I feel like the people toss around the idea of bravery a lot when they are talking about children with medical challenges. And 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 Ezzy brave?

Ez 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.

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 latelythan 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. 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.


  • I had a friend who had childhood cancer when she was 10 and she told me that she wasn't scared at all. She thinks that it was tougher on her mom and dad than her because she was too young to even understand what was going on with her. I always found that eye opening.

    I wish you all the best.

  • Some nurses think I am weird for encouraging my daughter to be spunky and annoyed at medical professionals…. And then the awesome nurses totally get it. I'd do much rather see my daughter glare at the lady with the needle than just lie down and take it… But then, she's from an orphanage situation and encouraging appropriate emotions is a huge part of parenting her.

  • Haha! So true! And it makes a lot of sense that you need to give her that extra attention in the area of self-expression. And, how interesting to see how the nurses react! At the core I love that Ez fights…I feel like I try to focus on that a bit more with Ez because of her lack of communication…and because she has been subjected to so much. At the same time, I often find it so hard to watch (I don't typically show it, though…) that I must admit I wish she fought a bit less.

  • Thank you for writing this. I find people don't understand when I don't jump right on board with their 'he's doing so well' comments. He shouldn't have to be 'doing well', he should be just doing, like a baby, but he hasn't been able to. People have a need to put a positive spin on things and it's sometimes really nice to just have someone share the reality with you instead.

  • I had a PICU doc tell my son (right before a scary procedure), that being brave was feeling scared but pushing through anyway. Doc compared my son to my brother- a soldier that my son views as fiercely brave, strong and courageous. He guaranteed my son that his uncle was BRAVE and SCARED sometimes… And we have never viewed "bravery" as some generic, catch-all term ever again. I enjoyed the post, thanks! (Visiting from Complex Child).

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