by Kate Inglis
You are not broken, and you are not failing. Neither am I.
5. Happiness can’t be manufactured.
Harmony can. Parent yourself to protect it.
Imagine a child who is urgently upset, tired, hungry, sick, or injured. As a parent or caregiver, you would step in: This needs to be taken care of and it needs to be taken care of now. You’d act with empathy and immediacy, without shaming. You would address whatever lapse or shortfall was unaddressed. Food. Sleep. A Band-Aid. You’d make it better. Are you tantrumming with upset? Losing your mind with exhaustion? Afraid of the dark? Parent yourself.
Grief is most intolerable when there’s a gap between what you need and what you’re getting. The gap is the discord in which minds and relationships fester. The gap is created when you’re too afraid—too committed to the illusion of wholeness—to say:
I need that day on my own.
I need to go back to that place.
I need help / antidepressants / therapy / a hot beach.
It’s time to do something with those ashes.
Don’t touch that urn.
Take a day off, a week off, a month. Give yourself friends or solitude, conversation or silence. Protect your needs whether it’s three months out, six months, one year, or five. You have total agency over your well-being. Keep yourself away from poison. Give bullies a wide berth. Parent yourself: simply make sure you, a beloved child, have your needs met.
We don’t judge a river for overflowing or slowing to a trickle. We consider the conditions: pressure fronts, storms, drought, rain, wind. None of it is abnormal. It is the raucous, relentless, and sometimes unscrupulous nature of nature. It does what it must. But when people start messing with a river—trying to divert it, alter its flow, use it for other purposes, change its course—it becomes a disaster. Nature, when protected and cared for and allowed to be what it is, can be perfectly harmonious as long as we don’t interfere with our agenda. So can grief.
Think of what you’d categorize as your worst moments: when you drank too much, overate, or self-medicated in a way you knew was not good for you. Think of when you said or did something you regretted or didn’t sleep for a week or dropped the ball in your career or curled up in a dark room wanting nothing more than just that. In those moments we bristle at grief and hate ourselves for failing at it. It’s a double-decker sandwich of misery. You are already dealing with empty arms, a flawed body, spiritual crises, relationship crises, identity distortions, sexual disconnects, survivor’s guilt, and social isolation. This is the baseline after a baby dies. This is plenty. Don’t add to it by being angry at yourself for not putting on a more palatable show.
There was never anything wrong with you. There still isn’t. The next day dawns. Your worst is not who you are. You are not defined by your despair. Your worst was a tantrum, the most justified of all. Your parent—the parent of you, within you—loves you anyway, always, unconditionally.
* * *
Most human beings acquire the truth fragment by fragment, on a small scale, by successive developments, cellularly, like a laborious mosaic. There are very few who receive it, complete and staggering, by instant illumination.
—ANAÏS NIN, The Diary of Anais Nin, vol. 3
In the last moments, you looked at your baby and thought the same thing I did:
Please live. I don’t mind if you dye your hair Kool-Aid blue. I don’t mind if everything you believe turns out to be different from what I believe. I don’t care who you love or how you love, as long as you find some and give some. I don’t mind what you’re into, as long as you’re safe. I want to see the things that make you smile. I want you to have the chance to be. To be happy. Please live.
Then your baby died, like mine, and you received the most terrible and most effective lesson in unconditional love. You might have thought you knew what it was before, but you didn’t. Not properly. Now you do.
CHAPTER TWO
As Much as I Can Remember
The Story of Liam and Ben
April 23, 2007. Last night I dreamed my babies were born too soon. They were from another planet. They had acorns for knees and elastic legs and didn’t cry. I stared at them and they stared at me with the giant, almond-shaped eyes widely reported by abductees. They knew everything there is to know. Then I woke up.
THE TWIN BABIES of my pregnant dreams were science fiction, with fluorescent lights and scrubbing sinks. Days after the dream, after I woke up, shaken, and wrote it down, it unfolded just like that.
* * *
The ultrasound technician had diagnosed me as having a particular form of twinning that carried a risk: “They’re in two uterine sacs, which is good,” she said. “But they share one placenta. We’ll scan you weekly to make sure one baby doesn’t start getting bigger than the other.”
“What happens if that happens?” I asked.
“Oh, you don’t have to worry about that.”
“What’s it called?”
“Twin-to-twin transfusion syndrome,” she said.
In nonmedical terms, it’s a gravity problem. The top baby drains and the bottom baby floods, with a pressure that overwhelms and damages major organs. But the phenomenon usually happens in increments over a series of months. For us, it was a torrent that went from perfect calm to its fatal worst inside of a couple of days. I hobbled around the backyard cradling my belly like a medicine ball, berating myself for not being able to handle a multiple pregnancy, convinced I couldn’t possibly get any bigger. I paced. I tried to sleep and couldn’t.
Be tougher than this. You still have three months to go.
