Parenting in the time of Coronavirus: What CF can teach the general public

Coronavirus has created a new normal: social distancing, childcare disruptions, self quarantining, constant hand sanitizing, and risk levels changing by the hour. However, many of these experiences are the everyday reality of people living with cystic fibrosis, immunodeficiency, or other underlying health conditions.

Myra, mom to two children with cystic fibrosis, shares some of the wisdom she has acquired over the years, and what she hopes people take away from this experience to help everyone live a healthier life.

Folia: For those of us who aren’t as familiar with cystic fibrosis, what is CF?

Myra: CF is a genetic disease that makes mucus thick and sticky, affecting its ability to lubricate and flush the body of toxins and work in harmony with bodily systems. This affects lung health and digestive health, but can have a host of effects in other areas of the body as well. We use medications and treatments that moisturize and thin the mucus, keep it moving in their lungs, and help the rest of their systems function as normally as possible.

The kids look healthy on the outside. But they work really hard every day to maintain that! When they do get ill, we have an escalation system that starts with extra at-home treatments and medications, and can ramp up to long (and expensive!) inpatient hospital stays to get them back on track. So we know a lot about infection control.

F: What tips and tricks do you have in your infection control toolkit?

M: I was never a germaphobe. I grew up on a farm with my hands in the dirt. But since having children with CF, I’m much more conscious of being in contact with other people or surfaces.

We always have hand sanitizer nearby, and at home we have a dispenser mounted next to the medicine cabinet. We are considering putting another at the front door. We use Clorox brand disinfectant wipes for high touch surfaces at home (lights, doorknobs, etc.) and in our vehicles (steering wheel, seat belt clamps, etc.) The label specifies that it’s effective against pseudomonas as long as the surface is wet for 4 minutes. I use more wipes to get the surfaces wet for that long, but it gives me confidence that the time I put into disinfecting is worth it.

The kids bathe every night they've had an activity outside of the home and we don't re-wear clothes even if they appear clean. Yes, our water bill is high!

I recently read that, although there is no evidence that these reduce the spread of infection, latex gloves can serve as as a visual reminder not to touch your face or other surfaces. And they’re a layer that can be stripped off as soon as you get to your destination, in case you don’t have immediate access to a faucet or sanitizer.

F: Are there things that we should be cleaning more often than we probably are?

M: We have a cleaning service every two weeks to do a base clean/sanitization, and we have carpets cleaned quarterly, 3 rooms at a time. I am grateful for access to these resources, and I wish them for all CF families!

The company that cleans our carpets also offers air duct cleaning. Since we purchase a yearly "package" for carpet cleaning (which is why only 3 rooms quarterly - that's what they offer and we can afford) we’re eligible for a discount on this rather expensive service. After living in our home for 6 years we finally had that done when one of the kids was in-patient, and felt good about the improved quality of air they were coming home to!

I tend to do this kind of thing - finding new places to freshen up, launder, or clean - when one or both of the kids are admitted to the hospital. It’s cleansing for me mentally and feels like a fresh start. Ok, we’re over that hump - let’s come home to a clean slate and start again!

F: You're a working mom. How do you survive the days when the kids are home but you still have to get work done?

M: Given the progression of Coronavirus, starting next week I’m going to homeschool the kids for 4 hours in the morning, feed them lunch, and then put in 4 hours of work in the afternoon and/or after the kids go to bed.

It takes effective time management. I do track how I manage my time. If I know how I’m spending my hours, then I can be accountable.

I’m pretty resourceful about coming up with free activities that play alongside the kids’ current interests and very healthy imaginations. For example, a living room fort is cool at any age and makes the ordinary a little bit different! You can just use furniture and blankets and take the normal living room that everyone is now sick of seeing, and turn it into a brand new wonderland. Maybe stringing some lights up.

That said, many of these activities require some level of supervision. If it's just me at home with them trying to work, they often end up on screens. I’m ok with this for a controlled amount of time, but if I can find "healthy" screen time activities for them, all the better! Educational apps, reading apps (the kids love BookFlix), music (that they can sing or dance along with), yoga, or any other form of movement are great! We use CF Yogi, Cosmic Kids Yoga, and school also uses GoNoodle.

F: How do you empower your kids with knowledge without scaring them?

M: My husband and I balance each other out. We touch base on the message we want to relay, and bounce ideas off each other.

Ultimately we give it to them straight, trying to mix in humor, and always, always with the assurance that it is not their job to worry! The approach we take is: We don’t want you to worry about this, but it’s worth it to understand a bit about why we’re asking you to do some extra things to stay healthy. But there are a lot of people who are working on your behalf - your doctors, parents, teachers, and other people in your community. It’s not your job to worry, but it is your job to keep your hands clean. And if you must pick your nose, use a tissue!

In terms of sharing with friends why we’re homeschooling, my husband gave them the best tool. He told them to simply say, “Because we have CF, we need to be CareFul. So that’s why we’re doing school from home for a while.” They liked this and agreed that it would help to not worry the rest of the kids, who would wonder if they had to homeschool too.

And I know if I’m facing a problem, someone else is too so I look for resources. NPR recently put out a comic with a great tone. The site has a printable and a link to an instructional video to make a little “zine” that they can literally keep in their back pocket!

F: When you get stressed, how do you cope?

M: My at-home yoga practice (and the rare occasion where I make it to physical class) mean everything to me! My fav online resources are Yoga with Adriene (yoga for all!), CF Yogi, and Beam (yoga for the CF community!). With the latter two, not only am I practicing alongside incredible teachers, but also with "my people." My husband and I also see individual therapists and it helps, even if to just unload everything on someone who we feel no responsibility to reciprocate the favor to.

I’m a night person, but I’m going to be diligent about going to bed early so I can get up before the house is full of noise and distractions for my “me time.” Especially in this era, I find myself checking for news updates on my phone. So even 10 minutes to myself before I start checking my phone is a healthy lifestyle habit I want to have.

Another thing that helps is a mantra from author Glennon Doyle: just do the next right thing. Things get overwhelming really fast. I cannot plan for everything or revisit every decision from the past, but I can check in with how I feel and what I know, then do the next right thing, one task and one day at a time.

F: Tips for managing the kids’ health?

M: If I forget to track or don't have access to my notes for some reason, I'll often ask the kids to remind me as their memory is better than mine! I am trying to teach them, even at this young age, to "tune in" so they can articulate what is going on and advocate for themselves. This is a double edge sword, as they learn to wield this to their advantage!

F: Once we pass the outbreak peak, people will return to their old workspaces, hygiene practices, and routines. What would you like people to remember to help people with CF or other underlying conditions?

M: I hope people gain perspective and understanding. People are now looking at life through the lens of a CF family where, despite doing everything you needed to do, things happen outside of your control that cause you to cancel your plans last minute, or have react in order to manage risks. Any risk weighs on you a lot more.

Piper Welsh with the CF Foundation has stated, “Public health is not an individual choice.” I could not agree more. So I’m grateful people are thinking about the community aspect of individual decisions and realizing that your actions affect other people. Everyone is being asked to make individual sacrifices and they are mourning the loss of their normal, so I hope people take away an appreciation for what our normal is.