I am a child of luck. My older brother Ben was diagnosed with a rare terminal genetic disorder before I was born. My mom had once dreamed of having a big family, but knowing what she did about her genes, she and my dad only took that chance once more. That was me.
As a kid, I lived in the shadow of my two fantastic older brothers, though Ben felt more like a little brother to me. By the time I was three, my development was already greater than Ben’s, separating birth order and mental abilities. I don’t remember the days when the three of us would take baths together, wrestle on our parents’ bed, or just watch PBS’s Arthur at home. Instead, I remember the day when I first became old enough to be alone with Ben, my steady grip on his hand readying me in case he stumbled. I remember getting in foam sword fights that were entirely unfair, quickly learning that Ben’s disability did not dampen his competitive nature. I remember watching first my parents, then my brother Noah, stand unafraid before crowds of people and tell our family’s story, our goal, Ben’s Dream—our research foundation. All the while taking mental notes so one day I would be ready to do the same.
Ben died nearly two years ago. He left me with an affinity for wacky people, ease on stage, countless friends, patience, an infinitely positive attitude, and the courage to be myself. From the beginning I had to be older than my years would suggest. I grew up fast, a kid who learned to face stares, breathing tubes, and even death early on. I explained, smiled, and studied the science behind the way my brother was, followed the fundraising efforts, and always kept myself ready.
In my high school senior English class I read Shakespeare’s Hamlet. “To be or not to be” is great, but for me the most resounding line of the four hundred year old play was “the readiness is all.” I realized that even though I cannot control what’s coming in my future, that I won’t always have the answers to life’s questions, or any idea of the path I should take, I can be ready. Any day could be the day we find a cure, could have been the day he died, or the day someone poses a question I can’t answer. I’ve learned to be ready. I am a child of luck. Lucky because I didn’t just take something away from my experiences with my brother; I became someone because of them. I’m the performing-arts-English-geek-horse-loving-wacky girl who is ready.
Jan. 1 always brings up difficult feelings for me. Even before Sanfilippo syndrome entered our lives, New Year’s was a holiday for reflection — which isn’t necessarily an easy thing to process. Each year, thoughts about what the coming year has in store flood my mind. Read More