Don�t Call Me Brave

By Julie Titterington

My son Malcolm was born with several serious, complex congenital heart defects. They all have hopelessly specialized medical names � hypoplastic left heart syndrome, double-outlet right ventricle, transposition of the great arteries � which we usually just condense down into more palatable acronyms. The gist of it all is that the left side of his heart is useless. Everything is either upside-down or backward. If God gave a box of parts to a group of bonobo monkeys and instructed them to create a heart, this is what they would come up with. It�s great and all, but I wish they would have read the manual.

Julie Titterington’s son was born with several serious, complex congenital heart defects. Right now, Malcolm is a pretty typical 5-year-old. He�s obsessed with the Paw Patrol and loves to put on plays with his big sister. But despite looking just like every other preschooler in America, Malcolm has already undergone 17 major procedures, including three full-blown open-heart surgeries. Malcolm’s mother shares what she goes through daily as a heart mom and why she doesn’t like to be called brave. Watch the video to learn more about Malcolm and his mother’s daily struggles.

There are surgeries to correct defects like these, thankfully. It�s now possible now to jury-rig defective hearts and make them work well enough to get the job done. Mal has already undergone 17 major procedures, including three full-blown, bring-out-the-bypass-machine-and-the-bone-saw open heart surgeries. The end result is, er, interesting, but it is functional.�

Right now, Malcolm is a pretty typical 5-year-old. He�s obsessed with the Paw Patrol. He puts on plays with his big sister. He loves on his baby sister and gives her dubious presents, like rocks. He even looks pretty normal to the layperson, unless his shirt is off. (Zipper scar, anyone?) Medical professionals might notice that his skin is a little gray, or that his breath comes a bit more quickly than it should. But for all intents and purposes, my son is just like every other preschooler in America: cute, sweet, stubborn. A little stinky.

And me? In between Malcolm�s surgeries and medical scares, I�m pretty typical, too. Like most women in their mid-30s, I divide my time between my husband, my kids, work, friends, housekeeping and episodes of the Great British Baking Show. In fact, I probably resemble you in almost every respect. I put my Spanx on one leg at a time.

So please stop calling me brave. Please.

Stop telling me I have great courage or that I�m amazingly strong. And above all, don�t tell me you could never do what I�m doing. Just � don�t.

Let me let you in on a little secret. There is one thing, and one thing only that motivates me to act the way I do, and it�s not bravery, believe me. I do the things I do for Malcolm because I don�t have any other choice.

I didn�t choose to grow a baby with a wonky heart. I didn�t select what type of pain he would endure, what challenges we would face or how much suffering would be involved. If I continue to take good care of my son, he will likely survive until adulthood. If I don�t, he won�t. But that�s the position every parent is in, regardless of their children�s health status. Making sure your kid stays alive and is reasonably happy isn�t brave. That�s just normal human behavior.�

You wouldn�t attribute bravery to someone for, say, deciding to pay their taxes. Those who continue, day in and day out, to eat and sleep and void their bodily wastes aren�t lauded for their enormous courage. People do what they have to do to stay alive and comfortable, because really, what�s the alternative?�

So when you say you could never do what I do, please understand that it actually rubs me the wrong way. You could do what I�m doing if you had to, and you would. And when you tell me I am brave and inspirational, please know that it simply makes me uncomfortable and a little sad. You know who�s really brave? Firefighters. People who volunteer with Doctors Without Borders. Middle school teachers.�

Your words are genuine and come from a place of compassion and sympathy, I don�t doubt it. All you want to do is take away some of the pain. You�re trying to lighten my load because you love me, and also because you�re scared that something like this could happen to you. I get it, I really do. But you could be doing lots of things to ease my burden that don�t involve making me into something I�m not.�

Why not tell me I�m handling the stress well, or that I have a healthy perspective on what�s important in life? I�m all ears for that kind of stuff. You could always bring me some peach iced tea or whisk me away for a coffee date. When all else fails, wrap me up in a big bear hug and tell me you�re sorry about what�s happening and that you�re here for me.�

If you still insist on calling me something, call me determined, kind and persistent. Plucky works, too. You could call me �this generation�s Rita Hayworth� or �the best baker since Mary Berry.� Heck, call me Bob if you want to. I don�t mind.�

Just don�t call me brave.

Julie Titterington is a freelance writer, a proud Oregonian, and the Editor-In-Chief of Merchant Maverick, a website that provides small business resources. When she�s not writing or wrangling three kids, Julie spends her time reading British mystery novels, baking and trying not to burn her kitchen down.