She May Not Be Brave, But She’s Obviously a Superhero

We are excited to share this post with you, written by Hillary Savoie – the mother of Super Esmé and SO much more!  

When I was newly pregnant, I had this overwhelming feeling that this was it—this was where the rubber met the road. It was time for me to fully become the kind of woman my daughter—I’d always known my first child would be a girl—could look up to.

Looking down at those positive pregnancy tests, which I took obsessively over the first few weeks, I imagined the things I would teach my daughter by my example. I realized quickly that there were things I’d need to learn to do better in time to teach her. I imagined how I would guide her, helping her grow into a confident, thoughtful, powerful girl and, eventually, woman.

But then my daughter arrived. Before I even saw her clearly, everything changed. She arrived, Esmé, tiny and fragile—struggling to breathe, to move…to survive.

Over those first hours, days, months, I watched her battle for the tiniest gains.

And soon it became clear to me who was going to learn from whom.

She was going to teach me.

It was clear who was tougher than whom.

It was her.

This little child—who could not hold her head or drink without choking or sputtering—was so much tougher than I was.

That was the undeniable truth.

Within weeks of her birth, my child had completely humbled me. She was my superhero, come to change everything I thought I knew about life, parenting, and love.

 

The Responsibility of Bravery

I shy away from my daughter being called brave. It makes me cringe—even as I say it to and of her, because I do. But, I hesitate as I say it, because, here’s the thing: I don’t know that she is brave. Bravery means someone is ready and willing to meet a challenge. It implies a choice.

Esmé doesn’t have a choice but to be tough. There is no alternative path for her.

The very act of Esmé’s daily life requires her to face challenges—painful, intrusive, terrifying, and apparently insurmountable challenges.

Life hasn’t given her a say in the matter.

Bravery is not the responsibility of children—it is the obligation of adults. It is the job of the adults in her life, the people who are lucky enough to exist in the meaningful circles she builds around her, to be the brave ones. Be ready and willing to fight beside her—to find ways to make doctor’s visits less painful, therapies more fun, and procedures less scary, even as we want to cry just from watching.

Facing down the insurmountable day-in and day-out isn’t easy—not everyone is brave enough to choose to be there with Esmé. And so we search for and accept only the doctors, the therapists, the family that is.

Loving a Superhero

While I am troubled by the idea of my daughter being called brave, I am not, as you might have guessed, similarly troubled by the idea that Esmé is a superhero.
In fact, I fully embrace it.

As I wrote in my first short book, Around and Into the Unknown, Esmé’s genetic differences often make me think of superheroes like the X-Men and Spiderman. That like these characters, my daughter has something that makes her different, at the level of her genes. This difference is catastrophic in many ways—but it is also part of what makes her Esmé. Which is pretty great, because Esmé is the most determined, kind, clever, and funny person I know. I cannot help but believe that the genetic differences that make her who she is are more than simply errors of genetic multiplication and division.

They mean something more. What this is, I cannot claim to understand—not fully.

Like Esmé, superheroes do not have a choice but to be different—their bodies require them to face down their differences. Like Esmé, their choices come in the form of how they perceive their differences, what they do with their differences, how they use them.

Every time I watch my daughter get up from falling again and again, trying to pull her uncooperative limbs into order, bruises raising on her slender legs, I see her make a choice between two paths: trying or not trying to do the impossible thing. Each is difficult in it’s own way. After two years of being able to pull to stand, but not yet having let go or taking an independent step. (After four years of finding and loosing words or and over, and after five and half years of struggling to safely swallow)…no one would be surprised if she stopped trying. But stopping trying is, its own kind of pain and frustration—it is accepting a lack of independence. It is saying, “I cannot win this battle,” which is a battle of a different sort.

I see these two paths being weighed behind my daughter’s eyes sometimes when she watches other children racing passed her. I see it when other children speak to me, and I, understanding their words, speak back
No matter her choice it is a battle.

Choosing Our Battles

This makes me think about the larger role of superheroes. We think it is all about the “bad guy,” but it isn’t. The role of superheroes is to make us see the world—and our own choices—differently. It should be to move the rest of us, those of us who have choices, toward greatness. Superheroes should inspire our bravery.

This is the deeper, knowable, importance that is hiding in the errors of division and multiplication in my daughter’s DNA. These are the truths that open up in front of us when we walk headlong into loving someone like Esmé: My daughter makes me brave. I am not a brave person; I can only be brave for her because it was demanded of me…because my daughter demanded it of me. This is the thing that people don’t understand when they hear about our day-to-day life, and say “she’s so lucky to have you.” I am brave, but I am only brave because my daughter demanded it of me. And so, I when I reply, “No, I am lucky to have her,” I don’t only mean that I am lucky she is here, because I love her, but because she has made me who I am.

And it isn’t just me. I in the five-and-a-half years since my daughter entered this world I have watched the ripple effect of her existence. She changes people. The people who really, truly, honestly love her, they are different for knowing her. They are better. I see it in them. They are the people who saw the love gauntlet she laid down for them, took a deep breath and said, “Ok, bring it on.”

This is the battle we are lead to when we love a superhero.

 

Hillary Savoie is a writer, advocate, and mixer of killer cocktails. She is also mother to Esmé, a beautiful little girl with multiple rare genetic conditions. Hillary has blogged about life with Esmé since 2012. Her writing has appeared on Motherlode—the NY Times parenting blog, The Mighty, Romper, and the Huffington Post Blog, among others. In 2015 she published two short memoirs, Around and Into The Unknown and Whoosh. Hillary is the Founder and Director of the Cute Syndrome Foundation, which is dedicated to raising research funds for and awareness of PCDH19 Epilepsy and SCN8A Epilepsy. Hillary holds a doctorate in Communication and Rhetoric from Rensselaer Polytechnic Institute, which was great preparation for parenting Esmé, who is an expert in nonverbal persuasion. In her free time she enjoys gardening, dancing to Beyoncé and the Muppets with Esmé, snuggling her geriatric cat, Chicken, and dressing her daughter up as famous women from history. Follow her on Twitter and Instagram @HillarySavoie and Facebook @HillarySavoieWriter

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