“I am glad that Ellie is your only girl.”
I hear that or a variation of that a lot. Honestly, I have thought it myself on occasion.
The idea is that if Ellie had a sister, she would grow up trying to be like her. The fear behind it is that if her sister were typical, Ellie would never be able to measure up.
I have thought about Ellie and her imaginary sister sharing hair tips or makeup when they are teenagers. I can see them playing with dolls or cooking in the kitchen together. In my mind I hear a lot of laughter and witness a lot of pranks pulled on the boys. I’ve also felt the dread when thinking about what it would be like when the pretend sister left her behind.
I believe (and research supports) that naming our fears gives us power. Saying what we are afraid of out loud can actually make the fear feel smaller. It changes the focus from hiding what we are trying to keep from others to shining a light on it so that we can look for solutions or can learn more. The more we know, the easier it is to move away from being scared.
The act of just writing this about Ellie and her make-believe sister – who in my mind grows up to look a lot like the Disney version of Cinderella – sort of ends the story here.
If I push myself forward and try to think about ways that the princess sister will leave Ellie behind, I really can’t think of that many. And the ones that I can think of are ones that could happen with or without Down syndrome as the antagonist in this fairy tale. Further, I can’t see that a sister would create any more competition than she has now with her two brothers.
My rational brain knows that there will be things Ellie can’t do, just like there will be things that her brothers can’t do. There will be things that all of them will need to work hard to accomplish, and I know that each of their dreams will be different.
There is always someone to be jealous of or look up to and a little competition is healthy. Plus, it is ok to fail. Failures are just lessons.
Sure, things may be harder or come slower to Ellie than they do for her brothers, cousins and friends. But that is who she is. Nothing will ever change it. Just as the children will have to overcome any insecurity over the freckles on their noses, Ellie’s work will be to do the same with Down syndrome.
Already, she knows she is different. She knows that she and I are the only girls in the house and likes to get away from the boys from time to time. She recognizes that she is the only one in our house with two belly buttons and remembers that her food used to go to her tummy through a tube. She points out the braces on her feet that none of the rest of have. If she has this much awareness at home, I am sure she must see the differences at school.
My husband Ben and I haven’t hidden it from her and won’t start. We talk about Down syndrome and Ellie’s challenges openly. It is not something we pretend doesn’t exist, just like we wouldn’t pretend that those freckles were invisible.
Every morning before we leave for school, Ben picks Ellie up to give her a hug. “Be brave and have fun” is what he whispers in her ear.