In the heart kid community, our kids are usually referred to as our “heart warriors.”
This word makes me immensely uncomfortable, for lots of reasons.
The word warrior, to me, carries violence and anger with it. For whatever reason, I immediately picture the Huns in the movie Mulan.
That image is not my Evan. Nor is it any of the amazing kids I’ve seen taking on a congenital heart defect.
Plus, warriors fight, and I don’t like the idea of any tiny person having to fight for anything. They should be living cozy little lives full of snuggling, learning, smiling, and getting the occasional diaper change.
I believe heart kids are something more than warriors.
When things got tough and Evan’s body seemed to be working against him, Evan didn’t grit his teeth and get angry; he endured.
When things were probably really frustrating for him because no one knew how to help, he persevered.
When we tried what felt like the thousandth thing to make it better, he carried on and communicated with us in whatever way he could.
And, now, he’s not a fighter. He’s a bright-eyed little boy who smiles just about whenever you talk to him. He’s a wiggle-worm. He’s an observer.
He’s far from an angry muscle-man in battle armor.
Sure, he’s got scars, but they’re not from a battle. They’re from a marathon that he will keep on running in different ways for his whole life. He will have more to endure, but he knows how to carry on through the tough stuff that will come in all forms as he grows.
And I hope, when the challenges come, he doesn’t growl and grit his teeth, I hope he keeps smiling and stands tall like the endurer that he is.