“The bad news is you’re falling through the air, nothing to hang on to, no parachute. The good news is there’s no ground.”
— Chögyam Trungpa
The morning of the night my son Lev died, I woke up early in his hospital room in the pediatric ICU, where he had been for two days. Lev hadn’t felt well overnight and, as a consequence, I hadn’t slept to speak of. My temper was short that morning, my nerves fried. I wasn’t especially anxious about what was to come, mostly because I had no idea. I powered through like always. I didn’t know that day’s sunrise would mark the last one I would have two living children. I didn’t treat it specially. I was at the edge of a cliff, but I didn’t yet know it. And then Lev died. And I fell.
In a wooden bowl on the top of my dresser, nestled among cocktail rings and loose change, lives Lev’s plastic hospital name bracelet from the day he was born. It’s always been there, since I carried it home in my pocket. And there it stays…
On the morning Lev was born, I knew approximately what was coming. After examining from all angles the problems inherent in birthing a baby whose heart was plumbed backwards, we had settled on a planned induction two days before my due date to remove as many variables from the equation as possible. I had an appointment at 6:30 am to have my water broken. I woke up a wreck. Bereft. I rode the ten minutes to the hospital in the passenger seat; in the dark of the pre-sunrise; in tears.
We’d tracked Lev’s heart defects at prenatal cardiology appointments for months and I was frankly terrified of reaching the end of my pregnancy. The way it had been explained to us, Lev’s heart defects would not be dangerous until after he was born. While he was in me, he was safe. I had everything he needed. As soon as I gave him over to the doctors, there was uncertainty. Chaos. They would whisk him away and make him medical. They would put him in an incubator and hook him to monitors. They would place IVs in him and deliver medications. They would, of course do their best to save his life, to keep him safe. And then they would set in motion their plan to cut him open and rearrange his tiny heart parts. After he was out of me, I could only wait. For months I would sit in rooms, waiting for news, and hope the prayers of the faithful held weight in the balance of the universe.
At 12:30 in the afternoon on July 16, 2007, after a short four hours of labor, I delivered Lev in a fully equipped operating room packed with capable medical strangers. There were no complications. After he was out of me, they put my new son on my chest and I got to see his chubby face and beautiful red hair for a few seconds before they whisked him away and up to the NICU to be prepared for the fight. No matter how I might have wished it different, my son would now belong to the doctors until at which point he lived or died. The next time I saw him, he was enclosed in the state-of-the-art transport Isolette. He looked to me like a rare pheasant under glass. I could touch only his hand. I didn’t know it yet, but I would know him mostly like this for the next four months. He left for the children’s hospital and I stayed behind at the hospital where he’d been born, now in a tiny mother-baby room, a mother with no baby. My legs were still numb from the epidural. Until I could stand and walk, I was a prisoner in my bed. My husband sent me cell phone photos and updated me periodically on Lev’s progress, but I was un-soothed, jealous of his proximity, frustrated that I couldn’t touch Lev or hear him cry or nurse him. My son—my tiny son who’d lived in my body and should need me, but didn’t— was hours old and miles away. In my impotence, I became hormonally furious and yelled at everyone I saw for reasons justified and not. I sobbed myself to sleep. Taking into account all that would come later, I can say— without reservation—the day Lev was born was the saddest of my life.
In my kitchen, there’s an orange steamer trunk containing Lev’s shoes and his favorite books; his shirts and tiny hats; a set of Tibetan prayer flags. There are the memorial cards from his funeral. There is his pacemaker. There are baby quilts and paper cranes and Lev’s stuffed dog who was called Ernie.
Lev’s first birthday was mostly joyous. During our summer trip to Albany that year, we celebrated my dad’s 70th birthday and Lev’s 1st birthday with a joint party for family and friends. It was lovely for everyone to finally meet the conquering hero. Though, it was somewhat of a pyrrhic victory we celebrated that day. Lev’s torso was a map of scar tissue from heart surgeries and chest tubes and central lines. He was still fragile, on the razor’s edge. He was on a regimen of meds and a rotation of therapies. He ate most of his diet through a feeding tube surgically implanted in his belly. In the night—every night— I would rush to his bedside to check if he was breathing. He was always fine, but I never exhaled.
The July Lev turned two, his right eye crossed. He’d started walking a week’s worth of days earlier and we were worried one of the spills he’d taken had jostled something vital. A few days before his birthday, we took him to the emergency room thinking: better safe than sorry. They admitted him to the hospital overnight but he was home in time for his party.
