What Does it Mean to Call My Daughter Brave?

I feel like people toss around the idea of bravery a lot when they are talking about children with medical challenges. As I am laying here in a hospital crib, at four am, pinned under a sleeping Ezzy, unable to sleep myself….this is what I find myself thinking about:

What does it mean to call my daughter brave?

My daughter Ezzy has been sick these last few weeks. We’d kept her home, working carefully with her wonderful pediatricians’ office and home care team to keep her out of the hospital. In the last week we’ve spent no less than seven hours over four days in the doctors’ office. But Esmé took a little turn and we decided that she needed to be seen in the ER yesterday. This meant routine work ups–chest X-ray, IV placement, catherization, blood draws, exams by a half dozen doctors–as well as some simple things that are really tough for Ez–like fighting to see in her throat, something that is difficult as a direct result of the medical trauma she experienced as an infant.

Looking in her throat requires coaxing/prying open her mouth with a tongue depressor and a subsequent coughing/retching/spitting up routine. So far we know she has two viruses: Adenovirus and RSV. We are also treating her with antibiotics until we have more information about potential/suspected bacterial infections.

[clickToTweet tweet=”People toss around the idea of bravery a lot when talking about children with medical challenges” quote=”People toss around the idea of bravery a lot when talking about children with medical challenges.”]

As I think about today, and really, any day, I know that my daughter is certainly one of the bravest people I know. She stares down things that make grown-ass adults weak in the knees. Many many times I have watched Esmé go through frightening things, painful things, challenging things and just somehow manage to not be wrecked by it…even as her Maman wants to curl up in the corner and cry.


Sometimes, I realize though, that it is just that she doesn’t know any different. Esmé doesn’t know that all kids aren’t regularly subjected to these kinds of awful procedures. This–hospitals, doctors, procedures–it’s all she’s ever known. It’s normal to her, although, mercifully, it’s far less frequent lately than in the past.

Sometimes she seems brave because things aren’t actually as big of a deal as we make them out to be. (I’m giving you, mom who complains about traumatic vaccinations, the side-eye).

And sometimes Ez seems brave because she is a just straight-up a seriously tough cookie.

It has to be said though, that sometimes, sometimes, she isn’t brave. Sometimes she is terrified.

What does it mean to call this genetically different little girl brave? Touching article from a mom who has to hold her medically fragile daughter down for more tests... Sometimes she feels pain and shows it. Sometimes, I’m sure, she doesn’t want to be brave…and has to be pushed and pinned and held into doing something that has to happen for her safety. Sometimes she doesn’t have a choice. Sometimes it is just awful…and unfair.

This is the problem behind talking about how brave kids who go through things like this are… Because they are so often so brave–at least they often seem to be so brave–and it is a pretty humbling thing to watch. It puts all kinds of other things into perspective. But also, and this cannot be emphasized enough: Ezzy is just a kid.

All the other sick kids? They are also just kids. Each of them. Kids whose hospital trips should be “that one horribly scary time we had to go to the ER,” not the ER: “the place where everybody knows your name.”

Talking about the bravery of sick kiddos isn’t a bad thing, but sometimes it masks the things that people who don’t have to think about don’t want to think about: kids’ suffering…the undeniable reality of that kids suffer. And it is so wrong. But it is also very true. It is true and real for Esmé–even though she cannot say it, even though she has no choice but to go through it.

Talking about the bravery of kids like Ez can diminish their experience of pain. I know this because it is one of the things I tell myself when, like yesterday morning, I lay a good portion of my body across hers to hold down her jumping, fighting, sneaky arms and legs so she doesn’t get loose and dislodge the IV being threaded through her difficult and delicate veins. I say over and over to myself to make me feel ok about using my love for her in this way: She’s so brave. She’s so brave. She’s so brave.

And she is so brave.

But it isn’t her job to be the one who’s bravery is the biggest in the room.

She’s allowed not to be brave.

It’s my job to be brave enough to allow her to be scared.

[clickToTweet tweet=”She’s allowed not to be brave. It’s my job to be brave enough to allow her to be scared.” quote=”She’s allowed not to be brave. It’s my job to be brave enough to allow her to be scared.”]

Esme has multiple genetic mutations including PCDH19 Epilepsy or SCN8A Epilepsy.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s