There have been so many memes of all the things that went wrong in 2020. Daniel and I joked that being stressed out was normal for us. A pandemic? Wildfires? Murder hornets? We got this. After all, we’d been through a lot in the previous years. Working from home? Been doing that since 2018. Working from home while parenting from home, too? Yep, did that, too. Lost jobs? Twice in 2019. Hoping to avoid hospitals? All the time.
Anyone who has ever been pregnant with their first child probably knows what it’s like to dream about how it will be. Capturing all the special milestones: first steps, first words, first birthdays. Of course, the sleepless nights and endless diapers. But that’s expected, right? How about first surgeries? Second surgeries? Missed milestones? That’s never part of the dream.
At the time, we were living in Arlington, Texas, where we’d moved to after having lived for nearly two decades in Austin, for Daniel to pursue an MFA in film. But we were blindsided by Lucia’s health issues. It was too much for us to handle on our own without family, or so we thought. Should we move to Los Angeles? Back to Austin? Daniel quit grad school at UT Arlington, I quit my job at Amphibian Stage Productions, and we ended up in San Antonio on a whim. (We have a self-help book in the works: “Don’t Make Big Decisions Right After a Traumatic Experience”.)
A few months after the move, as we recovered from her first surgery, she was diagnosed with unilateral coronal craniosynostosis (premature fusion of one of the sutures in her skull, occurring in about 1/2,000-3,000 live births). I then started a remote job doing digital strategy with an electoral startup, and Daniel became a stay-at-home dad. It wasn’t how we planned it, but that’s how it ended up. We spent that spring and summer making many trips to and from Houston for Lucia’s specialist visits at Texas Children’s Hospital: craniofacial surgeon, neurosurgeon, ENT, urologist, and more. By then, I’d collected business cards from at least a dozen different specialists. The stack grew. (Spoiler: it continues to grow.)
September of 2018, she had her second surgery. It was a three-in-one: fronto-orbital advancement and cranial vault reconstruction (for the craniosynostosis) and supraglottoplasty (for the laryngomalacia). I still don’t have the words to describe what I felt. By then, she was old enough to know she was being taken away from us to be wheeled away to the operating room. I don’t remember if she cried (I think she did), but my eyes filled up with tears as she disappeared down the hall. I didn’t see her again until hours after the surgery. Head bandaged up to look like a little hat with teddy bear ears, eyes swollen shut, wires and tubes coming out of her small body, every which way.
I’d taken a week of vacation from work to be at the hospital, and then I returned right back to my job, diving into midterm elections.
If her first surgery didn’t bring me to my knees, her second surgery definitely did. By the time midterm elections rolled around, I was having night sweats, heart palpitations, eye twitches, and insomnia. In our own special kind of quarantine, rarely leaving our apartment at The Kennedy except for doctor visits or occasional burger nights out, we had little contact with friends or family. Although somewhere during our disjointed time in San Antonio, I managed to play music again. I started going to the gypsy jazz jams at The Cove and found my way into a little jug band tribe, where I first gathered the courage to sing.
But we needed a change—as a family. We explored all the options, charting them out on a white board. We researched. Arrows kept pointing to Durham, North Carolina.
So we moved again, for the third year in a row, this time halfway across the country. With major surgeries behind us, we felt we were finally entering a calm period. I then lost my job with the startup agency, and Daniel was admitted to the folklore master’s program at UNC. Summer of 2019, our relationship suffered from all the trauma upon trauma we’d been through together, on top of whatever childhood traumas we’d dragged into adulthood. I began a new startup job in the fall and Daniel braced for a gut-wrenching first semester of graduate school. Just before the holidays, I lost that job, too.
We entered 2020 exhausted, shell-shocked, and full of anguish. But wait! We’d made it this far. Surely a pandemic couldn’t break us. But wait! Not just a pandemic. This year, Lucia was diagnosed with ASD (autism spectrum disorder) and a KANSL 1 gene mutation, with a possible diagnosis of Koolen-de Vries syndrome. I mean, what’s a year for us without a few more rare and random medical diagnoses?
I stumbled my way through several part-time jobs until I found my current job with Poder NC Action. Although I had to put the Durham Jug Band Project on hiatus, I’ve made so many musical breakthroughs during quarantine. I’m dreaming up bigger things and re-strengthening my connection to my Mexican roots. Daniel let his hair grow out into a fro, and he took a life-changing performance course that has helped him start finding his voice. Lucia started a new preschool where she’s made her first best friend. True friendships continued to blossom in 2020…both old friends and new friends. Zoom and social media, despite all its negative trappings, helped us cut through space and time.
I won’t venture to guess what 2021 has in store for us, because things never quite turn out the way we plan. Still, we dream! Small dreams and big dreams. The three of us—Daniel, Lucia, and I—have stories to write, instruments to learn, and songs to sing and dance to. Books to read, movies to watch. Bigger slides to master, taller hurdles to jump over, and more intricate Lego houses to build. A graduate program to successfully finish, and a job to continue flourishing in professionally, personally, and creatively. Exploring more of North Carolina, even if it’s just a day drive to see the sights and picnic by the side of the road. Baking different types of muffins and experimenting with new kinds of homemade popsicles. Growing things in pots when the weather warms up. House hunting. Getting ready for pre-K. Seeing what opportunities are out there post-graduate school.
Sure, it all gets harder as you get older. But we’ve been pretty good at re-inventing how to live our lives, drifting outside the lines, healing from trauma. We haven’t followed the guidebook so far! So cheers to 2021…new challenges, new adventures, and continuing to spread our wings.