the most incredible moment of the entire conference. Jessica Irwin, who completely changed how I thought about disability. Daniel Lismore, the best-dressed attendee, whose warm encouragement calmed me down. And many more.

And yes, this being TED — some famous faces. Mark Rober, who literally exploded onto stage. (The selfie below earned me a “wow - cool!” from Nadav’s twin brother, now 14.) And Leopoldo Lopez, the Venezuelan opposition leader, who promised to plant his oregano seeds once he returns to Spain.

(No, I didn’t get to say hi to Al Gore or Monica Lewinsky, both of whom were there. Although I did get some good gossip about the Clinton White House from another source...)

I’m told that the talk will probably be released publicly in mid-June. Until then, I’ll be busy following up with the many people I met in Vancouver. I’m really excited to see where these new paths lead.

In early May, I’m going to be traveling to Houston to deliver the Hugh Allen Lecture at Texas Children’s Hospital. Later that month, I’ll be heading to Washington DC for Every 100th Heart’s first National CHD Advocacy Summit. It’s the first policy meeting I’m attending, and I’m very excited to learn more about that world.

As always, I’m thankful for all of your support and encouragement along the way. If we haven’t connected in a while — please reach out. It is always wonderful to hear from you.

Best, James