I want to take a moment to reflect on the idea that, like many parents of children who are medically fragile, I often refer to my daughter as a hero.

I recently read an article that a friend shared on facebook. It was titled “My Child With a Disability is Not My Hero.” The author argues that by talking about children like hers, or like Esmé, as heroes, we are further marginalizing and dehumanizing them. She writes:

Our kids are KIDS, first and foremost. They’re people, human beings, whose value lies simply in the fact of their personhood, not in milestones or hurdles overcome. When we put them on pedestals and call them heroes, we make them something other than human beings. And we give them a standard that, at times, may be hard for them to live up to. They might not always feel like being heroic.”

And I really do hear what she is saying…that our kids should be allowed to be kids, not heroes. And I wish everyday that Esmé could live a life that gave her fewer opportunities to show her tremendous character. But the fact is, she doesn’t…and may never.

And I think the author is missing something sort of key about being a hero. Being a hero is so quintessentially human…it is about a regular person responding with grace to a situation that would make the rest of us sit and cry in a corner…sometimes we don’t know who these people are. We don’t know whether we or anyone around us will be the person to run into a burning building as opposed to away from it until we are faced with the situation.

Esmé happens to have been faced with the situation…to prove her ability to face down a challenge while showing bravery and grace.

Esmé is absolutely, without a doubt, my hero. And I do not mean that in a simplistic way, I mean that in the way that this child goes to battle…not always, not every day…but a totally unfair proportion of her days. She’s lived through things that I cannot think about without crying–being intubated for hours, fully conscious with no pain killers, seizures that I know she can feel coming on over and over and over, drug reactions, and so on.

But, as you all know by now, my child does not just endure these things. She moves through them as gracefully–and I say this with all honesty–as gracefully as I could imagine any person doing. She fights, she gets mad, she cries. She is not Superman, but she never holds a grudge. Sometimes she looks at me like “Why are you asking this of me? Please don’t ask this of me” Sometimes she can’t look at me. But when it is over her sweet little heart finds solace in my arms…and she is often back to smiling and cheerfully chirping.

I guess what I am saying is that she has modeled for me the type of person I want to be: brave, compassionate, patient (sort of), forgiving, joyful, determined, and so on. I don’t feel that seeing her as a “hero” does anything but prove to the world that she is strong, empowered…and certainly not to be pitied…but rather someone to model yourself after, someone to remind us all to take a look at our blessings more carefully…because she is so human, so vulnerable and yet faces her obstacles chin up with a smile.