The Iron Man of Parenting (When Your Child Is Really Sick)

by Hilary Camille
Originally Published: 
Hilary Camille

There is a lot about parenting that really sucks. Potty training. Middle-of-the-night vomit. Sharpie all over the wall. Public vomit. Blowouts at your favorite restaurant just as your food is served. These things you laugh about with your girlfriends over a third glass of wine. Sometimes I wonder how we ever have second children. But there is that magical forgetting, and there we are, holding our second positive pregnancy test. Magical.

Sometimes, though, things go wrong. And there is no girls’ night out that can fix it.

“There’s something wrong with your baby’s heart,” I hear a voice that suddenly feels like it’s coming from the bottom of a shoebox at my 20-week ultrasound. Doctors drew pictures of my baby’s heart. Nothing seemed real. Over the next 17 weeks, I ran the triathlon of ugly cries. God, I was scared.

It took a lot of courage to show up at that hospital the day I was induced. I wasn’t ready. Still, she had the loudest cry when she was born — a prizefighter with a broken heart. Right then, I knew we could do it. I hitched up my big girl pants, rolled up my sleeves, and became her mother.

When she was 9 days old, I sat through her first seven-hour open-heart surgery. I watched parents wringing their hands in the waiting room, watching for signs of the surgeon to come report to them. I belonged to the sorority of worry. My purse was full of soggy Kleenex; my face was so red and puffy I looked like I just went three rounds and tapped out.

But I survived.

And better yet, so did my prizefighter. But things didn’t go well. She had round after round of complications. Round after round of “sorry, you can’t take your baby home yet.” We spent six months in that hospital. I’m not sure if it was more fear or coffee that I lived on that year. I was definitely caffeinated. Every day, I was the first to arrive at morning rounds. I stood there with doctors who had degrees longer than my arms and defended my gut feeling about my baby. I got a reputation.

But I was her only voice.

Years later, I still am. A whirlwind of medical equipment has swept through my living room. I’ve been there when things went right, and I’ve been there when things went very wrong. I’ve held her hand on the front lines. She’s had four open-heart surgeries now — her fourth was a transplant. She now has the heart of a 4-year-old boy beating in her chest. Did I just say that?

To keep rejection at bay, we have to suppress her little immune system. Colds are hard, flus are even harder. I have to resist loading a Super Soaker with sanitizer and hosing down anyone who approaches her. As it turns out, hazmat suits are not fashionable in kindergarten. Who knew? Despite me, she has a wonderful life: school, friends, parties, swimming, hiking, even public vomit.

Who ever thought I’d be grateful for public vomit?

So here’s the thing to know if you’re a mom (like I was) who is about to begin the Iron Man of Parenting: You’ve got it in you. This is your destiny, and you were made for it. It really is a gift in disguise — they’ll teach you more than you can ever imagine.

Stand up for your gut feeling — always. Write things down. Commit to memory the feel of her hand in yours, the soft tendrils of hair on her cheek, and the sound of her singing. Rock her to sleep until she’s 8. Take a crapload of pictures.

One day, you’ll be walking her through the kindergarten doors. Believe in that. Until then, ugly cry with your girlfriends. But stay in the moment because the future can be scary as hell. It doesn’t help anyone to get all future-y, Mama. Be here now.

You’re in for the marathon, not the sprint. There is no finish line. Now go be her badass. I’ll high-five you along the way.

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