Editor’s note: This is a guest post by Ellie Stumbo, my daughter, for a summer series highlighting writers who focus on disability. This essay was published in the anthology, “Anything But Ordinary.”
I was playing at church after a service when mom said, “Ellie, could you play with your sister? She really wants you to watch her sing on stage.” I groaned. To be honest, even though my sister, Nichole, is cute when she sings, it can also be kind of boring to watch her perform, especially because it’s hard to understand what she sings.
My family and I don’t understand her words sometimes because she has Down syndrome. She can’t talk as well as we do. When she puts too many words together, some of her words or sounds seem to get lost. I felt bad thinking that it would be boring, because I knew it would be fun if I was the one singing on the stage with her watching me.
So I trudged up to the Sanctuary where my sister was singing, “Let It Go.” She stopped mid-song and shouted, “Ellie, sit down!” She pointed to the chairs in the front row. I sat down with a sigh, I was frustrated that I had to watch her sing but it was hard to stay frustrated as I watched my sister’s proud, delighted face. My sister loves to know people are watching her and that they feel happy and proud about the things she does.
Don’t get me wrong, I was still a bit bored, thinking I would have to sit there until it was time to go (which would probably be a while because my mom likes to talk… a lot). But then my sister ended her song and full of anticipation she said, “Ellie’s turn!” I willingly got up on the stage to sing a song from my favorite singer, Sabrina Carpenter. We took turns and ended up having lots of fun. We then spent the rest of the day playing together.
Since that day, every Sunday after the Church service, we wait till everyone leaves the Sanctuary and then we perform on the platform. I guess that’s one of the perks of being the pastor’s daughters.
Nichole is usually a joy, but there are frustrating times when I have to stop a second and remember, “She has Down syndrome, things might not always be as easy for her as they are for me.” Sometimes it’s hard to be her sister because she often goes into my room and plays with my toys. Or she steals as many toys as she can carry in her arms and hides them for herself. But I think that’s just part of having a sister.
My sister may be demanding and loud sometimes, but she’s also very sweet and loving. She gives the best hugs and kisses. My sister is a joy to our lives, not a disappointment. She changed us for the better.
I’m thankful for my sister. She loves to include me even though I might not always want to include her. I think this shows just how much she loves me. She has the cutest little face and laugh, and she always helps me feel better when I am feeling sad.
If Nichole was not my sister, I would probably stare at her and wish she was. I would be very jealous. And if I never knew her, I wouldn’t be as happy as I am now. Don’t judge someone with a disability (or anyone) from the outside. Because if you do, you’ll never get to know how amazing they really are.
I am so proud of my sister, and I love her so much for all that she has done to change my life. Some people think disability is bad, that Down syndrome is bad. But it doesn’t matter if my sister has Down syndrome or not. I love my sister for who she is on the inside. I wish everyone could see her the way I do.