ars literarium
Untitled Each step sent an echo down the dimly lit, locker-lined hall that was in stark contrast to the glass buildings we passed before entering. The old hall would probably be more fit for a school like Hogwarts rather than a modern hospital littered with Au Bon Pains, 8-year-old me thought, having just seen the most recent Harry Potter. I looked left and right, taking everything in before our guide, Dr. Z, a woman maybe 50 years old wearing a long, white coat, promptly stopped. She held open a door, corralling my mom, who was pushing my wheelchair-bound brother, Greg, and I into the auditorium. “This is where we will be presenting Greg’s case!” exclaimed Dr. Z, “The first-year students love it when we are able to have guests.” I knew Greg was special, but I hadn’t really thought much of it. Beyond having to take handicap entrances and sometimes getting to cut the line for rides at amusement parks, to me, he was simply my older brother. Like any brother, I loved him. But I would also frequently get annoyed when he’d poke me on long drives or shout during my favorite TV show. Eventually, the students piled in. I promptly slouched down in my seat in the front row, trying my best to blend in with the wooden chair and not be noticed. My mom and Greg sat front and center with Dr. Z. Once the crowd settled, Dr. Z flashed through a bunch of slides listing physical traits, each of which described Greg. Low hanging ears; a large gap between his eyes; unable to walk... According to her, all of these characteristics suggested a genetic mutation, but the location of said mutation eluded her and her colleagues for over two years. It wasn’t until after his second birthday - Greg’s initial life expectancy provided to my parents (which he has since long exceeded as we hope to celebrate his 30th birthday this coming November) - that he was diagnosed with Wolf–Hirschhorn Syndrome, or the abbreviated name my mom told me later that afternoon, 4p-. At the conclusion of the talk, my mom played a song she had written for Greg on guitar: Heaven in Your Eyes. After a sufficient standing ovation, most students subsequently lined the side of the auditorium. The line started moving, with each student eventually passing in front of us to share a brief word.Most were simple: ‘Thank you for taking the time to speak with us’; some were compliments regarding my mom’s song or questions about Greg, and fewer were open-ended conversation starters. I remember one student asking me directly, “So how has it been growing up with Greg?” Although a fairly straightforward question, I returned him a blank stare. It wasn’t something I’d given much thought, and no one had asked before. Having Greg as a brother definitely presented challenges that wouldn’t be considered normal - some minor, like always having to leave ten minutes early for soccer practice to make sure there was time to unload Greg from the car and set up his wheelchair, and some major, like being ordered out of the house and sent to a neighbor’s for the night while my mom patiently waited for EMTs to arrive as Greg suffered through an intense seizure on the floor - but does normal even exist?
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