I can’t do this for three more months. I can’t get any bigger. My stomach is going to explode.
It did. My placenta abrupted, sending me into labor at twenty-seven weeks. The medical resident frowned, listening, confirming only one heartbeat. Then the room turned upside-down. The sprint on the gurney. I was spun into place, strapped down. Make a fist. My belly, rock hard with catastrophic fluid, was set upon by a splash of antiseptic. A tube was shoved between my legs and rolling machines crashed into walls. Get the neonatal team in here, stat! A mask fell over my face, another urgent voice in my ear. Four deep breaths, give us four deep breaths, then you’ll feel cold…then it all went black. Then blinding light again, immediately, it seemed. I wondered if there had been some mistake. All sound in the operating room was muffled, like being underwater. I couldn’t speak and couldn’t see my babies. While I had been out, the doctor had peeled off my skin like a sausage casing from scalp to toes. He must have. He said Nurse, blow torch and fire-carved black swirls all over my insides like thousand-year petrogylphs. Woman-giver; thunder; smashed nest; broken birds. Then he put me back together, but from the moment I opened my eyes again I could feel grit and scar tissue under my skin. Ten years later, I still can.
A few hours after it happened, a neonatologist sat at my bedside.
One is stable. Blood transfusions
But the other
Kidneys, lungs, heart
Brain severely compromised
Fourth-degree bilateral bleed
Coma-like state
Do not resuscitate
Sign this
Kate
Kate
She is not hearing me
Can somebody please call the nurse
Kate
Get her into a wheelchair
It’s the morphine
Kate
* * *
Through the halls of the NICU my wheelchair passed machines that fed bloodstreams, pumped hearts, and filled lungs. Tangles of tubes and wires encased plastic boxes swarming with masked people in paper slippers. They wheeled me in between two incubators.
They are out
They are out
I am empty
They should
not be out
They are out
I approached them as I would a live bomb.
Oh my god
Oh god no
I’m so sorry
It felt like a decision. I couldn’t help it.
I hate you, body. I will hate you forever.
* * *
“…Severe cerebral palsy. And he’s unlikely to ever see or walk, and there will be seizures and lifelong diapers and repeated surgeries.”
The doctor gestured to what must be apparent, like clouds indicative of storm, and I blinked stupidly.
“See these patches of white?” he dragged his finger over the screen. “That’s damaged tissue, if there’s anything there at all. There’s not much functional brain left.”
I slumped in the chair. He continued.
“But he’s here, isn’t he? He can hiccup, and he is breathing on his own, and while some of that is reflex, the fact that he can swallow is a miracle.”
He nodded neatly and backed out of the room.
I hate you, body. I will hate you forever.
* * *
A few days later, we were alone, on the night shift. I trespassed through his porthole. The tape that held the ventilator to his head had come unstuck on a lock of downy brown, the ragged edge curling up.
I love you. I will love you forever.
There was condensation inside the tube, the lung outside his body. As it pushed oxygen in and out, tiny bubbles wiggled and burst.
“Say something,” the nurses would tell me. “Let him hear you.”
It’s a horrible thing, isn’t it, that shame was in the way. But it was. I was struck dumb with it. I didn’t know what to do other than to cry and say love love love and sorry sorry sorry. That night, I tried, a disconnected babble that turned into a wish.
Lili love, the ocean swells and makes thunder, and it’s filled with treasure and ghosts all churned up and dashed and smashed wood and bits of twine and all kinds of lost and abandoned things, and when the sun comes out, the ocean turns into diamonds and the wind makes it sing. I want you to see it. I want you to see it so much.
* * *
Ben was two pounds of spitfire. Barely a week after his birth he pantomimed outrage as if to say Leave me alone. Go away. I don’t wanna. I mad. I so mad. I scrubbed in, pressed my ear against the porthole inches from his thrashing face, and there it was. Not a cry, but an open mouth and an angry, tiny mewing.
Get mad, kid. Mad makes heat. Heat is good.
Liam never cried. He peered bewildered through slivers of black.
* * *
To live at the hospital was to live inside a hive of bees. Pumping milk in the middle of the night, the wall shook at my back. It was a living place, a dying place, with ducts and fans and machines with accordion throats that groaned and heaved, mechanical innards inhaling and exhaling. A single, long alarm would ring across the paging system: NEONATAL TEAM TO ROOM 311, STAT. NEONATAL TEAM TO ROOM 311, STAT. NEONATAL TEAM TO ROOM 311, STAT. Said once I could pretend not to hear, drift back into uneasy sleep. But echoing three times in my own private darkness, I was boggle-eyed. They said that for us, once. Ten minutes later a familiar thrum would approach in the skies, growing louder. The helicopter would land on the roof above my head, deafening then slowing, and I’d imagine the running footsteps and stretcher wheels and shouting. We were buried in countless layers of distress like the smallest of solid centers in a Russian nesting doll. Parents kept their eyes on their own incubators, thrown together to unwillingly witness one another’s heartbreak.
