Illustration by Christine Wei
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I have the words “be here now” tattooed on my wrist. I got it when I was 19, backpacking through Guatemala, doing meditation retreats, reading about Buddhism. The tattoo was proof to the world that I was the kind of person who lived in the present moment.
Thirteen years later, these words would be proof of my radical failure.
My daughter Bree was born with Trisomy 13, a chromosomal condition severe enough that doctors have described it with a phrase that sounds more like an error message than a prognosis: incompatible with life. We learned about her condition during my wife’s pregnancy. The medical literature told us our daughter would likely die within days of birth, if she made it that far. So I did what any thoughtful, present, spiritually tattooed father would do: I Googled infant coffin sizes. I wrote her eulogy in my head. I grieved her before she arrived, which is another way of saying I left her before I ever held her.
Swipe right if you’re interested in meeting my husband, who likely will be widowed by spring
Then she was born. She entered the world covered in goop with a real, “Look world, I exist” cry. She breathed on her own. She was immediately transferred up to the NICU at Mount Sinai in Toronto, and suddenly, after months of preparing for her death, we were now parents of a living baby, surrounded by machines and monitors, with no script for what came next.
I wish I could tell you I rose to the occasion. That something primal kicked in and I became the father my daughter needed. Instead, I spent most of it in the corner of her room, refreshing Instagram.
The algorithm didn’t know my daughter was dying. It had been tracking me for months through the pregnancy searches, the baby-related keywords, and it had decided I was a typical new parent having a typical new baby. So it kept serving me ads for milestone blankets (Don’t let the newborn days slip away!) and handmade nursery signs (It won’t be their last room, but it will always be their first!). Plump-cheeked babies blinking up at the camera, wireless, unbroken. I wanted to throw my phone through the window. Instead, I swiped up and kept scrolling.
I read Reddit threads on complex-care parenting instead of actually being a parent. I scrolled through Facebook comments on the posts we’d made to our private group for friends and family, counting the heart emojis like digital sympathy was a form of medicine.
My phone buzzed constantly. Texts from family asking for updates. I’d type “she’s doing great!!” with two exclamation points while watching her monitors flash yellow.
Rachael, my partner, was different. She held Bree skin-to-skin, learned the feeding schedules, interrogated the doctors, took notes. She was there in a way I couldn’t access. I watched her whisper to our daughter, lips pressed against that small skull and I stayed in the recliner, thumb moving across glass, numbing myself with the scroll out of fear and avoidance.
Long-distance calls with my parents can be about nothing, but they’re also about everything
On the fourth night, my phone died.
The charger was plugged into the wall behind my chair, feet away. But Bree was asleep on my chest, wires trailing from her body to the monitors, a syringe of breast milk dripping through an NG tube over my shoulder. If I moved, something would pull or disconnect or alarm. So I sat there, phoneless. Unplugged from the escape hatch I’d been using to avoid Bree’s and my life.
I looked at her. Actually looked.
Her eyelashes were longer than I’d realized. Dark, curved, resting against her cheeks. She has a sixth finger fused to her pinky, like two candles melted together. I traced it with my eyes, this part of her the doctors had called an abnormality but that seemed, in the dim light, like just another way a hand could be designed. The soft spot on her skull pulsed faintly with each heartbeat. She made a small sound, just a note, like she was testing what her voice could do.
I started to sing. “Twinkle, twinkle, little Bree. How I wonder who you’ll be.”
It was the first time I’d been fully present with her since she was born.
Bree is four now. She wasn’t supposed to see her first birthday. She can’t walk or talk and her vision is limited, but you feel it through her experiences of mundane moments, like a laugh when her sister talks to her, a smile when the song You Are My Sunshine kicks in, or that deep concentration as a ray of sun glistens on her face. She is here, in the very literal sense, despite everything the statistics promised. She is also here in the way my “be here now” tattoo aspires to.
The tattoo is faded now, the letters blurring at the edges. I look at it sometimes and think about that kid in Guatemala who believed presence was something you could earn through meditation and ink. My daughter has taught me that presence is a choice you make, over and over, to stop reaching for the escape hatch and sit with what’s in front of you. Even when what’s in front of you is terrifying, when your phone is right there, and the person you are madly in love with might not stay.
Robin Koczerginski lives in Toronto.