Living and parenting with long-haul COVID

by Marissa Marangoni

Parenting is hard. If you’re reading this, you already know that. Parenting is harder if you’re sick. You probably know that, too.

I’ve been a parent since 2016, and the sickest I’ve ever been under the title of “mom” was in 2017 when J was 7 months old. Both my husband and I caught some kind of flu-ish thing. Every inch of my skin felt like it’d been rubbed raw with sandpaper, I had a high fever, and all I could manage to do was sit and lie down. J spent a lot of hours jumping around in one of those baby jumper seat things while my husband and I took turns sleeping, barfing and caring for the baby. 

Being sick made everything about parenting a baby hard. Changing diapers was awful, holding him was painful, and dealing with feeding him was pure misery. I have one very vivid memory of holding J to my chest and clenching my teeth to keep from throwing up on his bald little head while he nursed. I ended up losing my milk after about 8 hours of the descent of this virus, making the whole event a stressful and not restful 72-hour experience for everyone involved. However, after those 72 hours ended, we happily moved on with the rest of our year.

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Having COVID, unfortunately, did not end after 72 hours. The time my husband, J, and I spent actively sick was not nearly as bad as that 2017 flu event, but the part where we didn’t exactly get to move on has been worse. 

We got COVID before it played a role in our American lives at all. It started with my husband in late February, J got it about a week later, and I got it right at the end of the first week of March. There were doctor appointments, X-rays, coughing, fevers, wheezing, and loss of taste and smell. We were never officially diagnosed with the disease, but there weren’t any tests for us to take at the time, and our symptoms fit the standard COVID profile. Our insurance paid all our medical bills, which we were surprised to learn when we got the paperwork in the mail showing a balance of $0 and listing every reason for service as “SUSPECTED COVID.”

I am fortunate to have a partner who lives with me. When we had active COVID infections, we were able to trade around our parenting shifts so one of us was able to rest while the other dealt with the endless stream of snacks to our child. J watched a lot of TV. He played by himself. We set him up at the table with Play-Doh and markers and let him loose with a garden hose in the backyard on more than one occasion. It wasn’t easy, being sick with a small child, but it never is, and it was OK. 

Once we were past the initial three days of infection, we were each functional again. Of the three of us, my husband had the most severe case of COVID, requiring lung X-rays and dealing with a nasty cough that lasted six weeks. J had a mild case, with five days of mostly just fever and a cough that went two days longer. I was in the middle of them with respect to severity, but by the time I lost my sense of taste and smell and developed a faint wheeze, Ohio was shut down and there was no way I was going to a doctor because I mostly felt fine and wasn’t about to go places where people definitely had the virus. 

It’s funny to look back at things: I was nervous about going to the doctor a second time, and I thought I was making good decisions avoiding places where COVID likely would be, not realizing my own house was Ground Zero at the time. Sometimes I wish I would have returned to the doctor. Sometimes I don’t. I’m not sure what they would have done for me anyway.

I don’t think I need to tell you that COVID-19 is a weird disease. Some people get it and get over it. Some don’t survive it. Some people never even have symptoms. And others get to enjoy long-lasting effects of the illness that no one knows how to fix. I’m in the last group.

Still, I survived. My symptoms continue, but there are so many others who have it much worse. I’ve been able to keep working. I can still be physically active most of the time. And, now, I have more time when I feel like myself than I don’t. 

I’m not entirely sure when I started suffering COVID symptoms after the infection. Reflecting on all the time since March 2020, I suspect it’s been much longer than I have official evidence of, but because it has all just been so strange, it’s likely that I didn’t notice it until it got, well, noticeable.

I’ve been running a low-grade fever since the middle of December. I noticed because it was accompanied by chills, and I expected that in the hours or days following, I’d find myself shut down with the flu or my standard intense winter sinus infection. Neither of those things happened.

The hardest part of this whole thing hasn’t been the thing itself but the part where I have to parent while I feel like crap. And that wouldn’t even be so bad if the crap state was more predictable. Since it’s been going on a while now, I am aware of when I have chills versus when I just feel cold. I know I’m starting a fever as soon as it happens by the way my breathing changes. However, I don’t know when the fatigue is going to hit me so hard that I have to lie down or I’ll pass out, but when it does happen, I’m not a super fun mom. This whole thing has whittled away some of my patience. It makes my get-up-and-go a lot slower than it used to be—sometimes killing it completely, which, you know, doesn’t help when you consider I already had issues there to begin with. 

The hardest part about parenting through COVID is the guilt. The little voice in my head that says, “You should be doing more. He shouldn’t watch so much television. He needs you to get on the floor and play. Why are you making peanut butter and jelly again?” is relentless. 

It’s an easy thing for me to offer up sincere words to someone else about this situation. Stuff like, “Give yourself a break because you’re living with something that sucks,” or “Don’t compare your situation to other people’s, they’re all hard,” and “You’re a good mom doing the best you can,” is easy for me to say to anyone, but it’s hard to actually believe any of it for myself.

