Our first big fundraiser was put on by our dear friends Steve and Marcey in Greenwich Village, NYC. We were at Sullivan Hall and a band called Hot Lava was kind enough to donate a performance...then they were even kinder by letting me (Steve) go on stage with them to play harmonica on "The Weight." While I was up there, I took the opportunity to explain what Duchenne Muscular Dystrophy is and to thank people.
After the song, a friend was leaving so I stepped out onto the street to say goodbye. About a minute after I came back in, I felt a very large hand on my shoulder. I turned around and looked up, and up again at a man who may have been twice my size...the bouncer. My first thought: "Oh man, I didn't get my hand stamped and now this guy is going to throw me out on my ear..."
He smiled, "You were just on stage, right?"
"Yeah, that was me..."
"So it's your son who is sick?"
"He was just diagnosed..."
"I just want to tell you how much respect I have for you and how much I hope you guys are successful in finding a cure. I don't know what I'd do if I was in your shoes..."
For some reason, that little spark of kindness moved me as much as anything else that evening. Maybe it was because it was entirely unexpected.
We have had a few such moments of kindness - all very brief and all very wonderful. We have a heroes page on our website (www.hopeforgus.com). Those are people like Steve and Marcey or Hot Lava - they are heroes because they went far out of their way to help us raise money to help our son and thousands like him who have DMD. But these little flashes of kindness are just that...glimmers of light that briefly brighten our lives.
Soon after our first press release, a letter arrived in the mail. It was written by a woman who had two brothers who died from DMD, "I just read the article about your beautiful son, Gus," she wrote, "I am unsure what makes me write other than to encourage you in your endeavor...My brothers were a gift to this world..."
A little later, we received another letter from the mother of a former student of mine, "I wish you and Tonya well," she wrote, "I wish for Gus good health and a bright future...please know that your efforts will be appreciated by countless others..."
Then there are the donations...everything from $25 to $250. Some are from people we know, and some are from people we don't know at all. All are aimed at supporting Gus as we try to push forward for a cure.
As Tonya and I continue to try to accept the fact that we have a child who has been diagnosed with a terminal illness, the biggest challenge is not despairing at what the future might bring. Gus is an ebullient, beautiful child today. Those flashes of kindness that we've been blessed with since his diagnosis are small reminders that each day we are panning the river. If we look hard enough, we'll usually find gold.