My Pandemic Lesson

February 22

We celebrate my son's eighth birthday. To my delight and surprise, it goes off without a hitch. Usually, weeks of anxiety precede his birthdays. Inevitably, great expectations turn to disappointment and anger when things don't go exactly as planned. Not infrequently, parties end with his screaming at his friends, stomping upstairs, slamming his door as I apologize and usher bewildered parents out of the house. 

Those nights, there are tears at bedtime. “Why can't things ever go right?” he'll ask, “Why can't I ever be happy?”

I'll hug him and say, “You want things to be perfect and life is almost never perfect. We have to try to be happy in spite of life's imperfections.” 

For an autistic kid with an alphabet soup of co-morbid diagnoses (Sensory Processing Disorder, Generalized Anxiety Disorder, and Pathological Demand Avoidance), this is easier said than done. My friends offer playdates to give me a break, but I don't want to risk his having a meltdown with someone else. I worry he'll insult or hurt them, that things might be irrevocably damaged. We get by, mostly by staying home, immersed in his interests, keeping feathers unruffled. I squeeze in occasional evenings out to remind me there is life beyond Star Wars and Harry Potter. 

His eighth birthday is different. He plays the gracious host for his American History party, emceeing historical trivia, showing off his expertise about presidents, asking each guest, in turn, what they would prioritize if they were president. Climate change comes up quite a bit; homelessness; racial equality; “no homework!” Nobody mentions a “global health crisis.”

Huddled in small groups, trading bites of homemade pizza, we talk about our plans for spring hiking trips, summer at the shore, and performing arts camp. The kids create a short play, take silly selfies with Abe Lincoln hats, and giggle through red, white, and blue frosting smiles. 

As our friends leave, parents tell Ellias he was an excellent host, and then in a hushed aside to me, “Really, he did so great. He seems to be doing much better.”

That is the last time I remember things feeling normal.

March 21

Philadelphia is on lock-down. Ellias is worried. He wants to know how long we have to do this. “Why are grownups so stupid? And why is everyone so hung up on this dumb virus?”

I take all of his stuffed animals off the shelf. We play.

“Miss Piggy has a playdate with Gonzo, but she doesn't know she has the virus.”

“Uh oh! Now Gonzo has it!”
“Yeah, but he doesn't know it either 'cause he feels fine. So the next day – la la la – he goes over to Kermit's house for a light saber battle. Whack! Whack! Ahhh! Gonzo's down. Oh, time to go home because Kermit is going to visit his grandpa at the nursing home.”

“Oh right, but Kermit's sick now, isn't he?”

“Well, not super sick. Like, he might have to spend a day or two in bed. But when Kermit's grandpa gets it, he has to go to the hospital because he can't breathe. And now a bunch of people in the nursing home are sick and they all have to go to the hospital, but – uh oh! No more room! Sorry, Fozzy's uncle, no ventilator for you. You'll have to die. And all because Miss Piggy and Gonzo wanted to have a playdate.”

“Kermit's grandpa” becomes my new shorthand for every time we can't do something because of COVID-19.

April 2

At first, it isn't too bad. We're used to homeschooling, and usually spend lots of time reading and watching documentaries on Netflix. We celebrate my daughter Aayla's second birthday over Zoom. 

We invite her two-year-old friends and I leave goody bags on their front steps. Uncle Dave and Cousin Vera join. Nana can't hear us at first over Zoom. When Elsa arrives and asks everyone to mute themselves, Grandma and Grandpa are oblivious. She sings “Do You Want to Build a Snowman” as my parents audibly discuss why their screen keeps freezing. 

Ellias and I roll our eyes at each other and snicker. Zoom hangs up on everyone halfway through “Let It Go” and I hustle to send out new invites to finish the call. It's not perfect, but Aayla is thrilled. I think, “If we have to keep doing this until summer, we'll be okay.” 

May 19

We're not. 

Ellias's initial anxiety and resentment of the restrictions gradually grow into depression and withdrawal, and then into rage and aggression. He wakes up angry, avoids us most of the day, screams if we ask a question, and throws things if he doesn't get his way. He refuses to go to bed, stays up all night, sleeps only when he can't keep his eyes open any longer, then wakes up irate. I become his personal punching bag, covered in scratches and bruises. He hits, kicks, claws, pinches, pulls my hair. 

One day, I take the kids to the park for a picnic. Ellias fumes, “The park is so boring without the playground.” When I ask him to enjoy being outside in nice weather, he punches me in the face. We are in limbo, waiting for a new psychiatrist. I am exhausted and depressed. I fantasize about running away and never coming back.

