When I was a kid, I wanted an older sibling to look up to, someone I could follow and copy what they were saying and doing, enough to annoy them. It looked like fun to have that kind of relationship and these were things you could only do with an older sibling.
Unfortunately, I don’t have that. I have an older brother who is 19 years old, but he is like the baby of the family. He has a severe case of cerebral palsy so he can’t walk or talk. However, even though he has this disability, I have come to learn that he has so much more to offer than I had thought. Even though he can’t speak, I love him. He has taught me as much as my mom and dad have.
I don’t remember the early days of my childhood with my brother. He was always just there, a presence in my life. The earliest thing I remember is that he always got more attention than me, even when I was young. My mom says that whenever I saw my mom and dad playing with my brother I would start to cry so that one of my parents would have to play with me too. I was supposed to get attention as the baby of the family, but I didn’t get it so I was confused.
Because I didn’t get that much attention as a child, in Korean I’d ask my parents, “Mom, do you like me or not?” in a half playful, half serious way. I’d ask her that every single day. I knew the answer would be yes but I needed to hear it just to be sure.
When I was around 5, we would go to Torrance to see if acupuncture would help my brother improve his coordination so he could walk by himself. It was an hour-long drive. I hated car rides because I would get car sick. I’d always complain, “Can we just not go this week?” My parents would just say to sleep in the car.
I thought he got treated better than me
When we arrived, my dad had to carry my brother from the car to the wheelchair. I’d say, “Daddy, can I be carried too?” My parents would laugh and say, “We’re going to leave you here then.” Normally I’d walk out of the car but once I stayed and they left me there. Now that I look back, I realize that I was being selfish but I was jealous.
When I was in elementary school, he and I shared a room. He would make noises when I was trying to sleep. I’d think, “There he goes again.” I’d say, “Please be quiet.” Sometimes I’d go to my parents because he was so loud. They knew better how to get him to go to sleep. Sometimes I slept in my parents’ room if he was too loud. It really annoyed me because I’d be cranky in the morning if I didn’t get enough sleep. I could not understand why he could not just sleep when it was time to sleep.
Around age 6, I realized that my brother was different. At church or at home when my friends would come over, I always got questions like “Why is he like that?” I wouldn’t say anything because I didn’t know how to respond. I had the same question.
My mother used to be sick all the time with migraines and stomach problems. When I was around 10 I asked her why she was always sick. She told me that when I was 4, she was lifting my brother and her back twisted, and that she hurt it so severely that it affected her whole body afterward. I had known she got hurt but I hadn’t known that he was the reason. I started to resent that my brother had this disability. If he hadn’t turned out like this, then my mom would be healthy and my family would be happier. I wouldn’t have felt neglected and we could have gone on family vacations and out to eat and to the movies, like my friends’ families.
As I got older, I learned that he had cerebral palsy. We would go to the hospital and I would hear the doctor use the term “cerebral palsy” and I knew they were talking about my brother. I had always known that something was wrong with him but now I knew it was a disability, one that prevented him from doing all the things a healthy person can do. He was born with it and it wouldn’t go away so my family would just have to live with it. I wouldn’t get frustrated with him as much because he couldn’t help that he needed more attention and couldn’t listen to what I was saying.
We started spending more time together
In middle school, my mom started asking for my help around the house. She did this because she knew I could handle simple chores and take care of my brother. In the beginning, I only did what she told me to do. Sometimes I fed him if my mom was too tired. Sometimes I had to watch him when my mom was out. He would be sitting on his mattress. Because he couldn’t talk, it was silent. I hated silence so we watched TV. Out of the corner of my eye I would watch him just to make sure he hadn’t fallen over. If he did, I would pick him back up.
When I was in eighth grade, he started getting really sick. At first my mom thought it was a cold. But it didn’t go away and after one or two months, we noticed that he was getting skinnier and weaker. He had been able to sit up by himself and walk with my mom standing behind him, but after a while he couldn’t do either of those things. My parents went to the hospital to find out what was wrong. We found out he had Guillain-Barre syndrome, which had attacked his nervous system and weakened his muscles. He had to be hospitalized for a month.
