Living Life to Its Fullest By Stella Scheier (Age 16)

Having a sibling with a disability not only changes your life but also changes you as a person. I know that I would not be the person I am today without my brother, Oliver. My brother Oliver has a rare form of Muscular Dystrophy called Rigid Spine Muscular Dystrophy. RSMD has only 70 known cases around the world. The doctors are currently researching and learning about the disease through my brother. It affects his muscle strength, distorts his body, decreases his lung capacity and causes severe Scoliosis.

Oliver has exemplified perseverance, determination, and courage from the second he was born. As his older sibling, it was my job to be an example for him but also be there for him no matter what he had to endure.

My life has most likely been different than anyone else my age. Most 16-year-old girls do not know the feeling of having their younger brother endure an 8-hour surgery that was incredibly risky because of his decreased lung capacity. They don’t understand how it feels to see your brother struggle with things that most people take for granted like running or getting dressed. No one else understands the heartache I feel every time my brother trips and falls without knowing what caused him to do so. But these feelings not only changed me, they have made me stronger and more appreciative of things most others take for granted.

At the age of two, Oliver had a feeding tube in his nose because he needed extra nutrients in order for his body to develop. Changing his feeding tube is an unexplainable experience. My brother was put through excruciating pain. I was only four years old and had no choice but to sacrifice my feelings and only worry about how he was feeling. It became my job as his older sibling to figure out ways to distract Oliver during this process. For example, I would dance, sing, make jokes—I would try anything I could think of to take his mind off his pain. But on top of that, it was also my job to stay strong: stay strong while my brother was in pain, stay strong when my parents were gone with my brother at doctors’ appointments, and stay strong no matter what happened.

It is not always easy to stay strong and positive. Oliver definitely takes priority and consumes a lot of my parent’s time. At least one of my parents handles my brother’s doctors appointments or his needs, while I am left to manage on my own. Throughout my whole life, I have always struggled with this; I sometimes found myself to be jealous of all the attention my brother received and all the time my parents spent with him. In these moments, I found having a sibling with a disability to be a challenge; it is hard to constantly know that my brother’s needs are put before mine. At a young age, I was forced to figure out a coping mechanism to deal with the jealousy I felt towards my brother. As I grew up and matured, I realized that my brother does not want this attention, he does not want to have my parents constantly focused on him, he does not want them to always have to take him to doctors’ appointments, he does not want everything that comes with RSMD.

Everything that I have dealt with this so far in my life, all the pain I have been through, all the hardships my family has overcome, make me who I am. Having a sibling with a disability is something that I would not trade for the world. Oliver is not like any 14-year-old boy and the way he deals with everything in his life inspires me every day. Although some days have been harder than others, being the sibling of someone with a disability is the best thing that has happened to me. Oliver constantly makes me laugh, he cares more about family than anything else, and most importantly he lives every day to its fullest.

 

This “Siblings Flaunt” has been published in partnership with the fabulously flaunting organization, Siblings with a Mission

One Response to “Living Life to Its Fullest By Stella Scheier (Age 16)”

  1. Joni GreenfieldApril 1, 2019 at 9:24 pm #

    Stella, what a beautiful essay/article you wrote.
    You ARE beautiful on the inside and the outside. We can all learn so much from you. Thank you for being you.
    Much love,
    Cousin joni

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