June 26

To: Lauren, Sarah, Chris, Bethany, Hannah, Kate, Cora

Re: losing it

It has been one shitty day, y'all. Ellias is off the rails. He's alternating between gleefully tormenting me in any way he can think of and sobbing with regret, telling me he's so sad and lonely. He refused to go to bed last night and woke me up every fifteen minutes or so starting at 2:30. At 5:30 I told him in desperation that sleep deprivation is a form of torture used by terrorists. I removed two pairs of scissors, a rolling pin, and a meat hammer from his room so he couldn't use them for whatever purpose he had in mind, and wondered if I should call crisis intervention before one of us committed homicide. I hang on by a thread.

Hannah: OMG Briana. I have thought and worried about you. It sounds like E needs some serious help and you need a serious break. Can you get away for a while?

Cora: Is there any way we could help you? What does your heart need? What do you need?

July 6

For the first time in my life, I don't dismiss their offers. I tell them what I need: a break from my kids, help with housework, a therapist, and my friends.

Within a week, Sarah pays for a cleaner to deep clean my house from top to bottom. She spends three hours on the first visit. My kitchen looks like it belongs in a different house, with a different family—maybe one from a toothpaste commercial who have sparkling white teeth to match—instead of my grimy children with permanently brown fingernails and knotted hair. I walk into the kitchen just to breathe in its lemony scent.

Multiple gift cards for GrubHub arrive in my email. My husband and I eat takeout shrimp tacos and chicken pad Thai instead of something from the freezer aisle for the first time in months. The kids have their usual mac and cheese, but Jake and I relish the flavor of fresh cilantro.

Chris sends me a list of therapists who specialize in coaching parents of kids with special needs. Bethany sets up some socially distanced playdates in her yard and watches my kids while I make phone calls. Lauren schedules a Zoom chat after bedtime. Seeing her face brings tears to my eyes.  

August 4

I take Ellias to meet a new psychiatrist. Ellias bristles, “You don't really care about me. You just want to make money. Besides, nothing helps.” He's tired of sitting in offices, listening to people talk about him. He tears off his mask and the ear loop breaks. I can't fix it. We go home with a new prescription for an anti-psychotic.

September 30

The medication helps. Ellias sleeps through the night. He smiles again. We listen to a podcast together about the soundtrack of Star Wars. Aayla can recognize the main theme, and knows it's by John Williams, which delights her brother. “You're a musical genius,” he proclaims, grinning and hugging her. Relief and gratitude wash over me. I text my best friend and make a date to visit her in October.

October 10

It's the first time I've left the house for more than a grocery store run since the lock-down started.  We spend a relaxed afternoon on Virginia's deck discussing our new pandemic houseplant addiction, the election, the protests. Her neighbor in Lancaster has a larger-than-life Trump cutout on her lawn. My neighbors in South Philly stand guard with baseball bats to “protect” the Christopher Columbus statue in our park. We stay up late, munching potato chips and marveling at the craziness of the times, laughing at memories of our middle school days, at how we've changed, and how we haven't.

October 11

I wake up to a voicemail message from my twenty-one-year-old niece: “Briana, it's Katie. Papayay's in the hospital. He just came out of emergency brain surgery and he's not doing good at all. I mean, it's pretty bad. We're all going to the hospital now to decide what to do, but it's, like, really bad. You should come if you get the message.” 

And then a second message: “So the doctors told us he had a massive brain bleed and they did surgery right away to stop it, but he isn't responsive. They said he has very little brain activity and they don't think it's going to get better. We decided to give it twenty-four hours because you never know what can happen, but, yeah, it's bad. It's really bad.”

I spend the rest of my “getaway” weekend, calling my stepdad's faraway kids, telling them they need to come say goodbye, Googling “cremation costs,” making a list of things to do when someone dies. 

I take my mom to the hospital, where we meet my stepsister, Cathy. We sit across the room from each other in masks, silently watching the ventilator push air in and out of his otherwise still body. They have shaved his head for surgery. He has a Frankenstein-like scar. 

Cathy strokes his head and tells him, with a little chuckle, that he's not looking too glamorous. It's awkward. We haven't seen Cathy in a decade. I don't want to laugh. I don't want to touch the person in the bed who does not look like my dad. I don't want to make small talk with my estranged stepsister or eavesdrop on my mother's quiet pleadings for her husband to wake. 

I sit at the edge of the room, marking the time by the quiet whoosh of the ventilator. 

We go back to my mom's house where my nieces frantically clean. “So, this is what it takes to get someone else to clean around here?” my dad would have said.

