I was ten years old and had just finished a game of Wii bowling with my older brother Noah and my grandparents, who were staying with us at the time. The truth is that Noah and I had only been playing video games to distract ourselves from what was happening with our younger brother, Simon. My parents were with Simon in the hospital due to his severe respiratory problems. We knew it was a very serious and life threatening condition, but somehow in the back of my mind I had always kept a shred of optimism. It was about nine o’clock at night, almost time for Noah and I to get ready for bed. My grandma walked over to me with tears in her eyes and handed me the phone, mouthing to me that it was my mom. I began walking down as while listening to my mom update me on Simon, but I only made it to about the third stair before I couldn’t walk any further. I sank down onto the stair and started crying. I was incapable of moving; I was too nauseated and lightheaded from the news I had just received. My mom told me that Simon had been moved to the Intensive Care Unit of the hospital, and that it didn’t look like he was going to make it. The doctors had told my parents that this would be his last night, and that we should prepare for him to pass away. Hearing this, the shred of positivity that I desperately clung to was abruptly ripped away from me. After hanging up with my parents, I somehow managed to drag myself down the hall and into my dark, lonely room. I collapsed onto the edge of my bed, so hysterical that I could barely breathe. I’ve never cried as hard as I did that night; my entire body was shaking. I kept thinking that this was the end, and I wasn’t going to have a little brother anymore. My favorite person in the world, an angelic, innocent child was going to leave us. I cried myself to sleep.
My brother Simon was born when I was four years old and living in Knoxville, Tennessee. I was much too young to know what was going on with his health at the time, but I’ll always remember meeting him for the first time at the hospital. The drive was terribly long and boring, and I still remember looking out of the backseat window at the boring gray roads, wondering just how long it would be until I could see my mom and baby brother. I held him for the first time that day; he just seemed like an adorable, chubby, normal little baby. As it turns out, however, Simon wasn’t just a normal baby. He had to stay in the Intensive Care Unit for ten days when he was born due to numerous medical problems, including breathing problems, rib retractions, and extremely low blood glucose and body temperature. The doctors kept telling my parents that he must have a bad infection, but would be completely fine and perfectly healthy. Every doctor that he was taken to insisted that there was nothing wrong with him until he got a muscle biopsy and was diagnosed at seventeen months with Oxidative Phosphorylation, a rare mitochondrial disease. We were told that kids with this disease typically don’t even live to their first birthday, so it’s out of the ordinary that he’s lived as long as he has.
Simon has never been able to walk, talk, or sit up, and isn’t very physically responsive at all. He’s fed through a tube in his stomach, has hundreds of seizures a day, and has been in a wheelchair since he was about three years old. I remember when my mom first told me that he was going to need a wheelchair. I cried because that’s when it first truly sunk in that Simon’s never going to be a normal, healthy kid like the doctors said he would. He’s never going to hang out with friends, play on a playground, read a book, get married, or experience even a fraction of the things that other kids do. It hurt to come to this realization as a seven year old, and hasn’t gotten easier since then. I’m bothered most, however, by my understanding that I can’t help him. I’m never going to cure my brother.
Of course I love him more than anything, and I tell him that as much as I can. I live every day in deep fear that it’s going to be the last day I have with him. I don’t think anyone outside of my family can truly understand the feelings of constant stress and ache that I live with, never knowing how many days we have left with Simon. It could be a day, a month, or twenty years. Emily Dickinson said that “one dignity delays for all”, and I know that it’s true (Dickinson). She’s right; everyone faces death eventually, but it’s enormously burdensome to know that one day I’m going to wake up without my baby brother. I also wonder what will happen after he passes away. I’m Christian, and I believe that he’ll go to heaven. However, sometimes I struggle with the belief that if someone can’t make a commitment to Christianity, they don’t go to heaven. Simon obviously can’t commit himself to the church, but I try to keep in mind that God is merciful and loving, and will bring Simon to him without hesitation.
Through all of my struggles with Simon and his disease, I’ve found that I’m passionate about helping people in need, especially when their health is compromised. There is no feeling as gratifying as the deep satisfaction that I feel when I can do something to make another person’s life better. Perhaps I feel this way because it helps to fill the void of being unable to cure Simon; maybe it’s God offering me another way to serve people. I hope to go into the health/science field, so that I can assist people and do my best to relieve them of their medical troubles. Simon has given me abundant empathy; therefore I can understand the deep emotional distress that families of someone with an illness possess. I’m very interested in biology as well, which is another reason I’d love to work with health and medicine eventually. I haven’t decided exactly which career I’d like to pursue because there are so many varieties of doctors, and many of them are intriguing to me. Regardless of the specific career that I choose, my goal is to be as caring and compassionate to everyone as I can be. Simon has had excellent doctors, and he has also dealt with those who don’t seem to be concerned in the least with helping him. I aspire to be like the former; involved, attentive, and genuinely devoted to helping those in need. Outside of work, I want to travel to other countries to volunteer. I would love to help take care of suffering families in foreign countries. Although my own family faces immense struggles, I still take my own blessings for granted and I believe that it would be a truly humbling experience. I have so much to offer to the world, and hope to contribute all that I can, so I do not discover when I come to die “that I had not lived” (Thoreau).
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