This was the beginning: a conversation a few months after Joe’s funeral. How do I keep my promises with him? How do I make everything mean something? He left me a list that I have no idea how to even begin. I think of what he would do, how he would do it. That was my first step.
Joe died 13 years ago this past Saturday.
This year, Joedance gifted its largest single donation to Levine Children’s Hospital in our history. Over these 13 years we have funded clinical trials, summer internship positions, a research technician, and much more. Slowly but surely, we have ticked off the list of goals Joe made all those years ago.
Maybe this was the start: that first weekend in August, the nights were still hot and sticky. We started later than planned because we were
struggling to get the audio equipment to connect. We collected donations in a shoebox I hastily covered in printer paper earlier that day. There was maybe two dozen of us, all neighbors. After the film screening, late that night, I counted what would become our very first donation.
The easiest part is remembering why we do this. For the families struggling now, for the families who are still surviving what we went through. We work hoping that each new family faced with this reality of childhood cancer would be the very last one to be receiving the news. The hardest is knowing how slow it is. The reality of knowing that no matter how hard we work, the goal is mostly likely out of our immediate grasp. So, we focus on the smaller things we can change now as well.
Always, always, keeping our eyes to the horizon.
Perhaps the beginning was here: I was sitting on the edge of my bed. Joe was on his back in the center of the mattress. His hand held mine loosely. His eyes were glazed as they had been for weeks, a slightly faraway look to them.
“I don’t want it to be a walk.”
“I got it, no walks.” I squeezed his hand tighter. “I promise.”
We look backwards to continue moving forward. Joe’s list is finished, but it is still our lodestone as we continue to build Joedance towards a future.
In the end, this was how it started: a shrill cry piercing the longest night of the year. Eyes squished tight, wrinkling his pudgy face. A small arm slipped free of his swaddle, reaching for something that isn’t there. Mike is nearby, we are both looking down at him. I never knew what it meant, but feel it anchor me immediately – there is nothing I wouldn’t do for him.