The door to Ben's room was always open. It was open to anyone willing to watch Cake Boss. Or anyone willing to enthusiastically yell ‘Bum Bum Bum’ while listening to the song Sweet Caroline. His door was always open, except for when it wasn’t. There was only one situation that it would be shut, a seizure. I can vividly remember the moments I was relaxing on his bed watching the Red Sox game, and within a moment, I was shuttled out of the room with the door closed in my face. I picture myself huddled on the floor directly outside of his room with my ear pressed against the wall, trying to listen for a sign of life. Waiting for someone to tell me he is breathing. But usually, instead, I would hear the sound of sirens followed by the first responders walking in and then moments later, leaving with my brother. I understand that my parents did this to protect me, but it did not always feel like that. I kept thinking “I’m supposed to protect him, if you just let me in, he will be okay” or “if today is his last, will he know I love him.” These thoughts keeping me up on the dark nights he was in the hospital.
One time, during a severe episode, my mom invited one of our friends over to watch my sister and me as my parents headed to the hospital. She arrived at the door with her son so that we could have some company. On this day, we went upstairs to my parent’s room to distract from the emergency, yet it did the opposite. Their bedroom included windows that took up most of the wall and directly overlooked the driveway. The moment I reached the window, I tore open the curtain to satisfy my curiosity. As I looked out the window sobbing at the reality of the ambulances, my friend was mesmerized by the flashing lights. I noticed that while he was sitting in a state of amazement, I sat in a state of anxiety.
This story alone shows the perseverance, resilience, strength, and maturity of super siblings or the siblings of kids with life-threatening illnesses. I was just a kid, I shouldn't have to worry about the death of my brother, yet that is the only thing that crossed my mind. Unlike my friend, I didn't care about the sirens or the flashing lights. Super siblings are the strongest kind of people. And yes, I was still young, but I understood more than others thought. People have referred to me as an "old soul", and I think that this comes simply from the fact that super siblings are expected to grow up and face challenges that many adults haven't even experienced.
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