My Last Normal Day

What Is Normal, Anyway?

Another Substack writer, Luke O’Neil, has been publishing a series of pieces written by him and some of his writer friends with the theme The Last Normal Day. They are pieces about each writer’s experience around when it hit them that the pandemic was, well, an actual pandemic. What’s different about Covid from other big, black swan type events is that it hit us all in different ways at different times. It wasn’t like 9/11 where it happened suddenly and we all experienced it together. So in today’s piece, I’m exploring what it means for me.

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Photo by USGS

March 11th, 2020 was our third wedding anniversary and the last day I went to the office.

I had been making it a point to walk during my workday to get off my ass and burn some calories. I recruited my colleague Gabe for a walk to get lunch that day. He’s an ultramarathoner in his mid-twenties with curly, unruly brown hair. He bikes to work each day wearing one of those funny biker hats with the short bill and his right pant leg rolled up so it doesn’t get stuck in his bike chain. We grabbed lunch together most weekdays. And more often than not we would go to Mollie Stone’s—an overpriced supermarket less than a mile from the office. In other words, perfect walking distance.

On the walk there we talked about the coronavirus. It was on cable news to an extent, in between the latest Trump craziness, sans the now ubiquitous Covid case numbers and death toll count on the side of the screen. But I had known it was a festering issue for weeks. My Twitter feed was tuned to the world of startups and venture capitalists—people who likened themselves to futurists and experts on exponential growth. That is to say, pandemic whistleblowers shouting warnings within their digital echo chambers.

I was getting increasingly worried about it because my daughter Em has a history of respiratory issues. When she was born, she wasn’t breathing and we spent a month in the NICU. The lack of blood and oxygen damaged her brain and now she has cerebral palsy—a muscle movement disorder. One of the many movements she struggles with—that you and I don’t have to think about—is swallowing. When she had the flu several months earlier, it was so bad that for three nights in a row my wife Allison and I had to trade off holding Em upright so she could sleep without feeling like she was drowning in her own mucus.

“It feels like the virus is all around us,” Gabe said.

“What do you mean?” I asked.

“I don’t know. It just feels like it’s everywhere.”

His words hung there in silence for a few moments as I tried to interpret what he meant. Then it struck me. That’s the thing about a virus—you can’t see it. It’s this imperceptible and opportunistic foe that doesn’t need to mount some sort of sneak attack like a ninja under cover of darkness to infect us. It just latches onto some poor sap, multiplies like crazy, splits up into groups, and some of the viral offspring attack the immune system while the others camp out in some mucus waiting to hitch a ride on a projectile cough or sneeze to infect their next hapless victim.

But we didn’t know that last part then. No, we were more anxious about an unsanitized doorknob than the cheery, chatty checkout clerk less than six feet away from us without a mask on. Plus, I live in Sonoma and work in Sausalito—two idyllic smallish towns in northern California—where there were no deaths yet and the case numbers were less than fifty.

We went into the market and no one was wearing a mask. There was the typical lunchtime rush at the deli counter with people talking and laughing and going about their days without a second thought—before any of us had ever heard of social distancing. Toilet paper was probably even in stock. I really should’ve bought some.

Gabe’s words kept rattling around in my head that evening. The virus really could be anywhere, I thought. I debated whether I should commute to work the next day. We only need an internet connection to get our work done. It shouldn’t be a big deal to work from home until this blows over, right? I know it’s not really my call, but we’re a small team and they know about Em’s issues. They’ll get it. Right?

So at 7:59 am the next morning, March 12th, I sent an email to the team expressing my concerns about the virus and Em. Our CEO agreed it would be best to play it safe and work remotely for at least a few weeks. Maybe it was the Tom Hanks announcement the prior evening that made it feel more real for him. Little did he know we wouldn’t see each other in person again for the foreseeable future.

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It’s getting harder and harder to remember what a normal day feels like since Em’s birth. Life with a toddler who has severe cerebral palsy and is 100% tube fed makes for days that feel like they’re on repeat.

Her meals are on a schedule.

Her meds are on a schedule.

Fuck, I wish her sleep was on a schedule.

It’s been hard to even have a normal conversation with people when I share a story about how tough it is with her.

Some people respond with that tilted head, squinty eyes, and forced frown look and say, "That must be so hard." If it comes from an honest place and doesn’t sound condescending, it’s the least annoying.