Since my dad had to work and my mom had to be at the hospital with him, I was alone for a month. My friends would take me home from school. I’d make a snack and then go into my brother’s room. It felt so empty because there was always someone in there when he was home. His room was next to mine so I could always hear him and my parents talking to him and playing with him. But it felt dead after that so I felt like I needed to fill that space. I’d turn on music or a Korean drama just to listen to something because the house felt so empty.
I would stay in my brother’s room until 9 and then I’d go into my room. My mom would come home at 10 or 11.
At first I thought that I didn’t really care that he was gone but now that I look back on it, I guess I did care and I did miss him. I’d always ask when he was coming home.
His hospitalization was even more shocking to me because he needed to have surgery, but he couldn’t get it. The doctors told my parents that because my brother had cerebral palsy, if they put him under anesthesia for surgery, there was a chance that he might not survive. When I heard what the doctors said, I felt a hole at the bottom of my stomach.
When he came back, I helped out my mom more willingly. His diagnosis made me realize that he might not always be alive so I should appreciate the time that I have with him.
I started to watch what he was doing. I realized that he didn’t have much to do by himself in that room of his. He couldn’t walk or talk or even feed himself. I started thinking that he would get lonely just sitting there by himself in his room all the time. Sure there was my mom, but when just your mother is talking to you for the first 15 years of your life, you get pretty lonely.
So I tried to talk to him. I didn’t know what to say. I would ask him about his day and he would blankly stare at me. My face would turn red because I remembered he couldn’t reply. I would try to tell him about my day but I would usually just say that my day was good, not giving him any details because I didn’t know how to talk to him yet.
As the days went by, there were more things that I could tell him. I would talk to him about my report cards, my fears, fights with friends, and even what went on at school, which I could never remember when my mom asked, but somehow I always remembered when I talked to him. Even though he could not respond, he always seemed to be listening. He would look at me when I talked, and sometimes he would clap or make noises as if he was replying to what I had said. He seemed like he genuinely cared and for the first time, I didn’t resent my brother having a disability. It was because I had to take care of him that I had someone to “talk” to.
As I got to spend more time with my brother, I realized he was so much more than just a person with a disability. He had a personality inside of him too and was someone I could talk to.
In June of this year, I was at the top floor of my school and the only thing I could see was the school. I thought, “My world is so tiny compared to what is actually out there. I can’t just focus on myself, there are so many more important things than my own life.”
A few days after, I tried to talk about it with my friends but they said, “Yeah the world is big, what do you want me to do about it?”
He’s a good listener
A few weeks later I had to take care of my brother and I was still thinking about it. I said to him, “I’ve been so selfish my entire life and I’ve just realized it.” I told him about how every time I complain about the little things in my life, it’s a hint of how immature I have been when really, I have been so blessed compared to the rest of the world. I talked to him about all of the other children my age who don’t get the opportunities that I get, like an education, and if I ask my parents for food or clothes or electronics, I usually get what I want. I talked about all the children who don’t know when their next meal will be. I talked of kids in Africa and other parts of the world who can’t go to school at all. I talked and I talked for two hours and at the end I realized that I wanted to give those children the same opportunities I had. I wanted to help them like so many other people had helped me throughout my life. I started to care about others more through that experience. After I was done, I looked at his reaction and he was giving me a really exasperated look like, “Are you just realizing that now?”
No one else would have helped me realize this because no one else but him would have let me develop my thoughts as I spoke. Even though he gave me no actual response, he nodded so I knew he was listening. I could infer that he was nudging me in the right direction.
Now when I talk to him, it seems like he understands what I’m saying. Sometimes if I’m arguing with my mom while I’m helping her wash his face or take off his shoes, I’ll say something back to her and he’ll clap or laugh. I’ll say, “Look, he’s agreeing with me.”
I can’t say that my bond with my brother is perfect. I still wish for a regular older sibling relationship sometimes. It is probably a wish that is never going to go away for me. However, I’ve realized that in life, you can’t have everything you’d like. Maybe for me having a normal sibling relationship just wasn’t meant to be. Maybe I was supposed to have this bond so I could learn to be less shallow. Maybe I wasn’t. Whatever the reason, even though I wish I had an older sibling I had always dreamed of, I am happy with my brother just the way he is.