I pull my two year old daughter from her car seat. She reaches out and hugs my neck for a second, then wiggles herself to her preferred position on my left hip. She fits comfortably there, almost like a part of me. We walk into the store, and people do double takes as we walk by.
This happens everywhere. While I’d love to think it was because of her cute little pig tails or her infectious smile- most of the time the double take is because Abby has Down syndrome. A look of recognition crosses their faces and most of the time, people gravitate to her. They want to tell her she’s beautiful and act like I’m some superhero because of the sidekick I wear on my hip.
There are times though, the awareness crosses over the strangers face, and it melts into pity. The Look of Pity is the worst look. I used to hide from it. I used to cry myself to sleep because of it. I did not want people to pity me. I did not want people to think that Abby was anything less than any of my other kids who had once occupied that same place on my hip. I tried through my blog, through Facebook, etc, to show the world that Abby was just as good as everyone else. I wanted people to use “person first” language because I thought it would change the way they looked at my daughter. I spun my wheels until I had no tread left.
I was burnt out. None of that helped me to change how I felt about the Look of Pity. Until one day, I confronted it. I got that look from a lady at the grocery store and said, “Say hi, Abby!” and Abby smiled and waved. The women’s face went from pity to delight. She talked to Abby for a second, and we both walked away different people than we had before Abby had changed us.
I want people to know the facts about Down syndrome. I want people to know that it’s not what they think it is. I want those whose immediate reaction to my daughter is pity to know that there is nothing to pity here. It’s hard, sure, but it’s beautiful. Down syndrome has added a richness and depth to my life I didn’t know was possible. I learn from Abby every single day.
And I hope others learn from her, too. I don’t raise my Down Syndrome Awareness banner as high as I have in past Octobers, because I feel like I can promote awareness every single day of the year. I can allow Abby to just be herself. That will do enough all on its own. Because with every person she comes in contact with, they are better for it.
I don’t need to talk about Down Syndrome Awareness as much anymore. I carry my Down Syndrome Awareness on my hip.
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i heart you so hard.
This was just beautiful, Lexi.
I'm pretty sure at least some of the head turning is because of all that cuteness. How could it not be?Love this post.
What a lovely accessory you wear!
Prety sure they are stopping and looking at her beauty..she is gorgeous and i could just eat her up!!!!
[...] There have been a few times where people haven’t been so kind. I’ve written about it before. Most of the time, people don’t mean harm. They come from a generation that thought differently about people with Down syndrome, or they have their own preconceived notions about the ‘burden’ my daughter is on society and me. Sometimes they pity me. [...]