To fete the 2nd birthday of the inexplicably cross-eyed lion, we had bouquets of balloons, tables piled high with home-cooked food, and a great tureen of watermelon agua-fresca. There was a blur of children running everywhere. Lev wore his green Converse hi-tops. A friend made a sculpted birthday cake with colored polka dots of white chocolate fondant (which was so beautiful one could have entered it in a contest, if one did that sort of thing). In my very favorite photo of Lev, taken on this day, he has his head thrown back, his eyes closed in laughter. In the slightly soft-focused black and white photo, you can’t see the mysterious crossed eye that was misdiagnosed over a period of months as a symptom of a bone infection, as the result of cranial nerve palsy and eventually as a sign of a benign tumor for which we scheduled surgery in the fall. It was when they opened him up on that cool, late October morning that they finally discovered the brain cancer. The surgeon saw it with his naked eyes, everywhere, all over Lev’s brain, brazen. It had been there all along. At Lev’s 2nd birthday party, we didn’t know a thing. We ate cake.
To mark Lev’s third birthday, we had a party in the park adjacent to the hospital where we’d spent most of the preceding year waiting for the scales to tip. Lev had battled cancer for eight of the previous twelve months. He was weary and circumspect that day; a warrior at rest. And although he was home from the front for the moment, to look at him was not to gaze upon triumph. Half of his face still drooped, a lingering effect of the surgeries to remove the tumors. A long red scar snaked around one of his ears and across his head shouting through the sparse straw blond hair that had barely begun to grow back.
The mid-July heat was mean that afternoon— over 100 degrees for sure and not at all bearable; close and damp and cruel as hell. It made us quiet. My parents, a handful of our friends and the teachers from Lev’s special needs pre-school came out to celebrate. The weather and presumably the sadness kept everyone else away. The heat was so oppressive on the day of Lev’s party the guests mostly sat in the shade or stood still, leaning against fixed objects. Joss and the other kids played with Lev’s new lawn bowling set and squirted each other with water bottles. They seemed to have a good time. We all ate slowly from deli sandwich trays and communal bags of chips and drank juice boxes. There was a cupcake-cake from the grocery store with whipped-cream frosting that wilted and melted and slid off the cakes. The party was short.
Next to my bed, on a lacquered tray painted with silver birds, sits the striped zebrawood urn inside which Lev’s dust quietly settles. There is a scattering of other objects on the tray, arranged shrine-like: a candle in a glass hurricane, a turquoise floral book of matches, a set of three framed portraits of the boys, and beside the urn a smaller box that used to hold fancy French chocolates. Inside the chocolate box are the cake toppers from Lev’s 3rd and final birthday cake: three cheap plastic Elmo figurines. Prized possessions.
The year after Lev died, I was alone on his birthday; by design. Joss was in Montauk with his dad. My parents were in Albany. My friends were at arm’s length. I didn’t know if I would wake up on that morning feeling like the madwoman in the attic or like a robot or like whatever might lay between those two poles. I felt it all. That day, more than any other, I fancied myself a rōnin; a solitary soldier in service to a ghostly lion prince. I wandered the inside of my apartment absently abandoning cups of tea and plates of food, my phone alerting me all the while as the texts and emails came in commemorating the day. I went out and paid someone for another cup of tea, drove myself to an appointment at a spa— which seemed like a good idea at the time— and I sat placidly through the various treatments and pampering. I can’t say I felt any comfort, but it felt right. Afterward, I read a message from my dad and I sat in my car and wept. I forgot to breathe at one point. I’d held my breath without realizing it until I started to feel faint. Then I went shopping. I bought a few pretty things: a striped blouse, some sparkly earrings, and perfume that smelled, to me, like bright future (really like bay rum and orange blossoms). I drank a glass of wine. A friend took me out for diner food and a terrible movie. I went to sleep content.
This was the first of Lev’s birthdays where I wasn’t terrified, where I wasn’t paralyzed in some way by the looming end. The war was over. We’d been beaten. On that day, my grief was prismatic. I could see in every direction— all of the things that had come before, each of the paths not chosen. And I could see everything possible. Lev is gone. But in leaving, he made all of the possible futures. In all of them, I’m falling. The good news is there is no ground.
On the table by the front door in my apartment, there’s a framed photo of me holding Lev at age two taken in the backyard of the cottage in Montauk. He’s looking at the camera; I’m looking at him. Both of us are laughing. These are the things I’ve kept. The rest of all of it is inside me, waiting to stay or go, to get lost or be written.