When my daughter was born with Down syndrome, I determined she would be a “superstar.” I was going to do whatever I needed to do so she would rise above all expectations. She was going to challenge every stereotype out there about individuals with Down syndrome.
Yes, my child was going to be the kid with Down syndrome who was as “typical” as typical can be.
Twelve years in, and I realize how naive I was.
The experience of disability is vast and wide.
Twelve years in, and I am keenly aware that my wish for her to be a “superstar” was rooted in my ignorance and negative disability attitudes. Back then, I thought disability was bad, so the closer you were to “typical,” the better.
As if my child’s abilities reflected her worth.
Those “dreams” I held were a reflection of where I was in my journey of understanding disability. I had so much to learn.
My child is not the “poster” child for kids with Down syndrome. Not if the purpose is to show how much individuals with Down syndrome can accomplish when the criteria is to be as close to “typical” or “average” as possible.
I believe the drive to be a “superstar” is because we want our kids to be accepted in an ableist society. Yet these very feelings, I’m afraid, are ableist on their own. I understand where they come from, because we live in a world that values talent, performance, and above all, intellect. Anything that deviates from the “norm” is often considered “less.” Our kids are not “less.” Not in any way.
Yet even till this day, if I am honest, it can be hard to see other children with Down syndrome who are the same age as my child be more “successful” in certain areas. I wonder then, “Have I done everything I can do to help my kid?” “Have I missed something?” “Why is my kid not able to do that?” It is a momentary pang that gives me pause. Then I remind myself it doesn’t matter. It has never mattered.
The measuring stick is not other kids with Down syndrome, just like the measuring stick for me is not the other amazing humans that have accomplished so much more in their lifetime compared to me. I am not a “superstar,” nor am I extraordinary. And it’s okay. This “comparison” game is not healthy nor beneficial for anyone.
All life has value. Ability and accomplishment have nothing to do with worth.
Ultimately, my daughter’s life is rich and full. Her life is just as valuable and glorious as anyone else’s.
My child has her own strengths. She has gifts and talents to offer the world. If the world doesn’t want her contributions, it is not on her, it is a result of the ignorance that permeates our society. A society that fails to see that everyone can contribute, and that diversity enriches the very core of who we are as people.
I don’t want my child to be a “superstar.” I especially don’t want her to ever feel like she can never measure up. Because she is more. She is exquisite. She is love. Her life beats to the rhythm of her own song.
She doesn’t need to be more “typical” in order to be “better off.”
She is precisely perfect to me because of exactly who she is.
Her life is valuable because she is human — because she exists.
Her life is full of possibility and light. I get to help her figure out what supports she needs so she can live her best life, not in the eyes of others, but her best life.
And nothing, absolutely nothing can measure the love and joy she brings to my life.
Nothing can adequately describe the pride I feel over her hard-earned accomplishments.
I thank God He chose us to be together.
She is my poster child. She is my superstar.
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Image credit: Nathan Anderson on Unsplash