By Kate VanDerzee and Jennifer Giese
Every year, there are 5,400 babies born with Down syndrome. My brother, Jack, was one of those 5,400.
On the day of Jack’s birth, my parents were scared. They had no idea he was different until five minutes after he was born, and my mom says that everything up until that point had been completely normal. There had been no signs detected that would indicate any sort of problem with Jack, so the news the doctor delivered was a shock, to say the least. The doctor had to explain to my parents that there had been complications, and that Jack had been born with a common chromosomal disorder called Trisomy 21. Trisomy 21 means that Jack has an extra 21st chromosome. My mom cried when she heard the news because she thought it was her fault. She thought that she hadn’t taken good enough care of herself before Jack came and that’s why he was born with Down syndrome. The doctors had to tell her that everything was going to be alright and that it wasn’t her fault, though her risk had been higher because she was over 35. The doctors knew how to take care of Jack, so they took him away to the CT Children’s Medical Center for a few extra days before he could come home. They made sure that Jack was healthy and normal for someone with his condition, and they told my parents about Jack’s disorder and how it would affect him for the rest of his life. It was an awful lot to take in at once, but my dad in particular was determined to know everything he could.
He read almost every book about Down syndrome within a week, and he spent hours talking to the doctors and trying to learn as much as he could. While he was learning, he explained what he knew to me. I was only four at the time, so he made sure everything was easy for me to understand. He told me about Down syndrome, the people that are affected by it, and how their lives are only a little different from everyone else’s. He told me that people with Down syndrome needed some extra help sometimes, and it would be my job to make sure Jack got what he needed once we started school. I learned about the health problems Jack might have, and that he would need regular check-ups to make sure everything was okay with his heart and thyroid. My dad explained that Jack would look and think a little differently from everyone else, how he would have stunted growth, shortened neck, flat nose, slanted mouth, small ears, and slanted eyes, as well as delayed cognitive ability. Even with all of this, my dad said that Jack would have a good life. He will live just as long as I will, and he will live well.
That was thirteen years ago. Now the two of us are in high school together. I’m a senior, and he’s a freshman. Most people would think that having someone like Jack in their family would be a burden, but these people forget that the joy Jack gives us overwhelms any trouble he might bring. He always makes us laugh and there is never a dull moment. Over the years we have become closer than most brothers ever do. We depend on each other for everything, and we hang out all the time. Jack likes to tell people that we’re a package deal, and it’s the truth. Jack’s Down syndrome is an obstacle, but the two of us face it together. Over the years there have been some good times and some bad times, but no matter what, I’m there for him and he’s there for me. I need him in my life. He is my best friend.
For more information on this disorder visit this website: http://kidshealth.org/parent/medical/genetic/down_syndrome.html