Almost since the day Ezra died – over a decade ago – I have been at the helm of a nonprofit focused on changing our story for the next family.
As 2022 begins, I will shift from staff to a board role at the Beat Childhood Cancer Foundation.
I leave my post as Executive Director on friendly terms, proud of what we have built so far these past 11 years, and glad to continue my involvement through a seat on the board.
Our team has grown, and I rest in an assuredness we will continue to make astounding forward motion in our great aim to make sure every family hears “we know how to beat this” when their child is diagnosed with cancer.
I am writing from a creaky chair in a cabin in the Blue Ridge Mountains, tiny squares of window screen adding texture to my view of misty mountains I wish I’d been able to take Ezra hiking in.
It is quiet.
Most of the crew we came with are out hiking in the soft gray rain, and I have time to sit and write this post I’ve been putting off.
That year Ezra died, Charley’s twin Price died as well.
All my life, I’ve been good at things. Stuff just made sense to me; I could pour effort into challenges and solve them.
But my sons died, and I broke alongside the love of my life, her brokenness magnifying, for me, the shocking STOP to Ezra and Price. I began my exploration of and intimacy with tragedy.
Many pieces of Robyn and I went into starting what we first called Because of Ezra. Surely I could pour effort in and solve this – if not for my sons, then for yours. I could connect the right people… find the places to yell, the places to finesse, see the weakness in our enemy, demystify the complexities… build and build and build the dollars and passion and effort to firehose strength and figure out where to point it all.
Suddenly none of the things made sense, and I had to find a way to bring some sense of understanding back. I count that as naiveté at best now, probably closer to pride or control, but it held mightily in my motivation to continue the fight we were 13 months into already. Ezra’s fight, and ours too.
We could remember Ezra, and we could spend time with people who felt the things we felt and know we weren’t alone in this shattering grief. Robyn talks about the honor and deep gratefulness she felt to all who worked to make possible the advancements in medicine that were available to Ezra. We could be a part of that for other families, pushing results even farther. Robyn could continue to be Ezra’s mom.
Thanks to a brilliant cast I am impressed to know, we have done a lot of this. There is urgent work to be done – kids are dying still – but the reality of treating childhood cancer is better right now than it ever has been. Time has cautioned me toward humility, but I am deeply proud of being a part of these results.
Still, it is wearying work. I am tired, and the unflinching proximity to hard things weighs on me.
Just writing that sentence makes me want to delete it, to be stronger, to carry a burden because it deserves to be carried.
Comfort has never been my highest priority, and the pride I fight against sings strong when I consider my ability to Keep On. But idolizing hustle comes at a cost, and I am looking forward to lightness and time. To focusing on Charley and his needs. To reading, and hobbies, and to making Robyn laugh until her sides hurt. To celebrating her and praising her like I should. To dates and trips and weeks going by with nothing much going on.
That’s less about a job, and more about my approach to a job which carries the weight of our son, and of so many other sons and daughters.
In short, I suppose… it is time.
To my friends and colleagues in the childhood cancer world – I’m not going anywhere. Reach me on any of the ways you have before – they all still work. I remain on the board, and am excited about all the irons in all the fires. Getting drugs FDA approved. Precision medicine. Technology’s exponential role in how we understand and beat cancer. The storytelling we believe in strongly. It is all STILL working, and we are a bold crew.
To my friends outside the childhood cancer world, hello. Text me. Let’s grab a plate and a glass.
On Robyn and I’s first date, she said she wanted to open a coffee shop.
In March of 2020, she did – a drive-thru only concept called White Duck Espresso, in New Port Richey, FL. She’s got two more leases signed – we expect to have 3 locations open by summer.
It’s been the best part of the pandemic – watching Robyn’s eyes light up as she’s grown White Duck to a truly magical place which is more than caffeinated drinks on the go. Getting to know the White Duck crew, who are unmatched and our favorite part of White Duck. It’s a family of creative and caring people, already with a cult following (if I can be so bold) of people who leave reviews saying things like “I just came by White Duck today because I had a tough day, and I knew the baristas would make it better.”
I am looking forward to my next decade of work being in a supportive role of Robyn while she grows her dream business. She is really good at it, she takes my breath away to this day, and I just can’t stop smiling.