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Life with Emily

Childhood moves by quickly, in a whirl of colors and fond half-forgotten memories. Anyone who has brothers or sisters will admit that their siblings take up a majority of those childhood memories.

I am the middle child. I have an older sister, Emily, and a younger sister, Caroline. I come from a reasonably large family with lots of aunts, uncles, cousins and those second cousins once removed. This is the point where you are probably wondering "OK, great. This kid has a big family. Her point is --?"

My point is to not ramble on about myself but instead give a little background information before talking about Emily. Emily is 18, brown-haired, hazel-eyed and she has Down syndrome.

I remember one time looking at Emily carefully. Her oval eyes reminded me of those belonging to my new cousin, who had been adopted from China. I asked my mom, "Was Emily adopted from China?" My mom pulled me on her lap and told me, "No, she has Down syndrome, something that makes you look and think a little bit differently." I didn't ask any more questions, being only 4 at the time.

Now I know that Down syndrome is a genetic condition, which means that a baby that is supposed to be born with 46 chromosomes is born with 47. It causes different degrees of development both physically and mentally.

Emily shows a tendency toward Obsessive Compulsive Disorder at times. She has to sit at a specific spot at the table, carry around a special stack of books and dangle a necklace. Emily has been dangling necklaces since I can remember. When we were little, she was an expert at pulling out Dad's shoelaces so she could dangle them.

Emily has been going to school since she was 6 weeks old. She wasn't learning things like math and science but instead having someone helping her do simple things: trying to get her eyes to follow objects and playing little games. She went to occupational therapy (OT), which is a program that helps people with their motor skills. Emily also went to speech therapy. She didn't really start speaking until she was about 4, before that using only simple sign language for words such as "want" and "hungry."

She also has to go to summer school and will continue her schooling until she is 21. Emily will be graduating high school in 2013, the same year that I will graduate. She still goes to OT and speech therapy, but also has little jobs that will help prepare her for life. She works at Kohl's and goes to Ralph Wilson Stadium before Bills games to help prepare the suites, getting pizza afterward.

Over the years Emily has gone to many different schools. It can be hard for her to transfer to all these different schools, so she uses the school mascots to get excited about the move. She has been everything from a Springville Griffin to an East Aurora Blue Devil to a Holland Dutchman.

It can sometimes be difficult living with Emily. I have to be patient and help her out a lot. Sometimes it can be frustrating, for example when Emily sings too loudly when I'm attempting to do my homework, but one hug from her instantly makes everything better. I couldn't ask for a sweeter older sister.

When we were younger, I shared a room with Emily, and inevitably every Saturday morning at 2 a.m. she would wake up, go downstairs and begin watching Disney movies, waking me up in the process. We would move the couch cushions and snuggle together watching different movies together until 8 a.m., if we didn't fall back asleep first.

Emily's love of Disney has not abated. She will only watch Disney movies (with the occasional DreamWorks film thrown in) and has a great love for musicals such as "Beauty and the Beast" and "The Little Mermaid."

So, after years of her begging, we finally went to Disney World last August. She didn't want to go on the more extreme rides, but she enjoyed rides like Buzz Lightyear's Space Ranger Spin and the classic Dumbo the Flying Elephant ride. So we were all surprised when she wanted to go on Kali River Rapids, a white-water rafting ride. We stood in line for almost two hours waiting patiently to go on the ride, and by the time we got to the front of the line, it was hot and crowded, and tempers were running high. Our mood was not helped when Emily realized that going rafting meant getting wet. I told her I would make sure she didn't get wet if we went on the ride, knowing there was no real way to do that, but at that point I had just wanted to cool down. We finally got on the ride, me sitting next to Emily and we began going, spinning around and around until we got to the first big drop. Emily didn't get wet at all. I blocked her, getting soaked from head to toe. After that Emily just laughed and laughed at me until the ride ended, and we went to see a play in an air-conditioned auditorium, which was not comfortable for me. Emily just laughed the whole time. She loved Disney World. We had just arrived home and Emily asked me when we were going back. I consider the Disney excursion a success.

Sometimes, I have to do different things than my friends and other teenagers so I can help Emily. I will skip after-school activities to go home and watch Emily when my parents can't get out of work. Some days, Emily refuses to leave the house when I have a school commitment I need to go to with the rest of my family. It is never easy, and I always feel like the catalyst of any yelling that finally gets her into the car so we can get there on time. When Emily didn't want to go on a certain ride I wanted to go on when we went to Disney, and one of my parents stayed behind with her, I felt bad, like it was me making my mom or dad miss a ride.

On Wednesday nights during the summer, I help Emily with baseball in the Kyle Reid Memorial Challenger League. It is an amazing program, run by some dedicated people. Anyone with a disability and a liking for baseball can sign up. Some of the kids get really into it, and some, like Emily, just like hitting a few balls. It is adapted so that anyone at any level can play, and Emily always looks forward to the games.

On Thursdays when NeXt comes out, Emily always gets excited, whether I have an article published or not. She always asks me every week if I am in the newspaper, and when I am she points at my article and says, "Lissa, you are in the newspaper!" She comes home from school with an article that her teacher has clipped out of the school newspaper for her and is so proud.

Over the years, Emily has met many people who are kind to her, including all of my friends and some of her own from her previous schools and who go to school with her now. She talks to her best friend from prekindergarten and sometimes gets letters from an elementary school friend.

Most people over the years have been understanding and compassionate, knowing that Emily can't do the same things as everyone else. There have been a few people who don't understand. One time in church school, we arrived late and Emily sat down with two girls, who gave one look at her and moved to another table. She didn't understand, and it has always made me feel bad for her how they treated her.

Everyone else loves Emily. I have friends that come over and will graciously accept a hug from Emily. I have even been told that Emily gives the best hugs in the world, and you just have to ask for a hug and she will give one to you. Emily loves all my friends, which I am thankful for because she keeps track of all of their birthdays.

That is the most amazing thing about Emily; she loves everyone. It doesn't matter how little she was or how long it's been since she's last seen you, she always remembers everyone she meets.

Down syndrome affects almost 1 in every 800 children. It can cause heart defects and troubles with hearing and sight. Living with Emily is an adventure, and I wouldn't trade her for the world. I believe everyone should be aware of Down syndrome and other disabilities and show compassion because they are sweet, loving people, who deserve love in return.


Alissa Roy is a sophomore at Springville Griffith Institute.

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