You resort to almost constant prayer in there no matter what you believe, even if it’s on the far end of the spectrum of crossing fingers, throwing salt over a shoulder, or knocking on wood. The humanity of it all is too thick to ignore. The air is both stale and stirred up, pulsing electric like the blades of the medevac.
* * *
I undressed and put on a johnny shirt backward so it opened at the front. Then I scrubbed in up to my elbows; sat in a recliner on wheels; watched as a team of nurses opened the incubators, navigating through a network of tubes and wires to lift the babies up, various interventions draping alongside from their two-pound bodies to the machines; heard them calling for one thing to be detached, then reattached—turn this way, move that cart—lay still as they placed one on my skin, then the other; made a nest with my arms; pushed back as someone reclined us; held my breath as they reconnected the machines; shifted myself this way and that as a nurse wrapped the three of us in a warm flannel swaddle; sighed as they pulled the curtain and left.
I looked down at my babies, faces squashed against me, mouths flopped open.
It’s hard to be alive and mad, isn’t it, mama. Shush, mama.
All three of us got damp and sweaty as tired parents and babies do. All three of us stopped fussing. Two hours passed in a blink. I opened my eyes and the nurses were waiting there, needing to do their rounds.
“You slept,” one of them said approvingly. “You slept the whole time. You all did.”
“He squeezed my finger,” I replied, groggy. Doubt rang through my head like a taunt. That’s only a reflex.
“Of course he did! He loves his mommy,” she smiled evenly, perhaps a little rehearsed, a little too pert, doing her best, I imagine, as she swept in to remove them back to their wombs.
* * *
“Whatever you do, know this,” the pediatric palliative care doctor whispered. “This is not your decision. The brain surgery was too much, the hydrocephalus on top of the bleed. He is failing on life support, so we will orchestrate his passing to be in your arms. Otherwise, he will die when you’re not here. This is not your decision. This is all of us paying attention to him.”
He was kind. We signed the piece of paper.
“Terminal babies with uncompromised brains come off a ventilator and pass away in minutes,” he spoke slowly. “For Liam, it could take a couple of hours because he’s jumbled. But he needs us to try and let him go.”
I nodded, numb. Machines were switched off, wires detached, tubes removed until he was just a boy. He lay on my bare chest and for the first time, at six weeks old, I saw and felt his face and his body without anything attached to it. The nurses loitered, clearing the debris of his intervention, and I shrieked GET OUT and they did.
* * *
I’m sorry.
I’m so sorry.
* * *
I will find you, love.
I will magic myself into milk for you when I die. I will be thirty-four again and I will wrap you up snug to me and I will know all your dimples and moles and scents, forever and ever, and that will be my afterlife, to walk with you.
* * *
Lili, I’m sorry.
* * *
For the twelfth time in as many hours the resident listened intently, her stethoscope at his back. He hadn’t taken a single breath in several minutes. He had grown cold, an inside-out draining. She declared him, again, to be faint but lingering. “His lungs are no longer working, but his brain doesn’t seem able to tell his heart to stop.”
She left the room. I shifted, and he shuddered and gulped and rasped, a drowning victim breaking the surface. His father and I cried. It was like that all night.
Just after dawn, during another one of these spells of breathless stillness, a construction crew pulled into the parking lot below. Their thumping shadows passed our window through the curtain, up the scaffolding with bagged lunches and coils of wire. We had taken away Liam’s ventilator at the previous day’s dusk. The next day was beginning.
Please
I could not release my baby into nothingness. I needed his end to be more than the rearrangement of dust. I spoke aloud. I don’t know why.
Please
The room filled up. Something arrived, listening.
Please take care of my b
aby
At that exact moment, I felt hands reach softly underneath him and his weight was lifted from my chest. I felt intense peace, joy, and lightness, a reunion, like the tickly thrill of throwing yourself into the arms of a long-away loved one at an airport baggage hall. None of those feelings were mine. I was an observer. The presence in the room took him. It had been waiting to. Then the air cleared.
The shell of my son rested on my skin as it had for the past twelve hours. There was no rattle, no heave, no murmur. Nothing confirmed it except the intense feeling of some kind of loving sorcery. I called for the resident again. She listened with the stethoscope. This time she exhaled and nodded.
“He’s gone.”
It is not in my nature to pray. The idea of an interventionist god has always been offensive to me, and religious morality (and the exclusion and war that comes along with it) even more so. In a state of pure exhaustion and despair, I had drifted toward a spirit realm only as I begged for more morphine for him—just in case.
Please, please, please let there be some meaning, some help, anything
The first time in my life I spoke aloud to nature, the only god my imagination finds palatable, I gave her permission to take my son.
There are 43,200 seconds in twelve hours. Liam died that second.