The way life works is that we all change, all the time. But some of the time we change more rapidly. You’d be ten now, and I don’t have a clue who you’d be, or how you’d be in the world. What I know is that every second would’ve been new—a chance for you to discover something, to learn, to think, to feel. To find mischief. Or joy. Or joyous mischief.
There is no pill. No physical therapy can strengthen my reserve. No infusion of chemicals can lessen how deeply I feel this. There is no relief to be found in any of my textbooks, medical literature, or online searches. Nothing can take the edge off. I wake up with it and begin the day feeling acute pain, but camouflage it. It is my job to alleviate my patients’ pain. I support them through their heartache while my own throbs.
I was told grief would come in waves; remain messy and untamed, and I should welcome it. It wouldn’t always feel this dark and heavy, but there wasn’t a timeline, and it wasn't a linear process. Mental health professionals didn’t give validation to the infamous “five steps of grief” anymore, so there was no pressure to evaluate myself. I should just feel it, talk about it, and know that it was normal.
Among those who know the agony of facing a world that pretends your child did not exist, my voice hears echoes of itself. I hear a choir of courage, a melody of survival. Sometimes, refreshingly, my ears pique at words my voice hasn’t yet spoken but knows by heart.
These images assault me as soon as my guard is down, when I drift from waking towards sleep. I jolt awake, but even then I can't fight them off. They are too vivid, too real to disperse by an act of willpower. I don’t bother trying to convince myself that my fear is not a realistic one. I simply get up and check on my boy. I press my hand to his back, feeling the air go in and out. Breathing. He is breathing.
Regardless of the frequent opportunities, I struggle to frame the discussion. Death, of course, does not follow a prescribed timeline, it does not bend to logic or will, it is not fair. Not everyone young will grow old. Far too many times I linger in the anxiety of the subject matter, lost at the beginning of the conversation, pen and mouth idle to find even the first word to console a heartbroken friend, or to answer an inquisitive 4-year-old.
As I stand in front of that card section—trying to be the friend I know my friends wish I could be—I realize amidst shaking hands and unsteady heartbeat that I can’t do this. I can’t bring myself to select, pay for, and send that card. Besides, what on earth would I write inside? I feel anxious just thinking about it. My baby was sugar and spice and everything nice, a sweet baby girl who brought us so much joy and happiness. Her birth indeed fully changed our lives. Her death is what has changed us the most.
At the end of my 33rd birthday, I scrolled through a lifetime of photos of me wearing my tiara at breakfast, sipping tea with a grin on my face, opening gifts, blowing out candles, cutting a cake. In recent years, I've done it all with a smile plastered on my face, unnatural, my eyes as vacant as shop dolls. I have been posing. I don’t feel the way I look or look the way I feel. I am not that smiling woman.
You round a corner and the lamp swings just so, and you catch a quick glimpse of something entirely magnificent, something that steals your breath. A tapestry, perhaps. Or a floor to ceiling stained glass window. You know, completely normal things you find in normal castles. Except that long ago all lights in this one were put out, and there is no fairy tale twist to reverse this curse.
It was only in that moment, ten years later, that I figured out why I did it. Why I circled the NICU like an animal, fending off every other lens. It was for Ben, for his ballast. So that someday, he might attach Liam’s humanity back to him, like Peter Pan’s shadow, despite all the rest.
All the time, babies are born perfect and alive without prenatal care, vitamins, heartbeat monitors, ultrasounds, and tests. By doing these things, we think we have some control, when we don’t. We just don’t. So when something goes wrong (the baby is formed with a heart defect; no kidneys; neural tube problem; the cord knots; the placenta tears away; the cervix gives out) ….what do we have?
My friend shifted his weight and looked around the room. “Oh gosh, okay, wow. I’m so sorry. Oh, man. Yikes.” For days I thought about the exchange, and how badly I yearned to speak from the vantage point of a mother with a live child. No one had ever innocently asked me about my baby. Until I told this friend that Cora died, the dialogue was unfolding the way a typical one with a new mother should. It felt weird, wrong, wonderfully make-believe.