October 12

On Monday, they disconnect the ventilator. We are allowed to go into his room two at a time. We have ten minutes for his wife, five kids, and six grandchildren to say goodbye. In a time when most hospitals allow no visitors at all, I know we are lucky; but sitting in the waiting room, hearing the sobs of my nieces down the hall as they mourn the only father they've ever had, not being able to hold them, is excruciating.  

My mom is dazed. She doesn't say much, except to wonder what will happen to her, how she'll be able to pay for it all. The social worker at the hospital tells me to set up a GoFundMe page. I look at her skeptically, knowing nobody in our social network has money to spare. 

November 3

Election Day persists. During the pandemic, my dad, a dedicated lifelong Republican, completely reversed his political views. I am incensed to discover that his one and only democratic vote via mail-in ballot will not be counted. It feels like our family's recovery hinges on the outcome of the election. I think, “At least he didn't die a Republican,” as I wait for the announcement of the winner that does not come. 

In three weeks we collected nearly $6,000 in donations, not just from our friends, but from friends of friends and perfect strangers who wanted to help. In the chaos of the last weeks, I forgot to do anything for my husband's birthday. I ask my Buy Nothing Facebook group for last-minute assistance. A neighbor gives me a brand-new tent. I pick up homemade samosas from someone else. I realize lots of people will help, if I ask. I will start asking.

December 13

During the wait to get my mother in-home nursing care, I split my time between caring for my family in Philadelphia and caring for my mom in Lancaster, two hours away. Aayla stays with me and Ellias stays with Jake. It means I'm missing most of Advent, a time Ellias looks forward to all year. It's a tradition to do something special together each day.

I reach out again to my Buy Nothing group and my neighbors organize an “elf” sign-up sheet. Within hours, this community plans for surprises to be delivered to my son every day from now until Christmas. They volunteer to bring him pre-measured cookie ingredients, holiday bubble bath, Christmas selfie props, homemade hot chocolate bombs, ornaments to paint, and even a digital holiday game we can play together over Zoom.

I happen to be home for the weekend because today is my birthday. Jake and I fight. We are beyond stressed. Money is tight; our house is a mess; neither of us feel like we can get anything done. Jake yells at me, “We should get divorced. I hate our life.” I flee to the bedroom sobbing. He apologizes. 

The doorbell rings and I find a neighbor, a woman I have never met before, standing at a distance and pointing to my step where she has left a beautiful, homemade, chocolate peanut butter cake. I want to hug her, but I just wave and sniffle, “Thank you, thank you. . .”

January 3

We start a subscription to Universal Yums. I am doubtful Ellias will try much, but he surprises me by eating every single thing in the box. His favorite is not the chocolate, but the truffle oil potato chips, a food I cannot imagine he would have eaten six months ago. Jake and I congratulate him, and he beams. It's a wonderful family night, listening to Italian music, exploring on Ellias's new “Smart Globe,” and sharing unusual snacks. 

It is a new year. We make a family vision board and hang it in the dining room. 

February 25

We celebrate Ellias's ninth birthday at the park. As usual, he has jitters. We invite only his best friend's family. I make Han Solo in carbonite Jello and “Obi-Wan Cannoli” cake. The weather feels like early spring. We sip blue bantha milk as the kids have light saber duels, shoot Nerf guns at storm troopers, and play Star Wars “Would You Rather?” 

In the car on the way home, Ellias proclaims, “I think it went great. And really, all the credit goes to you, Mommy. Thanks for making such a fun party!” 

March 17

I don't usually celebrate St. Patrick's Day. But between getting our stimulus payment and my first vaccine, I feel the luck of the Irish. We order fish 'n chips and turn on Riverdance.

As Aayla's next birthday approaches, it occurs to me that she has spent a third of her short life in quarantine. When she clings to me, I wonder if the usual toddler separation anxiety will shift into a lifelong social anxiety disorder simply because of the isolation.

Since the start of this pandemic, though, people have come through for me in ways I could never have imagined. I write this from a neighbor's home, one of several who offered me quiet space to work when I asked. Another neighbor has offered to make cupcakes for Aayla's birthday while I help my mom with her move. Our community furnished her new apartment. I want to teach my kids what I didn't learn until this year, what it took a pandemic to teach me: we don't have to get by on our own.

Briana Feinberg is a stay-at-home mom and a nonprofit educator. She lives in Philadelphia with her husband and two children. She and the friends mentioned in this piece built the most supportive and encouraging parenting community ever when they opened the South Philadelphia Cooperative Playschool in 2015. In non-COVID times, Briana enjoys teaching nature classes for families, attending live theater, and traveling. This year, she has explored the art of flash writing, developing Zoom lessons on how families can go greener, and preaching the gospel of the Buy Nothing Project to all.