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"Her Strength Made Me Strong:" A Story of a Sibling with Down Syndrome

I was 8-years old when my youngest sister was born with Down Syndrome. I recall when my parents brought her home. She was so tiny she could literally fit inside a shoebox. My dad relayed the message from the doctor that we shouldn’t get too attached to her because she probably would not live very long. She made it to age 1, age 2 and the year she turned age 3, she gave our family the best gift ever that Christmas when she took her first steps! By that time we had all fallen completely head over heels in love with her and forgotten all about what the doctor said.


At the age of 5, my sister had a heart attack and a stroke in the same day. We had to teach her how to walk all over again. That gave us time to carry her around for a little while longer. We had been carrying her most of her life; she was very small for her age but still bigger than a baby and often friends would ask why we carried her. For my siblings and me, it was simple; she couldn’t walk and she was our sister. We loved her dearly and spoiled her rotten.


Virginia and her sister, Towanda.

I don’t recall how old she was when she started school. My mom was very protective of her and kept her close. It was an expectation in our home to take care of each other. I was the closest in age to her and my younger brother so I assumed responsibility when we left home. I spent many school days defending my sister from the bullies that went into her unsupervised classroom to poke fun at her. There was others who would point and laugh. On the school bus it seemed I was always fighting others for making fun of her.


When I went away to college, I would think about her a lot and have sad moments thinking about the opportunities she would never get to experience. Once when I was crying about it, a good friend explained to me that my sister didn’t realize that she was missing college because her world was all she had ever known. Until that moment, I never thought about it that way. I was thinking about everything I could do that she couldn’t, instead of understanding that she would not miss what she never had.


By that time, I had rightly earned my position as the “favorite” sister. She wasn’t ashamed to let everyone know it. I was proud that out of the other five siblings, she chose me! I held that position until a couple of years ago when she developed Alzheimer’s. Now, most of the time she doesn’t recognize me. I sometimes wonder why life has been so unkind to her. Why Down Syndrome and now Alzheimer’s. She is aging prematurely and the severe physical side effects from the stroke and heart attack have taken a toll on her body over the years and most days she is in severe pain. But I am reminded that she has had an incredible life in her world and how blessed my family is to have her.


My sister is one of the strongest people I know. Her strength made me strong and gave me a sense of purpose and compassion that I don’t think I would have had otherwise. In an unabashedly manner, she has loved me absolutely and made me feel special to have her as my sister.




Virginia and Towanda



About the Author:

Virginia Jordan-Benson works at State Farm and is currently a member of the Marcfirst Board of Directors.

Disclaimer: The views expressed are Virginia's and do not necessarily represent the official views of Marcfirst.

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