My Biggest Fear

By September 8, 2015Imagining Inclusion

This week, we are proud to be able to share with you a touching story from Hillary Savoie, mother of Esme and author of The Cute Syndrome. In this post, she writes about a conversation with a stranger that left a lasting impact.

The receptionist on the telephone is helpful as I try desperately to align my schedule with their availability. Scheduling appointments is never easy for me. Esmé’s therapies, her ever-changing daytime caregiver schedule, and my own obligations leave these tiny little cracks where I just might be able to squeeze in something to take care of myself.

“Ok, yes, I can do Wednesday at 1pm. I’ll have care for my daughter,” I say

“Just for some background, how long have you had the pain in your hip and lower back?”

“Um, well. About four years. Since a bit after my daughter was born. But it has gotten much worse lately because she is getting bigger.”

“Oh, she wants you to carry her a lot?”

“Well, my daughter is medically fragile and doesn’t walk. I have to lift her and hold her for long periods of time.” I say.

“Your daughter is disabled? I’m sorry. I’m pregnant right now, and that is my biggest fear…that the baby would be like that,” She replies.

I’m not very quick with appropriate responses in real life to the awkward things people say to me about Ez, so I just mumbled something like, “Oh. Hmm.” And then worked to push the conversation back toward finalizing my appointment.

I didn’t speak the words that were running through my head over and over: Well, maybe you aren’t ready to be a parent, then, if that is your biggest fear. 

After I hung up I kept thinking about how very odd it is that someone like Esmé–someone so perfect and kind and funny and loving–could be anyone’s fear. I wanted to call the woman back and tell her that my daughter is just a child, who, like every other child in the world, asks only for acceptance, love, careful attention–albeit in an intense and likely life-long way. That she is a beautiful and unexpected gift. And that this is what we sign up for when we become parents…not perfection, but acceptance and love without conditions, all while steering our children toward the best version of themselves.

But this woman’s fear of disability, of difference, isn’t something she is alone in. I keep thinking about how very much our culture values intelligence, strength, and speed of attaining milestones in our children–as predictors of a sort of this idea of “potential”–potential future, potential career, potential impact. These characteristics are not inherently bad or wrong to wish for our children. But they are limited, and limiting when looked at in isolation. What about compassion, kindness, silliness, creativity, happiness? What about different forms of intelligence? Or the strength found in determination? Or the inchstone in place of the milestone?

So I made a list of some of the things Esmé is that, as her mother, I see as her biggest triumphs. She does each of these things in her our unique way.

1. Esmé is inventive. 
2. Esmé is independent.
3. Esmé is determined.
4. Esmé is brave.
5. Esmé is loving.
6. Esmé is funny.
7. Esmé is able to enjoy being teased.
8. Esmé is creative.
9. Esmé is kind.
10. Esmé is happy.

And she should be no one’s biggest fear.

— Written by Hillary Savoie, author of The Cute Syndrome. The original post can be found here.

hillaryandesme

Photo credit: Tracey Buyce Photography, courtesy of The Cute Syndrome Foundation.

Hillary Savoie, PhD is a writer, disability rights advocate, and the founder of the Cute Syndrome Foundation. Hillary’s micro-memoirs, Around And Into The Unknown and Whoosh, about her medically-fragile daughter, Esmé, were released in 2015 by Ponies + Horses Books. Hillary’s writing has also appeared on a number of websites, including the New York Times parenting blogMotherlodeThe MightyComplex Child magazine and the Boston Children’s Hospital’s blogs Thriving and Vector. Hillary earned a doctorate in Communication and Rhetoric at Rensselaer Polytechnic Institute in 2013.

Kids Included Together (KIT) is a non-profit located in San Diego, CA and Washington, DC. We help make the world a more inclusive place by providing live and online training to people who work with kids. We teach strategies, accommodations and best practices to include kids with and without disabilities in before & after school programs. Inclusive environments create stronger communities. Learn more about our work at www.KITonline.org.

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