Reopening with At-Risk Kids

“I wish the coronavirus would end so I can see my cousins again.” My seven-year-old daughter scooches her chair away from the kitchen table where she’s lost all interest in her dinner. I squeeze her hand, watching her quivering mouth as pools of water fill her beautiful eyes. There they go, over the edge; first a trickle, and then a waterfall of tears releases her pent-up grief while her older brothers chow down on roasted potatoes.

I assure her that sadness is proof of how deeply she loves. I remind her that we have much to be thankful for. But my words are like a couple of Jersey blueberries hitting the bottom of an otherwise empty metal can.

Plink, and plink. They don’t go real far.

Because three of my five children are at risk for complications from COVID-19, the hardest part of living with this pandemic may be just beginning.

Lifting Restrictions Isn’t the Same as the End

My children didn’t like it, but as governors across the nation began introducing various iterations of shelter-in-place orders back in March, it wasn’t hard to convince them that we needed to follow suit and stay home. Now that states are reopening from near lockdown and beginning to ease restrictions, many people anticipate a gradual return to something that resembles life before COVID-19.

But parenting my children through reopening is complicated. How do I explain that what may be all well and good for some people might not be for us?

My daughter wants this virus to end; what she doesn’t know is that lifting restrictions doesn’t mean the end of the virus, its threat, or its impacts on her life. This is a reality that she—like many of us—finds hard to swallow.

It may be the end of shelter-in-place, but it’s only the beginning of social distancing. There’s no fairy godmother to wave her wand and say we can give hugs and schedule play dates tomorrow. There’s no dancing and kissing in the streets because the Berlin Wall came down. It feels like the opposite. It feels like invisible walls are going up all around us.

This is especially true for families like ours who are at risk for complications from COVID-19. Lifting restrictions doesn’t open the door much wider for us. Instead, it opens Pandora’s box, especially as a parent. What people, activities, and places can I say yes to—safely?

It might be different if we lived in an obscure part of the world with no record of COVID-19 cases. But we don’t. We live in New Jersey, the state that according to Johns Hopkins has seen the second highest number of COVID-related hospitalizations and deaths in the United States.

Protecting Children with Underlying Conditions

When this virus hit pandemic scale, my preparations included more than a record stock-up at the grocery store. I created a binder listing medical history, medications, and doctors for each of my children. It was an unpalatable thought, but I knew that if our family contracted the virus, there was a high likelihood that one or multiple family members would experience complications; we might even face separation. That’s because our family has a genetic condition called alpha-1 antitrypsin deficiency.

In 2013, the diagnosis of one of our children with this rare deficiency prompted the testing of our entire household. To our shock and sorrow, we learned that my husband and I are carriers, and three of our children have the most serious form of alpha-1, a condition that the Alpha-1 Foundation website says “may result in serious lung disease in adults and/or liver disease at any age.”

Because there is currently no cure for this condition, over the past seven years, my husband and I have focused on preventing those impacts. All three of our alphas have asthma and their combined medical history includes elevated liver enzymes, bronchiolitis, RSV, and repeated pneumonia.

Each serious illness avoided preserves the health of our children’s livers and lungs. This includes COVID-19—a virus that’s so new that there hasn’t been time for even the best pediatric researchers to do research let alone interpret and apply the findings.

According to the CDC, “More data are needed to learn which underlying or complex medical conditions may put children at increased risk.”

What we do know is that a report in the Cell by researchers at Harvard Medical School, Boston Children’s Hospital, and MIT supports the observation that this form of coronavirus goes for the lungs. Also, when considering the adult population, limited data demonstrates that it poses a much greater risk to people with underlying conditions. Consider recent research by the American Medical Association.

While it’s too early in the game to know how COVID-19 impacts children with pre-existing conditions, it seems safe to assume that my children would be more susceptible to complications than those without.

The CDC cautiously agrees. “The most common underlying conditions reported among children with COVID-19 include chronic lung disease (including asthma), heart disease, and conditions that weaken the immune system. This information suggests that children with these underlying medical conditions may be at risk for more severe illness from COVID-19.”

It Helps that I’m Not the Only One

My friend Christina’s son has a genetic heart condition. She told me, “I’m not concerned only that my son will die if he becomes infected.” It’s true as of May 8 only one child under age eighteen had died from COVID-19 in New Jersey. While death would be an unthinkably horrible thing, the statistics are in our favor. Nevertheless, my friend wonders, “How would this virus impact my son’s quality of life if he were to survive?”

Parents such as my friend Christina and I don’t want our children to be test cases to find out how dangerous COVID-19 is to children whose health is already compromised. Instead, we say not yet.

We say no to certain kinds of outings and gatherings out of love for our children. Even when they don’t understand. Even when we wish we didn’t have to. Even when we might seem overprotective. And even when another mom might say yes. What’s permissible for one family might not be advisable for another.

It doesn’t make it easier, but it comforts me to know that I’m not alone. I imagine myself linking arms with people across the country who are asking questions and doing what they can to protect the vulnerable members of their families.

My husband and I don’t know all the questions to ask, let alone the right answers. Will our family go on a vacation this summer or not? What will school look like next fall? What can we say yes to between now and a COVID-19 vaccine? What we do know is that our choices must take our family’s unique set of risk factors into serious consideration.

I don’t assume I can prevent my toddler from falling down the stairs, but I’ll fasten the baby gate. I don’t presume protection for my children from every illness, but I’ll minimize their exposure to a known risk called COVID-19. I do this because a loving parent does what he or she can—all the time recognizing the existence of realities beyond his or her control. If it turns out I’ve been overly protective, it won’t be out of fear but love.

I want to say yes to my daughter when she asks to play with her cousins. I want to say yes to a lot of things. Actually, I have said yes. My daughter saw her cousins on her birthday, smiling and hanging out of a rolled-down car window. They saw each other while playing Mad Libs on the phone recently.

But if “seeing” cousins means whispering secrets in one another’s ears, touching the same toys, and eating a meal at the same kitchen table where my daughter now sits crying and where they’ve squeezed their tooshes close together on a bench to eat spaghetti countless times in the past, I say no. Not now. Not yet. I love my children, and real love always protects.

And while saying no during this time of reopening might be the hardest thing I’ve had to do yet in light of this pandemic, it’s not as hard as the potentially nightmarish scenario that contracting the virus could be for our family.

*This post was written in May 2020. At the time of publication in June 2020, my husband and I continue to navigate these deep waters, praying for wisdom and grace to love our children and steward their health well during what has so often been labeled “unprecedented times.”