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This is my Sister...

Update: Jenny passed away on January 6th, 2022. Even in death her light shines through. Until we meet again, my sweet little, big sister.

This is my sister. Her name is Jenny. She is 46 years old. She has Down's syndrome and I love her. When I was born she couldn't pronounce my name so she called me "Oakry." Most of the time she calls me "Bud." But when when we see each other, she says, "Hey, Moron!" to which I reply, "Hey, Creep!" It's just our thing.

My sister lights up any room she enters. She always offers up a big smile and hug, whether she knows you or not. And with that squeeze and grin she wins your heart. Jen has always been the popular girl at school, the leader of her gang of friends, never afraid to be in the spotlight, ready to show you her latest dance moves.

Jen loves music. Some of her favorite bands she has been obsessed with through the years are, New Kids on the Block, Backstreet Boys, & Rascal Flatts to name just a few. She has been to many of their concerts, met several of them in person and they instantly love her, too. Again, with that smile and hug she wins the day.

Jenny is athlete. She competed in the Special Olympics in just about every swimming event available for over 15 years and has more medals that i can count. She loves to win medals. She got pretty used to that. It really didn't matter if it was gold, silver or bronze, so long as it was a medal. I remember, once, she came in fourth place. She was standing next to the platform where the first, second and third place winners stood. They handed her a fourth place ribbon. She looked down at this piece of fabric that was NOT a medal. Well, let's just say she wasn't a very good sport that day. She threw down the ribbon and stormed off to the locker room. She has her moments. We all do, right?

Jenny has Down's syndrome. It's a genetic disorder caused by having an extra chromosome. This means she's not "NORMAL" by the world's standards. But I never knew that she isn't normal. She is normal to me. We grew up together and I had no idea that she was "different" than anyone else. She is just my sister who I played with, ate with, wrestled with. Whatever I did, we did together. We had tons of fun together and, sometimes, she got on my nerves. I remember eating breakfast and building a wall of cereal boxes between us because she was irritating me. Brothers and sisters, am I right?

As I got older, I began to realize that she was "different." Some people (especially children) would stare at her. It would make me SO ANGRY. "Different" or not, she was still my sister. So,I became very protective of her. "Take a picture. it will last longer. IT'S NOT NICE TO STARE AT PEOPLE," I would say. Then it would get awkward and they would walk away.

The older I got, the more we began to do our own things. She went to school for kids with special needs and I went to public school. She had swimming, horseback riding, bowling, and much more. I had football, band, choir and youth group. When I played football in high school, the cheerleaders would let her come down and cheer with them and she LOVED it. Thanks Julie Wright.

We recently found out that Jen has late stage Alzheimer's. It's a degenerative disease that causes the brain and body to lose functionality of memory, speech, walking, and more. It's been tough. Especially for my parents who are in the thick of it with her. They take such outstanding care of her. She needs help walking, bathing eating, etc., and they do it. Nonstop. Everyday. Without Complaint. It's really hard to think about that someday this disease will take her from us. I know it's coming. But it's one day at a time. And I know that God has her in his hands. So today, I'm holding onto those smiles and hugs like they are gold medals. ■


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