Burnt Chocolate Stories

Matt, Josh and Ben, 1991 Dear Ben, Today is a very sad day for me, for you are my brother, and now I must learn to live without your wonderful smile. I didn't quite know what to tell your friends and family about you so I decided to write you a letter instead. In your final days, while the spoken word escaped you, you were still writing things down, with your toes and your beautiful eyes, guiding the curser of your life. They tell me you worked until the very end but I will let others tell of your successes and your incredible work ethic, for these are things of less import to me today. You were such a wonderful brother to me Ben, and truly, you were my best friend in this world you have left me to dwell alone, to navigate without you, my information post, my source of information, my personal news bulletin of my life. You knew me better than anyone. Even when I was screwing up, really screwing up, really bad, you didn't care, and you listened to me, and more important...

Many of you first met Ben after his illness struck. Some of you knew him before. I had the great pleasure of birthing this magnificent man into the world. And he gave me the rare gift of being able to hold his hand and kiss his cheek as he took his last breath. From the time Ben was three, we teased that if we took him deep into the forest and cleared his pockets of breadcrumbs and stones, he’d still find his way home. The middle child of five is no easy place to land in a family, but Ben served as our family heart. His feisty spirit challenged each of us and bound us together from the very beginning. Several months after his diagnosis he said, ‘Mom, I’m going to make a movie about ALS.” Without a clear focus or story line, he began to film and, more importantly, make a life for himself to fill whatever days remained with purpose and love. This past week, we arrived in Cleveland with the great hope of extending Ben’s life in the ways he most wanted to live. He filmed those three final ...