Updates from Charley's Mom

For my birthday today, I had the greatest gift. I spent the afternoon skiing with Charley. It’s hard to say this without hearing schmaltzy violins in the background, but today I truly understood what people mean when they say life is a gift. The sky was a clear cornflower blue, the snow was soft, and hip-hop was pumping thanks to a Mountain Dew promo party being held at the mountain.

Charley was in heaven, making his own “bowls� by skiing all the way to the side of the trail where it slopes upward, then down to the other side and back up again as fast as he could. When he turned to me with a huge smile and asked, “Mommy, did you like the way I did that?� my heart leaped into my throat.

It takes all the willpower in the world to freeze time in that moment, and resist the urge to look ahead. Every time I saw him doing those quick knee beds and twisting his torso side to side to try to look like a racer, I forced myself to focus on the beauty of the day and push thoughts of the future out of my mind.

Self-imposing a small dose of denial isn’t the only hard part about taking Charley to do the activities that so many people do without a second thought. At first I wanted to take the boys snowshoeing at a local nature preserve that was having a special outing for kids. But as soon as the thought entered my mind, I erased it, knowing full well that Charley would tire half way through and then what would I do with one child who needed to be carried back to the car, and the other begging to go on?

So I resorted to Plan B, which was to stick Charley’s older brother Sammy in ski school and take Charley out on the slopes with me, where we could take it easy, I could keep a close eye on him, and he wouldn’t be fed snacks that violate his low-sodium/low-fat/low sugar diet. In an effort to preserve his energy for the skiing, I carried all of his equipment and mine, and dragged him along with my pole as we made the long schlep from the base lodge to the chairlift. I nervously had my eye on him the whole time, worried that an out of control skier might crash into him, break his leg, and render him immobile for a long time, perhaps forever.

Despite the emotional and physical toll of the day, it was truly beautiful. Charley was at his happiest. Tonight when I put him in bed, I took off my glasses to get a better kiss. Knowing that I am legally blind without corrective lenses, he asked “Mommy, can you see me?� When I replied that I can see him when I put my face close to his, he asked, “Why, did you take contact lessons?� Another perfect gift…one of those adorable kid comments that will keep us laughing for years as we retell it over and over to family and friends.

Then the phone rang, only to bring my final present of the day. It was Logan Smalley, director of Darius Goes West to report that his film took the two top awards at the Oxford Film Fest in Mississippi: Best Documentary and Audience Choice. As the documentary travels around the country gathering awards and an audience following, we know the crew will have a major impact on our fight for a cure.

On days like today, when I am schlepping skis and boots and poles and Charley up a slippery snowy hill to get to the chairlift, I think it’s only natural to ask myself, “Is this worth it?� Darius and his friends remind me that yes, no matter how hard it is to get up and go, it is always worth it.