When my Baby Died, I Realized There was No Field Guide for Grief

You’ve got to get up and make breakfast.

You’ll lie there for a while resisting, thinking all kinds of insensible things people think when they get up to make breakfast after somebody dies. Especially after a child dies. Like how you don’t deserve to eat. Like how your jerk body just carries on, dumb and deaf and pumping like the meat suit it is, taking stuff in and processing it and making energy and pushing it out. Why does one soft machine work when another doesn’t? It’ll make you stare at a bag of bagels, sighing, for longer than you should.

A few words about sighing. This is important.

If crying is the body-wracking shrieks of a three-year-old separated from a bookstore train set, I didn’t cry every day. If crying is a face dripping silently while staring into space for a minute or an hour, then maybe it was every day, and for quite some time. This is how the bereaved follow their love. All other ways are closed. And as soon as we ease away from the sighing and crying and staring into space—who knows when—we’ll mourn the mourning.

In trauma, the concrete that separates regular life from golden tickets and glass elevators and giant peaches thins to a veil. Through it, we can see and hear and sense the other side. When you cling to it, you’re not wallowing. You are integrating.

Grief is not an illness, a diagnosis, or a constant state. Grief is the bruise after a blow. Blackening is normal. Swelling is normal. Then a rotten sort of putrid. Then it sinks beneath the skin, failing to mark you anymore, failing to excuse you, returning you to the masses before you’re ready. You’ll miss the black and blue because as soon as it fades, you go from “honoring” to—as your onlookers might say— “dwelling,” that damnable word.

The losses that can follow loss—those of identity, personality, spark, ambition, humor, sex, focus, optimism, appetite, intimacy, faith, partnership, friendship, self-love, unconditional acceptance—feel irrevocable. If only we could lighten ourselves of the burden of counting what’s fair and what’s not. But we can’t. It’s the great cosmic prank: our inability to stop counting is the very missing link between us and our simian cousins. All the gods know it.

***

The pamphlet was a piece of paper folded twice, a photocopy of a photocopy. On the front was a line drawing of a woman in bell bottoms and a turtleneck sweater, her head in her hands. The title read, Booklet of Normal Feelings.

At one of the hospital’s fruit-punch-and-cheese support groups for parents in the NICU, a social worker had appraised my glassy eyes. Reaching for the melon balls with one hand, she pushed the pamphlet across the table with the other.

“You should read this.”

I looked at it with a frozen face as the parents around me chatted nervously about jaundice and reflux. The room hung there, a study of two-bite muffins and Styrofoam cups. I stumbled out into the hall and she followed me.

“You forgot your bag.” She pressed it into my arms. “Kate, I think we should talk about what you might need, you know, to get through this.”

“Okay,” I replied. She gave me a ten-dollar gas coupon. Then she walked away.

They provide the diagnostics, the pharmaceutical goo, the doctors trained in medical science as well as the compassionate art of saying We just have no way of knowing. That’s a big mandate. Often too big to tend to the emotional shrapnel for families as well. The hospital must triage, assigning degrees of urgency, and my feelings as the parent of a gravely injured or dying child are way down the list. Even if they weren’t, how might we better initiate new arrivals to this alien world? Is it even possible to mitigate the shock of it? How might we better protect and honor parents in the face of do-not-resuscitate orders for their baby?

We, the suffering and the bereaved, can’t possibly be cut loose in a world where people still run for the bus like it matters. We can’t possibly.

But we are.

***

Pictures showed what I couldn’t see in front of me when it was happening. He bloomed as he graduated from the ventilator, almost plump in his stability. But a few days later, his head began to swell. On top of the flood in my womb, oxygen deprivation at birth, brain surgery, and heart surgery, he had developed hydrocephalus—water on the brain.

Two weeks later, poring through the images, I could see with the same brutal clarity what the nurses must have seen. His face was a grimace. The shape of his head, the pallor of his skin...he was lost. Even as they wheeled him away for the surgery that hoped to save what was left of his brain, I hadn’t considered the possibility he would take a turn. I was placated by the fact that he looked so much better than he had at birth. I dared to hope he may not only survive but be unscathed. Almost like a healthy baby.

Delusion can be self-protection. We walk beside our children and hold their hands as long as we’re able, even when we despair at their path. Especially then.

