The Kindness of Strangers...

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.

Hope for Gus Up and Running!

This post was originally posted on 3/15/10 on Wordpress: Welcome to our new blog here on Blogspot!

Hello,

Welcome to the Hope for Gus Foundation’s blog. Our son, Gus has Duchenne Muscular Dystrophy – we have been blogging on Caring Bridge, but wanted to broaden our audience, so these first couple of posts may have a ‘middle of the stream’ feel…

Here we go:

Things have been busy…Gus was fitted for his night splints, which he wears to bed every night like a trooper. I think he complained ONCE and now it’s just routine. They keep his heel cord stretched, which helps a lot with mobility. He has also started aquatic therapy and he loves it. Water is great for him because he feels weightless – which probably feels wonderful after straining himself to get around all day.

A few weeks ago we were visiting Steve’s mom up in Vermont. Gus woke up one morning and said to Steve, “Daddy, I had a dream last night. I dreamed that my legs didn’t work.” After asking him to repeat himself a few times, Steve brought him to me and had him tell me about his dream. We were stunned and wondering if it was just a fluke, or if he really has some idea about the progression of his disease. As fas as he we know, he only realizes that he wears braces and takes medicine to “keep his muscles strong.” He didn’t seem upset by the dream…just very matter of fact about it, but it was just very strange.

Anyway, we are making a lot of progress with the foundation, including choosing a name. A very special thanks goes out to fellow Francestownian Janet Hazel for suggesting “Hope for Gus.” We love it because we truly believe that if we don’t have hope, we have nothing. So, the Hope for Gus Foundation is soon to be up and running. We have a board of directors, are filing the paperwork, and have our website up. Check it out at www.hopeforgus.com You can find out more about DMD, learn how to organize a fundraiser, or donate online. We’re very excited about this – it’s a wonderful way to feel like we’re actually doing something to help Gus and other boys like him. 100% of the proceeds will go to research to help treat and/or cure DMD.