LOVING MY BROTHER WITH A DISABILITY

BY IAN CHEN

Having a brother with disabilities isn't easy for my family and for me. I feel a jumble of emotions. There is a lot of drama, pain, and sadness. But there is also hope that he will get better. I am 12 years old and my brother is 14. I hope this essay will enhance your knowledge and when you see a disabled person, I want you to know how hard it is on their families.

My brother was diagnosed with Lennox-Gastaut Syndrome (LGS) when he was two-and-a-half years old. It is a rare epilepsy syndrome and there is no cure for it. According to the LGS Foundation, about 48,000 children and adults in America, and about one million worldwide have been diagnosed with this form of epilepsy. It is one of the worst seizure disorders to have. About 70% of patients have cognitive impairments and about 50% have bad behavioral issues like my brother. In his life, he will need a caregiver and supervision at all times.

I am filled with sadness when I think of the things that he does that creates drama. For starters, he throws huge tantrums frequently. He bangs his head forcefully to the walls and slaps everyone that he can reach. Going to stores, we always try to avoid the wine aisle because he tries to break every wine bottle even though he is in a wheelchair. Sometimes, my brother gets his hands on toys, batteries, and DVDs, and he holds them so tight so as not to hand them over. We would then have to buy them because my mom does not want to create a scene.

Eating at restaurants is not easy either. Everything within his reach he would grab and throw it wildly on the floor. One time, we were at a restaurant for Christmas dinner with my cousins, and my mom explicitly told the waiter not to serve next to my brother. Nevertheless, he did and my brother's head bumped the plate of spaghetti and meatballs. He hurt his head and the sauce was splattered all over the floor and the table.

Everyone at the restaurant was shocked. The incident ruined the good vibes and the mood.

When it comes to traveling, nothing is easy, from departure to arrival. My brother falls onto the ground and starts screaming at the top of his lungs at the gift shop. He would do that if we didn't buy something for him or if we have to leave the gift shop. When flying, to leave the gift shop. When flying, my brother throws up because of motion sickness and the stress of a new environment. When we land, it's a struggle to get to his wheelchair because we have to carry him all the way to the front of the plane. At a hotel my brother would have special meals that would have to be blended because he cannot chew.

When I was nine, I often got very frustrated when he slapped me, and I used to yell at him for doing that. But now I have learned that he cannot control what he does. He is nonverbal and therefore he cannot express his feelings. Even if my brother seems very lovable on the outside, I can assure you that he has the eye of a tiger. It's very painful to see my whole family worried about his seizures and get injured from helping him with daily activities. My family feels upset because they cannot control his seizures. When I see him having a seizure, it leaves a permanent scar on my heart. When he is having a seizure, it looks like he is being possessed. His eyes roll up into his upper sockets and his whole body starts cramping up like he is being electrocuted. His lips start to turn blue the longer he is in a seizure. He starts screaming in pain. His face and body turn as pale as a ghost. His face starts tightening and it looks pretty unnatural. After that, he is limp and has recurring spasms for about 10 minutes. While he is having a seizure, the oxygen tank comes out and his nose is instantly plugged with a nasal oxygen straw.

It is also causing me agony to see my family physically drained. My dad endures back pain and meanwhile, my mother frequently has arm injuries. These injuries are mostly caused by lifting him out of the bathtub. My grandma always gets whacked by my brother. And I get slapped on the face. Now that he is well over one hundred pounds, one person cannot lift him up anymore. I try to help but I am in no shape to lift him. Therefore, I want to get stronger in order to help them out. Sometimes I just feel like, "Why does it have to be our family to have a brother who is disabled?" But to that, I have learned the answer, "Why not?" The physical struggles make my family stronger, and that is what we need to take care of him.

TOUGHER TOGETHER: "The physical struggles make my family stronger, and that is what we need to take care of my brother."

Even though there is a lot of uncertainty about my brother getting better, I still try to believe he will get better. My brother has been on lots of medical diets and trials. For instance, my brother did the Ketogenetic diet which is a low-carb and high-fat diet. His body burns fat instead of carbs which helps some people not have as many seizures. My brother has also been on two medical trials. The first is the Epidiolex, which is based on cannabidiol, or more commonly known as marijuana. The second is a medication called Fenfluramine, which was used as an appetite suppressor, but in 1997 it was banned because of cardiotoxicity. Therefore, my brother always has to go to the hospital to monitor his heart. He also has done surgery to implant a Vagus Nerve Stimulation (VNS), which basically is a device that sends mild electrical pulses into the brain via the neck. I am hopeful that one day there will be a new medication that can cure him.

Having a disabled brother is not easy TOUGHER TOGETHER: "The physical struggles make my family stronger, and that is what we need to take care of my brother." for any family, especially dealing with emotions of everyday drama. There is a lot of uncertainty about whether my brother will get better. But I know one thing for sure, we cannot live without him because we love him too much. So, the next time you see a disabled person, make sure to be kind and thoughtful to them and their families. •

ABOUT THE AUTHOR:

Ian Chen: "I am currently a seventh grader attending Cathedral School for Boys. During my spare time, I love to socialize and play video games with my friends. A sport that I like to play is basketball. I am addicted to the longest running prime time sitcom, The Simpsons."