Tag Archives: MDA

For Wesley

“There’s one more kid that will never go to school, never get to fall in love, never get to be cool.” ~ Neil Young

This isn’t going to be well written. I’m filled with grief and I’m mourning a life that was way too short.

I do work and donate time and money to the MDA. I’m just telling you, I’m not bragging. I donate when i don’t think I can afford to. I give time and performance when i could honestly use the money. It’s the one kid’s show that I do, ever. Once a year: the MDA summer camp. Believe me when i tell you that it is hard work, and an absolute joy, a true honor.

I love those kids. I love the counselors. I love the organization and the back breaking work they do for these awesome young humans.

and this love, as most things do, comes with a price. Time and money, sure. Sacrifice, yes … but the kind of sacrifice that is a pleasure to make. The steepest price is death. These children have different forms of Muscular Dystrophy. They waste away. They fight, and they struggle and they live the best possible life they can. And the fight gets lost, and the cost is life.

I lost one today. I got the news via Facebook and a friend. This boy had spark, he was energetic and joyful and funny. He was Into all the activities and quick witted and … I cried in the pain of losing him.

“His pain is over. His suffering is at an end.”

Yeah. Okay. Soon another will follow him. and another, and another. Because there’s not a cure right now. In this enlightened, advanced day and age, why are we still fighting so bitterly over imaginary lines, ideology, dogma, when we could direct that energy into love and healing? I know … I sound naive and childish. Perhaps.

Right now all I see is a boy that should be feeling those awkward growing pains, instead of suffering from literally withering away. I boy that should be alive and vital, and instead … is dead.

I lost a bit of my heart and softness today, and it feels like I’ve already scraped myself thin. I wept hard and quietly and briefly (my beloved roomie said that I had BETTER cry more than that when she goes. Made me laugh.) And now I feel a little more hollow. I’ve had several surprise breakdowns.

I’m going to continue to fight for them, the remaining. I’m going to donate and advocate for love and healing and cures .. and kids in camps.

Goodnight, Wesley. This one is for you, champ.

Support the MDA: http://www2.mda.org/goto/memorymakers

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Summer Camp

I do one 'kids show' a year, and I wish I could do many more, as long as they were as gratifying, as heartwarming, as the Charlotte MDA Summer Camp. Every summer for the past 11 years, I've been invited to entertain the campers and the counselors one evening, and every time I leave, I'm struck by how lucky I am to have been there.

The children and youth that attend have various forms of muscular dystrophy, but their enthusiasm is unmatched in any audience I've had the privilege to work for. Yes, it's your typical summer camp. There are multiple activities and campfires and sing alongs and home sickness and stomach bugs and everything that makes camp a silver memory that many of us treasure for our lifetime. It's so much more than that, though. As you might imagine, working with the individual challenges of each camper is a daunting endeavor, yet it's done with humor, energy, and style. So much grace …

And there's love. Man, the love in that place is so thick you could spread it on toast. The staff and the counselors bring their best for the campers and everyone looks out for everyone else. Maybe I'm gushing a little, but I'm sincere.

The past three years I arrived wrapped up in my own troubles, and they vanish within the first few minutes. I leave invigorated, happy, and hopeful. And moved. Lifted so high, emotionally.

I'm not …. writing about this to brag, or promote my image. I want to impress on you the value of giving of your ability. Taking your talent, your time, your vitality and using it to enrich the lives of those who need it and see so little in their world. It could be anything, any cause, listen to your heart. Believe this: it's been worth any 'sacrifice' I've had to make in order to be there.

The love you need is where you plant it.

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