My brother has Down syndrome and I always knew I would protect him – but I never expected him to stand up for me, too

People always ask me what it was like before my brother was born. Unable to reply, I tell them that my brother and I are only separated by eighteen months, and, as such, I do not have a memory that does not include him. They ask because they are unable to fathom a life with a sibling with Down syndrome.

Rob is a twenty-one-year-old college student with a massive group of friends. His appearance and his speech are what give him away. His ears are slightly too small, and his eyes squint. His too-fat tongue makes it hard for him to speak, and only those that are closest to Rob are able to have a full conversation with him.

I often think about what my parents must have thought when the doctor told them he had Down syndrome. Unlike today, my parents did not know that their son had an extra chromosome until after he was born. I am sure they were scared, finding themselves free-falling down a dark rabbit hole. They could have put him up for adoption, but they didn’t.

He was their child.

By my second birthday, I started to take on a role of the “well-behaved sister,” having already learned the definitions of self-reliance and independence. I never got into trouble. When we took Christmas card photos, my parents told me to “hold my smile” and to “stay still” because Rob was always an unwilling participant. No matter how sore my cheeks were, I never let up, my face unwavering.

Rob has always come first, and I have always understood why.

Every year, there is a large conference for families with children with Down syndrome. The first time my parents made me go to the conference, I was thirteen. My parents signed me up for a “siblings” group. When I walked into the room, I quickly learned that point of the group was for siblings to learn how to treat their brother or sister with Down syndrome.

I was confused. Was I not supposed to treat Rob like an individual? As far as I was concerned, he was a normal guy who just happened to have Down syndrome. My parents needed help. They were thrust into a situation that they did not choose. They did not understand. I was living a life that I knew. It was all I knew.

Rob is my brother, and there is no changing that. I often think that they try to make him appear as “normal as possible.” He is always dressed in preppy, southern style. My mother would buy him clothes at stores at which she forbade me shop. While my entire family volunteers at the Special Olympics, Rob has never participated.

I often joke that my brother is “much cooler than me.” Quite truthfully, he is. He was friends with literally everyone in our K-12 school. He currently goes to Vanderbilt and manages their football team and their women’s basketball team. He wins awards left and right for citizenship. He is a fairly successful painter in the Nashville-area. He knows all the dialogue and dance moves for Zac Efron’s Troy Bolton in all three High School Musicals. He gives the best hugs. I wish I was half the person that he is.

When I was in eighth grade, my parents found my Myspace. It was the one time I got in trouble, and I learned my lesson as soon as my father started to yell at me. Upon hearing his voice, Rob rushed into the room. He stood between my father and me, saying, “Dad. Stop. Toots sorry.” Toots – pronounced “tutz” – is what my family calls me and what Rob exclusively calls me. He draped his arm around me and continued to admonish my father for his rant. He stood up for me to our father. He did not do it because he thought I should be off the hook. He did it because he saw me in distress. I am his sister.

Until this moment, I did not know that we had an unspoken rule to protect each other. I knew that I would always protect him, but I did not know that he saw me as someone he would always protect. A shift occurred, and the final wall was torn down. Even I had belittled his intelligence by not thinking he would stand up for me. I will never make that mistake again.

Rob still gets on my nerves. He still calls me just to tell me that I “smell like poop.” But, he also wrote on his college dream board that he wants to move to Los Angeles and live with me.

A life without him is unimaginable, and, to be honest, I would never change it.