At first, the guilt ate at me. I let it do its thing, let it make me feel worse than I already did, and cause me to use the reset button more times than should be necessary in a day. Now, I’m handling the guilt. It’s still there, and I know I’ll never get rid of it, but I am at least able to quiet it some when I just can’t muster up the energy to play yet another game of “faces and numbers” with an incomplete deck of playing cards or drink “really fancy water” from a tiny toy cup that may or may not include bits of paper and other mysterious objects.

The only thing I can change about this situation now is my approach to it. I tried resting for weeks on end, but nothing changed. I tried an intense regimen of vitamins, cut out sugar, slept more, worked less, and let dishes pile in the kitchen until it was completely intolerable, but I still ran fevers and felt unwell. I’ve seen a few doctors, had a lot of tests run, am awaiting CT scan results (that will likely show nothing), but nothing has been conclusive, so there is nothing to treat. 

On paper, I’m as healthy as ever. I’m thankful for that, but at this point, it’d be nice to have some sort of problem identified because a problem sometimes has a solution. I’m not great at living in a constant state of uncertainty, but I am getting used to it. And, overall, this is livable. This is manageable. I’m lucky to be able to just continue living my life as I did before. But it hasn’t helped with my depression or anxiety, and the whole brain fog thing that people talk about? That’s infuriating. I almost started a house fire making toast the other day. AND I WAS STANDING RIGHT IN FRONT OF THE TOASTER. 

I digress.

I don’t believe in false positivity. I think it’s ridiculous and inhumane to expect people to look toward the bright side all the time. You get to have low times. You just do. Otherwise, you’re denying yourself reality and getting closer to becoming a robot. Feelings don’t have to be earned—they just are. You don’t have to explain them. You feel how you feel. That’s what I’m learning. 

It’s OK that my heart sinks every time I feel my breathing get heavier. It’s OK that I get irrationally angry about the things I can’t remember right now—I’ll get used to it and figure out how to cope in time. I let myself hope for this to just go away, but I don’t let myself take too much time doing it because every time I get chills, I fall into another little hole of depression, and it’s just not useful.  

Some days, parenting J is hard with the old virus that won’t go away. However, when everything is said and done, I am thankful for his presence because I can’t see myself without him, without a reason to drag myself away from the couch and ignore nausea to go outside in the sun. Without him, I’d just be paralyzed by the uncertainty. With him, I can’t be. 

Because of J, I went sledding when it was below 0 out and forgot I felt shitty for a little while as I flew down a big hill of crunchy snow with just a sheet of plastic between me and the ground. Because of J, I started a family movie night that we all look forward to each week, tried out some (really good) popsicle recipes, found out I am capable of making (really ugly) pinatas and found out I am no longer capable of doing backward somersaults without chiropractic care afterward. Because of J, I keep moving forward instead of being stuck in this weird sort of purgatory where I wait to feel bad again and then while I feel bad, I just wait to feel good. 

I guess I don’t have a lot to offer here on how to improve the parenting experience while sick. Unless you know you’re getting better, it’s kind of impossible to plan to parent better as soon as you’re healthier. At some point, I realized that I can’t wait to be the parent I want to be—the parent I was before this happened—until this all goes away. I have to do what I can right now. 

So, here’s what I suggest if you’re in some sort of similar situation: Rest when you can’t do anything else, suck it up when you can, and be as transparent as appropriate with your child about your situation. J knows sometimes I just can’t do anything but melt into the couch. Sometimes, he pats my head and gives me a blanket. Other times, he pretends he’s “sixty-hundred fast,” running from the other side of the living room until he reaches the couch and violently flings his body onto the space by (or on) my feet. Overall, J’s more patient than I thought he could be. And he gives me more grace about the situation than I ever give myself.

Spring is here, and summer is coming. I’m scared of what that means for my temperature issues. I don’t know if warmer times will mean higher fevers for me or if my random spells of exhaustion will increase when it’s hot outside. But Buckeye Chuck didn’t see his shadow on Feb. 2, muddy footprints cover our floors when we forget to wipe dog feet, and I just spent three hours in the backyard removing poop that used to be buried under snow, so we’re moving forward whether I’m afraid of doing it or not. I can’t help but be excited, really, I’m almost giddy at the possibility—the actual, real possibility—that we might be hugging our friends again by fall, and I’m not going to let the leftovers of this garbage virus keep me from doing it. I might have to do it lying down, but if that’s the way these long-anticipated reunions go, count me in and hand me a drink.

Hang in there, people. We are so close to getting the hell out of this. 

Marissa is the co-author of Urine Luck, but sometimes she writes about things other than bathrooms. Marissa has been writing for the Devil Strip since August of 2015.