There are two of you in my mind. One is the girl you had some chance to be: bedbound, uncommunicative, unable to thrive as you grew. But there is another other girl as well. The one you would have been without that single letter randomly altered in your DNA: perfect. All of your potential preserved, ready to unfold.
They are songs of grief and death and the intersection of life and loss that is my permanent residence. These are the melodies I frantically return to each time I feel I have lost her again, clinging to each syllable when the strum of grief reverberates throughout my hollow body. They are the exact same words that remind me that I will always be able to find her in the deepest parts of my soul, that she will forever be a part of me.
Guilt, the sharp-toothed animal, snakes in place of a tongue, hissing, biting, cursing, blaming. 'You should have, you must have, you did not…' The other face of imagination, uttering the same what if and if only over and over again. Ravaging my head, not letting me sleep, for fear of waking up to find her dead.
'Not your fault.' A mantra, a song, a pleading hymn for rationality. Pounding in a head dizzy from lack of air, dizzy from this new reality. 'Not your fault. Not your fault. Not your fault.' Months out, I am still free falling. The air is still thin. The pain is still there, a knife between the ribs, the sinking feeling of the stomach as I plummet thousands of feet through the air, without any promise of landing.
I’ll give you a minute, the doctor said. / A minute to sort through the daze / A minute to take in that the baby was gone / A minute to cry out in pain.
My body would want to clench every tooth, grip, joint, sinew, as though its own hanging-on to itself might combat the inevitable force of impact. But it can't. The inertia that would crumple a car is a thousand times stronger than me. If I go limp, there's a chance I might knock around inside disaster with a fraction more fluidity. Gone limp, I might break a little less.
They call it Pain Olympics. 'Don’t try to play it,' wise people say. 'There’s no point.' For a long time, I couldn’t help it. I kept it to myself, mostly, but Pain Olympics had become a reflex beyond my control. I didn’t want that gold medal. But I’d be damned if someone else would try and claim it.
I know they are just words. I know we have to share them. But it feels like we should get something more. Maybe it’s not the fault of the word. Maybe the words just simply don’t stretch as far as we are gone. Maybe there are no words to truly describe the pain of it all. Sometimes, in my angriest times, I wish there was something sacred, something more, something I could selfishly claim and reserve for those of us who have walked this path and nobody else. It just doesn't seem fair, to share.
As I walk to my car after work in the early evening darkness of winter, I realize that my shaky situational management has, what appears to me, a consequence. I cycle through the past moments of avoidance and self-preservation, replay the flashes of tense minutes forced upon me, of gritting my teeth through apathetic dismissals veiled in platitudes. I weigh them against the softer moments of kind words, timely gifts and acknowledgement, but find an imbalance.
We’re stuck in between. In between worlds and in between words. And while our friends live in their whole worlds and speak in their whole languages, and we take part and play along, our fragmented lives and fractured words cannot fit or reflect perfectly.
'How Not To Say The Wrong Thing' was originally published in the LA Times in 2013. There is a way, it purports, to show up in the company of people in the middle of crisis, trauma, and loss. People say there is no right or wrong way to grieve and that's true. The aggrieved grieve as they must, a hundred different ways, as is their emotional autonomy. But there sure as hell is a wrong way to be around grieving people. I've seen it. I've witnessed it. Have you?
A baby entered my home for the first time, but she wasn't mine. My son watched the baby tentatively, and finally went over to say hello. Uncertain of how to greet her, he waved. He was fascinated by her tiny fingers and toes, miniature in comparison to his own. All the while, I was fascinated by his bravery, strength, and resilience. He was thinking about his lost sister, the one he never met. The one he often longs for. He handled this other baby, his cousin, so well. So did I. If he could handle it, so could I.
When Grief comes again, you make tea. Or wish longingly that you had it in you to make the tea. You don’t try to chase it away (as if that would ever work). You make room.
I was a different kind of mother
and nothing about that is self-evident
We are strangers to one another. You arrived to me through a website in a series of zeroes and ones. But we are space travellers connected forever by shared astrophysics. I was once pulled apart into a drifting cloud of atoms and molecules. Like oil in a dish, my specks magnetically drew to one another over what felt like millennia until there were enough atoms and molecules for an arm, a kidney, an ear, until I was myself again.