I remember we were at the mall one day. I was just 9 years old. It was my mom, aunt, grandma, my two younger brothers, and I. We were walking out of New York & Company, and some lady approached us. She pointed to my 8-year-old brother Louis, looks at my mom and says, “what’s wrong with your son?” Everyone in my family got really upset, including my aunt who was ready to punch the lady in the face, and we had to leave the mall. I had no idea what was going on and I didn’t understand what could possibly be wrong with my little brother. A couple years later I learned that my little brother Louis has Emanuel Syndrome.
Growing up, I never thought my little brother was different. I would just think to myself that that’s Louis. That’s just how he looks and that’s just how he is. I mean, he was only a year younger than me, what was I suppose to think? After that day in the mall I knew something wasn’t right, that he’s not like others. I kept silent; I didn’t ask questions for a couple of years, I didn’t know how to ask.
When I was around 12-years-old, I started asking questions. What’s it called? What’s his syndrome? Where does it come from? How many kids have it? Why? I become so curious. My parents answered these questions with no second thought. Emanuel Syndrome is when the 11th and 22nd chromosome are switched. My brother can’t walk, talk, eat on his own, bathe himself, or do any of things that we do on the daily. I learned that there are only about 200 people in the world with this syndrome. This was a lot to take in as a 12-year-old girl.
I found that I started taking more responsibility. I would always help my mom with anything she needed to do. I would dress him, feed him, and bathe him, even though I was still just a kid myself. As I kept getting older, I realized that he was getting older too and still needed just as much help. I became more and more responsible and ready to do whatever I needed to take pressure off of my mom. I also started to notice in what ways this affected the rest of my family.
My grandma still takes it the hardest because she was the carrier of it and didn’t know, and she passed it onto my mom. My dad is different. He tries to act like its not there. It is almost as if he doesn’t want to accept it. I can see the stress that that puts onto my mom.
The life expectancy of my brother is still unknown. As long as he’s healthy, he can go on and on. I look at everything so much differently now. I appreciate the little things in life and it hurts me seeing that my brother wont get to experience his first kiss or prom or little things like that. I definitely see myself taking him in one day when I have my own house and family and when my parents can’t do it anymore.
Montclair State | New Jersey