#CHD Aware Parenting

A few years ago, I wrote about the Ripple Effects of Living with Congenital Heart Defect. It is a glimpse behind the curtain at the multiple medical tangentials that came along with CHD and have made Charlotte’s journey so much different than that of most of my friends’ kids. Sure, your kid might have scoliosis and braces, but they probably didn’t also have a g-tube and plagiocephaly and a paralyzing fear of needles. I’m not whining about having it worse than you. Just stating the facts: We’ve had it different and the baseline of that difference is CHD.

Yes. Grown and almost grown women play in the snow. Meet Blobby Barnes, named after one of C’s favorite MCU characters because they both only have one arm.

Like almost everything I’ve written, that post was about Charlotte, as witnessed by me and Philippe. It was for the “Charlotte Watchers,” as I’ve long thought of our friends and family (in a direct homage to my late dear friend Jen Perlman).

What I’ve never written about, even in my journal, is how the witnesses felt. I can’t say that Philippe and I ever talked about what we felt for ourselves, at least not as the moments unfolded. Our singular focus was to maximize Charlotte’s success—at all levels. And, I don’t remember anyone asking us, at least not after Charlotte came home from the hospital in June 2005.

Looking back, I can honestly say that I spent the first five years of Charlotte’s life sandwiched between joy and grief. Joy that she was alive and finding a way to thrive and grief for all we would never have—siblings for her, a babyhood full of the regular stresses of messy eating and muddy crawling. The condiments on the sandwich were loneliness, fatigue, and anger (the last was really perimenopause, but that’s a story for another blog. In other words, We’ve discovered since then that Charlotte’s her medical anxieties were induced by childhood medical trauma. Turns out I have suffered my own version of medically induced PTSD. For what it’s worth, I’m not self-diagnosing; three different psychologists have concurred and my PCP agrees.

This, then, is one of the other ripple effects of living with congenital heart defect—the isolation of the parent, sometimes even from each other, and the scars that linger long after the danger is gone. It’s harder to write about because it’s more personal, deeper, and more painful. It takes more introspection and requires a leap of faith in my readers. It defies the “live in the moment” axioms of our culture and the “get over it, stop thinking of the past” of my closest circles.

Plus, there are the double fears that no one cares (the cute baby is the focus, right?) or that the “Charlotte Watchers” will be offended that I felt loneliness. “I was only a phone call away,” I can imagine hearing. “Yes,” you were, “with your toddler and your six-month-old, your fulltime job, and I just couldn’t look at all that happiness. Or maybe I didn’t want you to see the messiness of our lives.” All those people who turned up for my father-in-law’s shiva in 2006, having never met the man, probably would have offered any support we needed for the baby they cooed over. But shiva provides a ritualized opportunity to show up; a sick baby just doesn’t.

If the Great Pause has taught us anything, I think, it is to ask for help. Maybe even to look differently at our friends and neighbors and offer help before we’re asked. While mothers have long suffered isolation and overwhelm, to varying degrees, The New York Times just recognized that for the first time with a special section yesterday called, “The Primal Scream.”

I hope that parents thrust into heart battle will know they are not alone, that they have a community of other heart parents. And that more importantly, they have a community of the people who loved them before that ugly ultrasound.

It took me years to realize that this blog has been a witness’s blog. Every time someone (okay, mostly my mom) has said, “You should turn your blog into a book,” I’ve struggled with how to do that. What’s the angle? Most of the blog is about the feeding issues, not the CHD, but that’s not the defining element of our lives. What’s the “so what”? There is no tragedy here (folks, tragedy and recovery sells), and I have no complaints about that. Even after a book proposal workshop with one of my favorite memoirists, Esmé Weijun Wang, I’m still stumped.

During this #CHDAwareness week, I wonder if it’s about the weight on the witness. And if I’ll ever have the courage to tell that story.

Corashopesanddreams.org graphic: Every 15 m

Want to know more about how CHD affects American children? Visit the American Heart Associationhttps://www.heart.org/en/health-topics/congenital-heart-defects.

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