Feeling hopeless? Uncertain? Fearful about what’s to come?
Welcome to the past 12.5 years of my existence.
Most parents experience the birth of a child as a life-changing event; for me and my husband, it was literally true—it changed every single fiber of our existence. Our beautiful, 9-pound baby boy, Kellan, was diagnosed with cystic fibrosis, a disease we’d barely heard of (which seems unimaginable now), and we were thrown into a state of being that I can only describe as a combination of boot camp and a pulmonology residency.
Germs of any sort were quite literally our mortal enemy.
As we learned more about this life-threatening genetic disease that clogs the lungs with sticky mucus, one thing became crystal clear: Keeping our son’s airway clear was now our top concern, our essential mission, 24 hours each and every day for the rest of our lives. And that meant that germs of any sort were quite literally our mortal enemy. From people, from objects, from the little crevices in the showerhead—germs are a death threat to our immunocompromised boy.
And they’re everywhere. Suddenly, we saw everything at a microscopic level, our field of vision a black light searching out microbes invisible to the naked eye. Public gatherings became land mines, innocuous get-togethers like Russian roulette.
That sense of helplessness you have? That’s been our everyday life ever since. That frustration over hitting the pause button on life, the inconveniences of staying home? Been there, wrote the postcard. The tiny grievances building up among cooped up family members? That too.
Nothing about managing a chronic disease is straightforward, no decision a given. A wise nurse once told us that this disease is always in the car with us; sometimes it drives, sometimes it’s tucked into the trunk. We cope by taking advantage when this reckless driver isn’t crash-coursing us toward a CT scan or an emergency trip to the doctor.
We lean in fully to everyday pleasures, capitalizing when good health is with us by taking memorable family trips, by bringing our three kids, including Kellan, to a Broadway theater—always with a vat of hand sanitizer in tow.
So you might say we’ve been prepping for this COVID-19 moment for the past 12 years. We know this drill. We saw it coming, making the difficult decision to take all of our kids out of school a week before they closed down and made that decision look eminently prudent, not impetuous. We withdrew before the withdrawal became a public norm. We are handling the preparation and the hunkering down as we always do, with fierce determination and forced calm. Our family members and close friends understand why we can’t see our elderly parents or our new nephew or those friends who are family. And they’re following our lead and self-quarantining as much as is realistic, because they’ve been there with us, too.
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They say misery loves company, and right now it’s reassuring to know that we’re all in the coronavirus containment efforts together.
I am sad that people are so fearful, and rightly so—and I wouldn’t wish our daily sense of dread on anyone. But I’m hopeful that this experience of social distancing will help people understand and empathize with our situation a bit more. That it will make us feel less awkward explaining on some regular, non-coronavirus day to come why our other children can’t attend that sleepover or I have to cancel our dinner out (again).
In the meantime, I hope that everyone will take a cue from the immunocompromised community—we know a thing or two—and unplug from daily life until this virus is contained.
Because yes, you will most likely be fine if you get it, and that’s a good thing.
But there just may be a vulnerable child and his vigilant mama somewhere in your midst.
Fiona Leonard is an interior designer and mother of three. Her essay, "My Pandemic Parenthood," about her family's experience caring for her son with a comprised immune system, has been reprinted with permission. The opinions expressed are her own.
