3 Things I Want My 'Heart Kid' to Know

My son Malcolm was born with a variety of complex heart defects, including hypoplastic left heart syndrome (HLHS), double-outlet right ventricle, and transposition of the great arteries, among others. He’s got a snaggle-toothed smile and an awesome cowlick. I didn’t ask to be a heart mom, and he didn’t ask to be a heart kid, and yet here we are, three years into our wild and unpredictable journey together.

There are so many things I want Malcolm to know now, and as he gets older. Little things, like “You can’t microwave eggs in their shells,” and “Off-brand crayons might as well be garbage.” And bigger things, like “Life isn’t fair,” and “Never start a land war in Asia.”

But these are the three most important lessons I want my heart kid to internalize:

1) Our journeys are not the same.

We’re in this together 100 percent, and we have been since the day you were conceived. Your health journey is a team effort, a group venture we’re all contributing to. You and me and Daddy, your sister, your grandparents, your doctors and nurses – we’re all working towards one goal. But I never want you to think that I know exactly what you’re going through. I don’t.

I have no idea how much it hurts to have my sternum broken repeatedly or to carry around 20 different scars. I don’t know how it feels to be 3 years old, not sure what’s happening or why, and scared that I’ll never get to leave my hospital room again. I don’t have to take medicine that gives me dizzy spells; I’m not dependent on a feeding pump or a nebulizer. I don’t struggle when I climb the stairs or panic because I can’t catch my breath.

I can’t begin to know what it’s like to be you.

You don’t know what it’s like to be me, either. You’ve never known a different life, but I can remember a time when I didn’t have to have a detailed working knowledge of pediatric cardiology or a strategic appointment calendar. You’ve undergone physical and emotional pain, and so have I, of a different variety. No parent should have to watch their child slowly suffocate. As parents, we’ve had to choose between being there for your sister’s first day of kindergarten or staying by your hospital bed.

We’ve both suffered so much, lost so much, cried so many tears, celebrated so many triumphs. But you are your own person, and so am I. We don’t have to have the same experiences or feel the same feelings about your diagnosis. You get to decide how you react to your heart defects and so do I.

2) I wouldn’t change anything.

People often ask me if I wish things were different. It’s important to me that you know that the answer is a resounding no.

No, I don’t wish you had two ventricles. No, I don’t wish you were “healthy.” No, I don’t wish you were “normal.” No. We are all shaped by our experiences, and you are who you are because of what you’ve gone through over the last three years – my brave, funny, plucky, smart, silly little guy. To wish any differently is to wish for a different son. If I could go back in time and form your heart correctly, I wouldn’t do it. I am well content to let things be as they should be.

Right after you were born, one of your PICU nurses told us that we were lucky. Can you believe it? You were 3 weeks old, fresh out of open-heart surgery, and she told us we were lucky.

“Heart kids are the happiest human beings on earth,” she said. Turns out, she was right. Your life started out with so much trauma that pretty much everything else feels great. You are the most joy-filled person I know.

Daddy and I made a conscious choice after we left your 20-week ultrasound. We were for you — the whole you — no matter what. No what-ifs, no regrets. Of course I wouldn’t change anything.

3) Your heart defects do not define you.

Your heart condition has shaped most of the events of your short life so far, there’s no getting around that. But I never want you to feel like your personhood is defined by your defects. So you’ve only got one ventricle. Who cares? I want you – and everyone around you — to focus more on the fact that you’ve got a wicked sense of humor, and a sweet little singing voice, and a unique affinity for Korean cartoons. You’ve had 16 surgeries, but you’ve also had 16 cool vacations with your family. You giggle with your sister and get mad at your blocks when they don’t stack up right and like to snuggle your mom and dad, just like every other 3-year-old.

I’ll be here to make sure nobody puts you in a box when you’re a preschooler, but as you get older, you’ll need to define yourself for yourself. People are always going to try to feel sorry for you; don’t let them. Everyone’s got scars they carry through life – yours are just a little more obvious, that’s all.

You can choose to see yourself (and let others see you) as a “heart kid” with limitations, or you can choose to view yourself as an eternal human being with a bright future and a lot of choices.

There are so many other things I want you to know as you go through life, little buddy. But as long as you know who you are (and who you aren’t), I think you’ll be just fine.