I believe in many things. Many things that are not possible, that can not physically happen. I want to believe that my boyfriend will move closer, that I will strike luck and win the lottery, and most of all that my sister will suddenly overcome her disease and become a “normal” child.
You would think that at a prime age of thirteen anyone could tie their own shoes, run their own bath water, and start to excel in the eighth grade. My younger sister is different from most of the unruly, rambunctious, preteens. She has a disease called lissencephaly, which literally means smooth brain. It is a rare brain formation disorder characterized by the lack of normal convolutions in the brain. This disease forms while the fetus is being formed so it is something that happens before the child is even born.
I can not describe the pain this disease causes towards my sister, Andrea, and to her family and peers around her. I hate to be selfish but sometimes I wish things were better, I wish societies standards were not so shallow, and I hope that someday people will learn to accept ones who are different. Although this struggle has been tough it has taught me so much. I have learned that no matter what, your family will always stand by your side. My parents are so strong to go through what they have. The daily tasks at our home take more time and more stress. My parents and I take turns driving the many miles to Andrea’s private school but in doing so we know she is getting the best education she could receive. Its also hard to explain things to my sister. When she asks why she doesn’t fit in with other children her age, or even the already tough question, “Where do babies come from?” there is no easy way to phrase the answer so she will understand. The fact that she will never drive an automobile, or own her own property is kind of a downer but the joy that she brings me is irreplaceable.
Luckily medicine has already advanced enough to control the seizures that Ande has caused from lissencephaly. She takes medicine twice a day which prevents the “shakes”. This is also why I have faith that medicine will keep advancing until many diseases are cured, including the one my sister has. She has also become more dependent when it comes to taking her medicine which is so amazing. No matter what she is doing she has an internal alarm clock and will remember to ingest her 4 pills.
I believe that medicine will advance is the near future and my sister might be able to live the life every little girl wants. Even though living with my sister is tough I could never ask for a better one. She is the most genuine person I have ever met. She is the love of my life and I wouldn’t trade her for the world.
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