My younger brother, Simon, will always be my best friend. He was born with a mitochondrial disease and was never able to speak or walk, yet he exuded kindness through his unique and loving personality. Simon's gratitude radiated during each of his days, no matter how tough. He often needed nebulizer treatments and suctioning to aid his breathing, but he flashed us huge grins despite the discomfort of the mask and tube, as if we were all in on the same joke. He truly loved and appreciated the things that many of us take for granted, like taking long naps, getting off the bus after a day spent at his special education school, going to music class, and spending a sunny afternoon sitting outside. He especially loved spending his birthday with family, friends, and colorful balloons tied to his wheelchair. I will always remember the huge smile he had whenever he caught a glimpse of the Perry the Platypus balloon I gave him for his twelfth birthday, which somehow remained inflated for months.
Several months after his twelfth birthday, Simon’s respiratory problems became severe. We learned that he likely had less than six months to live. This news was difficult for me to handle as a sixteen-year-old, but my parents and friends offered immense support. My best friend often escorted me out of the classroom when I needed to cry, and my mom frequently picked me up early from school and took me to our favorite coffee shop. In November, Simon began a hospice program and continued to enjoy each day through massage therapy, music, his teachers and caregivers, and our family.
On March 26th, less than three weeks after Simon’s thirteenth birthday, I received the call from my parents that I had been dreading. They told me that they raced home after an urgent call from his caregiver. He was having more trouble breathing than they had ever seen, and they weren't sure how much time we had left with him. Since he had survived many rough days in the past, I clung to the hope that when I got home he would still be smiling at his orange thirteenth birthday balloons.
My mom stopped me at the door on my way inside the house. She told me Simon had passed away a few minutes prior. My vision blurred and I dropped my backpack. I ran into my parents’ room where Simon lay, still believing that he would be okay. Once I physically reached his body and could no longer hope for another day with him, it felt like my whole life shattered. I hugged him, crying, and wondered how we would continue on without our favorite ray of sunshine.
While losing Simon was unbelievably traumatic and devastating, it motivated me to spend time with other children and adults with special needs. Two summers after Simon’s passing, I worked as an assistant teacher at his special education school and as a respite caregiver for people of all ages with disabilities. I am grateful to have had the ongoing opportunity to work with individuals with exceptional needs and to teach and learn from them. My experiences with Simon and other members of the special needs community with whom I connected have inspired me to work toward a career in medicine. I plan to dedicate my life to offering care and love to children with disabilities.
Isabel is a junior at Vanderbilt University majoring in Medicine, Health, and Society. She grew up in Michigan but currently lives in Boise, Idaho with her Great Dane, Arthur.