Growing up with a Sister with a Developmental Delay.

**I wanted to share I story I wrote that helps to describe why I chose my platform.

Janice Kristina was born on June 9, 1985. My mother was a mere 25 years old giving birth to her second child. She had no idea that this 6 pound infant had an abnormality that had been stitched deep into her DNA at the moment of conception. My mother did everything right, she took care of herself. She was young. And yet her infant was diagnosed with Down Syndrome shortly after birth. I was 11 months and 14 days old when Janice was born, so I do not remember those early days, and I cannot comment on how my parents coped with her diagnosis. I can tell you how I coped and what my earliest memories of her were.

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I remember a smiley face with big blue eyes and blond hair. I remember her infectious giggle. I remember a 3 year old wobbly Janice learning to walk and all of us clapping with joy. I remember learning I could get over on my little sister. If I stood on the tippy top of my toes I could stretch my chubby little arm in between the bars on her crib and grab her bottle and enjoy the milk that was inside. I was eventually found out and reprimanded. I remember when Janice got her first big girl bed and I just HAD to sleep in it with her, you know, so she wouldn’t get scared.

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As we aged, our developmental gap widened. It was about 1st grade when I became embarrassed of Janice. I was a painfully shy child and wanted nothing more than to be accepted, and kids can be cruel. I don’t like talking about this, but I want to be real. I purposely avoided Janice if we came into contact at school. I looked away. I tried to steer conversation away from “the special class.” If I had been a more confident child, maybe I would have ran to her, hugged her, told everyone that she was my sister, and that she looks a bit different, but she’s not much different than you and me. But I didn’t do that. This general way of thinking went on until middle school when we actually had the same gym period. The counselor offered to move me to a different class, but I refused. Maybe I subconsciously wanted to watch over her, but I kept her relation to me a secret. Somehow, a group of mean girls found out and straight up asked me if she was my sister. I should have said, yes she is! So what? I should have told them I was proud of her, but I didn’t. I lied. I told them she wasn’t my sister and to this day it pains me that I couldn’t be stronger and tell the truth.

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When I got to high school my confidence came. I had a close group of friends who knew Janice and loved her. I even volunteered to help when Janice’s class traveled to the special olympics for the day. I still got frustrated with her, just like any other sibling, but I wasn’t ashamed anymore. This was my normal and it was ok. I had came to terms with Janice and I loved her. She bugged me sometimes, but I loved her.

When I got married in 2007, Janice was my bell ringer. The look of pride on her face as she walked down that aisle will stay with me always. I am her idol. Janice thinks the sun rises and sets with me, and I could never convince her that I am not worthy of such praise, so I will try to make her proud instead. Janice is stubborn, she is sweet, she is incredibly witty and she loves to indulge in culinary delights. She loves playing with transformers and she loves Disney Princesses. Janice can read and write and loves to draw. Janice does not see color, nor does she judge. She is everything I wish I was. She lives life to the fullest and loves without abandon.

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I was recently crowned Mrs. Tennessee International and I needed to choose a platform that would be close to my heart. Janice is 28 now. I didn’t even have to think about it. I knew I wanted to advocate for adults with intellectual disabilities.  I am now busy advocating and doing what I can to inform others that adults with disabilities deserve an education, and to be accepted and included in their communities.  Janice has taught me compassion. Janice has taught me patience. Janice has taught me not to fear differences. Janice has taught me that the most important things in life don’t cost money or make us beautiful. Janice has taught me more than I could have ever learned in school. The most important thing is how you treat others, and how you live your life to the fullest despite limitations. Growing up with Janice has made me who I am today. When I see someone struggling I don’t look away. I don’t keep going. I offer help. I am not afraid of differences, I embrace them.

Growing up with Janice was not always easy for me, but those shortcomings were my own, not hers, and just like many young people, I had to find myself to see the light. I am utterly grateful I grew up with Janice as my sister and I wouldn’t change her for the world. I will continue to use my crown to make her proud, and I will continue to advocate and try to make a difference.

4 thoughts on “Growing up with a Sister with a Developmental Delay.

  1. Your story actually brought tears to my eyes and I know that your mother must be extremely proud of both of you!!!
    Stefan

  2. WOW! THATS ALL I CAN SAY. MY EYES TEARFUL AND MY HEART ACHES BECAUSE I WISH I COULD HAVE BEEN A BETTER PERSON! 56 YRS OLD AND I REALIZE IT’S NEVER TO LATE TO CHANGE. GOD BLESS YOU AND THAT BEAUTIFUL TOUCHING STORY.

  3. thank you for sharing your story and inspiring others that these people are as still people. My son doesn’t have downs, he has ADHD, which can be challenging in its own way. It doesn’t make him different, it makes him unique. This world needs more people like you! I applause you!

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