I’m afraid. In light of COVID-19, I’ve been hearing lots of folks say, “Don’t live in fear!”—and I get it, they’re trying to be encouraging. So I quietly nod my head, sensing that the givers of these platitudes have likely never seen their own small child rely on life support.
In some ways, they’re right. Fear can’t be our only motivator or it’ll prevent us from living, from enjoying the beauty life has to offer us. But for many moms like me who are raising immunocompromised kids, a healthy sense of fear helps us keep our children protected.
It helps our kids stay alive.
For immunocompromised children, a cold isn’t just a cold. A respiratory virus isn’t just a virus. So we research. We take precautions. We become experts in our children, so much so that we have been mistaken for health professionals at our kids’ doctor appointments.
We alter our lives, adapting as we go—I’ve left a playdate when I found out a friend’s child wasn’t fever-free for 24 hours. I’ve taken ribbings from coworkers for using hand sanitizer religiously before meals. I’ve worked from home with kids at my feet when a strain of influenza is going around the school.
I know what you’re thinking: I can’t keep my children in a bubble. And I don’t. But I do take extra steps to keep my babies safe, especially the ones who have underlying health conditions, some which you would never know existed unless I told you. Because for many of our children, a common cold can turn deadly fast. Ask me how I know.
So am I afraid when a global pandemic sweeps through our country? Yes, I am.
As we learn more about COVID-19, we’ve heard that it’ll “only” affect children with compromised immune systems. But there’s another saying going around: “Only the vulnerable will be at risk.”
But your “only” is my everything.
As special needs moms, there’s never not a thousand questions running through our brains. As we’ve watched COVID-19 spread throughout the world, and now the U.S., our brains are on hyperspeed. As we cut crusts off sandwiches and reply to work emails, there’s an inner dialogue ticking by:
What will happen to our local hospitals’ blood supplies? What will happen if our already fragile children need health assistance with something not-coronavirus-related, but because of the spread, there is no access? Will we have access to all the prescriptions my children need? Will our medical supplies still come on time? What will happen if my husband or I get sick? How will I protect my children? Will there be enough protective gear?
Because nothing can prepare you for seeing your child on life support. I’m forever grateful that my daughter received the care she needed when she was, and I would never wish the experience on my worst enemy.
The tangle of tubes, the beeps of machines keeping your child alive is something you never forget. When my 3-year-old daughter developed viral pneumonia from a common respiratory virus last year, her little lungs were attacked and her condition deteriorated quickly. Soon, the only thing keeping her alive was an oscillator, a machine even stronger than a ventilator. All I could do was thank God for modern medicine as I gingerly held one of her hands, watching the read-out of numbers rise and fall.
Those of us who have watched a child need life-saving interventions and life-saving blood in the pediatric intensive care unit are afraid of the havoc the coronavirus will wreak on our already overloaded health care systems.
We’re intimately familiar with specialists and labs and blood draws. We’ve ridden in ambulances with our little ones, seen the inner-workings of more emergency departments than we have ever cared to. And we know what a pandemic could do to our hospitals. And how it could affect everyone.
Because we know how full those intensive care units are on a non-pandemic day. We’ve seen how tirelessly and compassionately the doctors, nurses, respiratory therapists and countless staff work on an ordinary day.
We know how an available bed can be the difference between life and death. We’ve seen how seasonal influenza leaves children waiting in the emergency department for multiple nights, waiting for a bed to open. And we’ve heard what the doctors in Italy are telling us—if COVID-19 continues to spread, doctors will have to make the gut wrenching call on whose lives should be saved.
Now that it has become clear that social distancing is our country’s biggest chance at slowing the spread of COVID-19, parents of special needs children like me want to say something to every single person who has canceled plans and disrupted ordinary life for the greater good—
Your selflessness matters. Your compassion is felt.
I know it’s difficult to socially distance yourself from loved ones and friends. That it’s exhausting and scary. I know the allure of having a playdate. Goodness knows we weren’t meant to do life alone.
But in this time of a growing pandemic, to everyone who has stayed home and kept their children home as much as they are able, I want you to know that it’s not an exaggeration when people say that you have saved lives. Lives within vulnerable populations, like two of my children.
So from all the immunocompromised children (and parents) out there, we want you to know that social distancing matters. Please help us flatten the curve. Stay home as if lives depend on it—because more lives than you know actually do.