***

You might worry your heart is full of holes and that a heart full of holes can’t function properly. Now think of all the things that do exactly what they are meant to do thanks to their holes, large or microscopic: sponges, soufflés, the foam inside life jackets. Your holes are buoyant. So are mine. Your holes make you lighter than you look.

***

In the odd space between Liam’s death and Ben’s release, I sat one night at home, pumping breast milk for the next day’s hospital shift as Evan’s two-year-old voice echoed in the gurgling empty of his bath.

“I show mama!” He careened around the corner. “MAMA!”

He leaped into my lap and threw his pudgy arms around my neck, steaming-fresh. “I ha’ BUSY DAY! I see FWIENDS. I pway in a-pwaygwound, a-big TWAINS! A-dis way, mama. I a-jammies. Cuddle, pweeze!”

“I can’t, love. Soon! Mama has to make baby food.” Evan curled up and watched, his eyes fixed on the drip-drip-drip.

“Mama make a-boobie milk,” he declared. “Aah . . . [as] a-dis one for Ben, a-dis one for Leee-am.”

I decided it may as well be then.

“Evan love, Liam doesn’t need mama’s milk anymore. He’s a star now, watching over you. He’s okay, he’s a happy baby now. But he won’t be with us.”

He scrunched his forehead.

“No, mama. Dis one’s for Leee-am. Dat one’s for Ben. Dis one’s for Leee-am. Leee-am! Thomas. James. Skarloey.”

He huffed off importantly to arrange his trains into parking lots. From the other room came a crash-bang as a basket was overturned.

“Aah! Misser Toppem Hat. Liam. Twubblesome twucks. GORDON!”

Gravity is randomly selective. The bare bum and wet neck of a warm two-year-old can fend off the pull for a time. Lots of other things can too. A cast iron skillet full of tomatoey French lentils simmered with marsala wine, the stirring of which gives you a twenty-four-minute reprieve from actively remembering your baby is gone. For a moment, things will be okay. You’ve made some nice supper. Gravity ambles off elsewhere to affect the mass of someone else.

***

People at a loss for words might say stuff like this to you: Your story makes me realize how easy we’ve got it / how insignificant my problems are / how lucky I am. I think my life is so hard but then I think of you.

You’ll imagine taking them by the shoulders, pulling them close, and kneeing them in the groin. Wait. No. A falling anvil! A flaming bag of dog shit! A trip wire and down they go, and you have a SLOW-MOTION REPLAY button and you hit it again and again.

They’ll say, Thank you for reminding me to hug all my favorite people a little tighter today, because I can!

You’ll say, You’re welcome.

You’ll stew about it for a few days. Then you’ll soften up and let it go because you’ll realize you might have once been, at best, at a loss for words. Or at worst, the justified recipient of someone else’s fantasy flaming bag of dog shit. We are a clumsy bunch when it comes to tragedy, especially in the West. We don’t understand it at all until we understand it too much.

Before Liam, I didn’t know how perilous and unlikely it was to be alive. I knew it, but I didn’t. His death was a total breakdown of every assumption I didn’t know I’d been assuming. What is good? What is love? Why everything? I had felt intentional in my life to that point, but I’d been bumbling along eating crackers, futzing over the way my belly stuck out. The conundrums we inherit as sentient creatures... I thought I knew. But I didn’t. Not to say you are unenlightened until you suffer deep pain. But that’s how it was for me.

As the only animals who know we will die, how should we live? This is the sweet and futile agony. It’s where every inner monologue comes from. We obsess over happiness, completeness, and chemicals that gently cover gray hair. We buy heart-shaped rocks painted with Stand in Your Truth and Brave Is Free. Somehow, despite knowing loss will happen to us—and that our own ashes will someday be inside an urn on the lap of somebody who loved us—it’s still incomprehensible.

Yet here we are. Still bumbling, but awake. Hello, you.

In a dream you and I are wandering the streets. We’ve got black scarves over our faces and fistfuls of heart-shaped rocks. We are hunting for unbroken glass.

Excerpted from Notes for the Everlost: A Field Guide to Grief, by Kate Inglis, published by Shambhala Publications. 

Read more: My only child died, but I'll always be a mother This therapy helps grieving parents process child loss and miscarriage