He’s done this before. I’ve lost count now in the past 10 years as to how many times exactly he has done this. He has been in front of different audiences:
One hundred NF families
Fifteen 2nd grade classmates,
Twenty pre-school children
Three-dozen sales engineers
Several hundred professionals at conferences
And now, in front of thousands from all over the world
Last Monday, Jack did it again. I never get used to it. I never just watch it happen as a matter of course. We knew he was receiving the 2020 Humanitarian Award from the Children’s Tumor Foundation. We knew there was an expectation that he say a few words. He knew that too. A few days before, Beth and I had asked him what he wanted to talk about. What were some general themes? He wanted to think about it and get back to us. He did return with his 5 or 6 themes and we began to write it with him. Sentence by sentence we wrote his message. There were lots of edits. There were discussions around words (“I don’t like the way that sounds. I like this better. What about this?”) I loved watching him create his message.
We got it to the point that the day before, we were ready to rehearse and run through it to be sure it was what he wanted. Our great friend, Duane Codrington set up our living room like it was a broadcast studio including lighting, backdrop, teleprompter and camera. We started the rehearsals. Duane could not have been more of a help to get Jack positioned to deliver his message. Rolling it through, changing the words, adding the words, pacing it. Because it was virtual, Jack also had to be communicating with the team in New York. He had to be ready when Dr. Annette Bakker “threw it to him” live so he could deliver the speech. THAT my friends, is what it is all about-DELIVERY
Jack was put in the chair. He had the words and they were his. In fact, in true Jack fashion, he changed some things up until show time. All of the rehearsing, the words, and the preparation help get you ready but in the end when the lights go on, you’ve got one shot.
I heard from so many people that I thought my phone, my Facebook and my Twitter pages were going to shut down. SO many adults saying how impressive he was WHILE he was still going. Many of them commenting on how well he was doing and that, “I would be nervous as an adult, never mind as a 15 year old! “How does he do that so well? I could never do that”.
Some people were being nice, still others were being dead serious and I agree with them both. But here’s the thing. This is real to Jack. This is a big part of his life. He wasn’t presenting sales numbers to the board. This wasn’t a presentation about organizational structure and personnel development at a company. This was HIS story. It is THE most personal thing any of us could ever do. Putting oneself out to the world with your vulnerabilities laid bare, sharing those in the most open and honest way while LITERALLY challenging them in real time.
Let me explain. One of the issues for Jack is low muscle tone, which gives him challenges around what I would call regular breathing while talking. Most of us don’t think of this at all because it is not an issue. Our lungs and our diaphragm deliver what we need seamlessly so we can “get our words out”. With Jack, it is a bit of a struggle and something he works on. Now add to that ANY kind of anxiety of speaking to an audience of any size and you come to understand the courage it takes to do what he did.
As his father, I can’t comprehend how many things he overcomes once he sits in the chair to deliver a speech like that. I am not trying to be melodramatic when I write this. It is true. In sales, we often say just get me in the chair and it is up to me to close the deal. What he did last night was literally that. We had the words, the set up, the speech, the teleprompter, the audio feed, all of it. NONE of it mattered unless Jack stepped up with his MOST personal of stories and then deliver.
I spent some of last night and will spend more time tonight reading all the feedback from people. I am so proud to be his Dad. While the speech was an important milestone, inclusive of a $300,000 contribution toward research with our partners at CTF, it is just another step toward the goal…to ENDNF! We got a lot closer. Awareness was raised. Awareness leads to dollars, which leads to a treatment and a cure. Stay with Jack.
Tomorrow there is hope and YOU are among the reasons why.
Don’t ever forget that. EVER. #ENDNF
Thanks,
Jake, Beth, Jack, Luke and Grace
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