You’d think parents would be the most understanding. Yet they often make it about themselves and compare what I say to things their kids do like, "Oh yeah, little Sally had trouble sleeping at that age too." Oh, really? Did you have to give little Sally four different meds in the middle of the night through a feeding tube so she can sleep until at least a somewhat reasonable time in the morning—and by a somewhat reasonable time, you mean 5:00 am—and you hope she doesn't wake up while you're giving her the meds because that means she’ll be awake for at least an hour because her body won’t stop moving even though she’s clearly still tired, which is why you have to give her the meds in the middle of the night in the first place?

The absolute worst response is, "I'm sure she'll figure it out eventually." That is especially infuriating. I want to say, "You obviously know nothing about cerebral palsy" and then lecture them about what it is and how she's going to have it her whole life and how our life is really fucking hard right now. But I know that's not helpful and people are just uncomfortable talking about tough things like that, especially if we're not particularly close (and not just because we're trying to be socially distant right now).

What I really want to hear is, “That really fucking sucks, man. I’m so sorry you’re having to deal with this shit.” Thank you, you’re right, it does suck.

In March 2020, it was starting to hit me that Em was rapidly approaching two years old. Not because of the “terrible twos” phase you hear parents complain about. No, because when she was six months old a pediatric doctor who specializes in disorders like cerebral palsy told us, “We’ve found if a kid can sit up on their own with no support by the time they’re two years old, they have a good chance of being able to walk eventually.”

Are you kidding?! She goes to physical therapy twice a week and occupational therapy once a week. Of course she’ll be able to do that.

Fast forward to March 2020, her second birthday was only three months away and she wasn’t even close to holding her own head up consistently, let alone sitting up on her own.

When we have all this weighing down on us every day, it’s hard to get excited about celebrating days like our anniversary. It feels frivolous. Our energy and time are sapped between juggling Em’s constant need for care, our work schedules, and at least giving some amount of attention to my 11-year-old stepdaughter Sara. So we didn’t do anything special for our anniversary. Maybe we should have. A bit of normalcy within our chaotic life would’ve been nice.

What is normal, anyway?

Normal (adj.): conforming to a standard; usual, typical, or expected

Our life since Em’s birth has been more like the opposite—unusual, atypical, and unexpected. But not in the oh-my-god-your-life-is-so-exciting-I-would-trade-mine-for-yours-in-a-heartbeat type of way. Instead, it was a new normal. Days filled with things no parent ever imagines having to do like attaching a tube to Em’s belly so she can burp or strapping her into a stander device so her leg muscles don’t atrophy from non-use. When we went into quarantine, Allison and I shrugged at each other and thought, welp, just add it to the pile of crap we have to deal with every day already. It meant I wouldn’t need to commute anymore and Sara’s school would need to figure out how to do her classes remotely. That’s about it. Otherwise, our days weren’t all that different. We had already been stuck in a daily Groundhog’s Day loop before March 12th.

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My last normal day was not March 11, 2020. It was June 3rd, 2018—the day before Em was born. Allison, Sara, and I had gone to my parents’ home for dinner that evening. My Dad and I barbequed steak and chicken. My Mom made potatoes. Allison made a salad. We sat around the dinner table and talked while we ate. We just talked, without interruption.

We talked without having to get up to push Em’s meal in her tube.

We talked without having to get up to help Em move her body out of a contorted position.

We talked without having to get up to turn Em back onto her side so she doesn’t feel like she’s choking on her own saliva.

I don’t remember much of what we talked about. But that’s kind of the point, isn’t it?

A normal day isn’t seared with vivid memories.

It might sound hyperbolic, but for us, the stresses induced by Em’s needs and challenges far outweigh the stresses of a global pandemic. It has been more of an annoying detail than anything else. The pesky pandemic. We already had difficulties traveling well before you needed a negative Covid test to do so—like the time her feeding tube came out of her belly in the Las Vegas airport and we had to ride in an ambulance to the ER and extend our trip by a day. Did you know you can breeze through airport security with liquid tube feeding formula if it’s frozen on dry ice? We didn’t either. And did you know the TSA has a mass-spectrometry device for testing liquid medicine? Now you do. 

Em has reoriented and upended any visions we had of a normal life. Before she was born, I would daydream of different moments as she grew up. I could see her taking her first steps. I could picture her chasing her big sister around the house. I could imagine her saying her first word. But all that changed in an instant when she was born.

I don’t want to live a life without Em in it. But it sure would be nice to have a normal day again.

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Thanks for reading all the way to the end, I appreciate it. No pressure, but it would really make my day/week/month if you subscribed. Live a little.

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