On Time

I t’s June 6, 2018, and I’m trying to sleep, but the heart rate monitor is beeping and the CPAP machine is hissing ceaselessly.

My daughter, Em, is sleeping in her isolette. A well-deserved rest. She’s been alive for sixty-eight hours, but it feels like weeks. Every second is magnified when life hangs in the balance.

This evening, Em’s oxygen saturation levels plummeted and she stopped breathing for a short while. Within minutes, a dozen nurses and doctors were in her room to help. The neonatologist intubated her immediately, elevating her saturation. It was almost like reliving her birth. Unbreathing, she had been intubated for the first time, a perilously long moment. Even this time, despite the speed and skill of the hospital staff, my wife Allison and I could only watch, incapable of helping her ourselves.

Besides the chatter of the hospital machines, it is calm now. My body, though, hasn’t settled. My pulse is quick, my breath unsteady. My anxiousness is feeding itself. I announce I’m going for a walk. “If anything happens,” I instruct Em’s nurse, “please call me.”

The hospital doors shut behind me, sealing off the trauma I’m leaving inside. I’m consumed by a strange feeling. This moment, so devastating for my little family, is unremarkable to the rest of the world. Forgettable.

Now that I’m outside, breathing in the cool dark summer air, time settles into a steady, familiar gait. I leave the asphalt and turn left, following the well-lit sidewalk past the hospital’s institutional landscaping: a monotonous row of over-mulched, drought-resistant shrubs. A hundred yards away, a few cars and overnight tractor trailers speed down Highway 101, drowning out the crickets.

Rounding the west corner of the building, I’m stopped in my path. Ahead of me stands a fence hung with an orange and white sign. WARNING: HELICOPTER LANDING AREA. STAY BACK TWO HUNDRED FEET. I’m struck by the private terror of the last forty-eight hours. This is the spot where, just five hours after she was born, Em arrived at the hospital in a red REACH helicopter.

The flight delivered the medevac team in fewer than fifteen minutes, whereas my drive to the hospital took forty. It felt like hours, despite the clock on my dashboard telling me otherwise. The scientific definition of speed is distance divided by time. During my drive I imagine new units of measure: times per minute I worried about Em, thoughts per hour of Allison in the maternity ward, trying to recover without me by her side.

For the two and a half days since Em’s birth, I’ve been clinging to every detail in the present. Even when I tried to take a break from the turmoil inside the hospital, I saw the landing pad, an empty square in the middle of a languid summer evening. I found myself in freefall again.

We’ll learn later that Em suffers from cerebral palsy (CP), caused by a lack of blood and oxygen to her brain when she was born. We’ll learn that her particular type of CP is called dystonia. It’s marked by involuntary muscle contractions and movements, and typically develops after an injury to the basal ganglia portion of the brain. We’ll learn of the damage to her brain when she’s two weeks old. When it comes, the official diagnosis will feel more like a formality than a big revelation, but that won’t make the consequences any easier to handle.

CP is a life-long muscle movement disorder. Although the severity can range drastically, for Em, it means she won’t crawl, hold her head up consistently, or even swallow properly. She’ll receive her nutrients through a feeding tube. Her physical and occupational therapies will help, but only incrementally and extremely slowly. It may take her several years to learn to eat or walk or talk—if she ever does.

Em’s condition will make me acutely aware of the relationship between possibility and time. While she’s young, her brain will have enough neuroplasticity to form new pathways around her injury. For some while, there will be a chance for real improvement. Those pathways, though, will never be perfect, and so we’ll have to throw the typical baby developmental milestones out the window. How long it takes Em to do certain physical activities is not important. Our only goal is for her to be able to do them at some point in her life—if possible.

I’ll have to adjust my expectations, even to let go of them. It won’t be easy; Em’s limitations will be a daily reminder of the trauma of her birth. Although the intensity of the trauma will fade with time, it will always be in the background, ready to stop the clock at any moment. But now, despite my distorted experiences of time, I find myself hopeful for the value of presence—recognizing the triumph of small improvements.

Nine months after the trauma of Em’s birth, we’re at the Stanford Children’s Specialty Health clinic in San Francisco for a neurology appointment. We are meeting with Em’s neurologist, Dr. Morris, who does a quick evaluation of her reflexes and asks us some questions about her progress.

Things have been going more smoothly at home lately. Em’s been sleeping better (which means Allison and I have, too). She’s been retching less often. Her therapies have progressed steadily. Time has advanced more normally, giving us room to breathe. But lately, Em’s started doing something new—something that babies usually grow out of by her age.

When we place her flat on her back, she startles. Her arms fly out wide to her sides. Her hands try to grasp something, and it looks as if she feels like she’s falling. Then she screams. I’ve taken a video of this, though I’m sure it’s nothing to be concerned about. As I show Dr. Morris the clip on my phone, I wait for her to tell us that it’s a phase—that there’s nothing to worry about; that we can drive Em home, eat snacks in the car, let this visit fade behind us.

But when the video ends, I look at Dr. Morris. Her brow is furrowed. I feel time slipping.

“Can you show that to me again?”

I restart the video. It’s as if I’m watching her in slow motion. Her eyes move from my phone to Allison, then to me. She inhales through her nose and exhales from her mouth. After nine months of absorbing the challenges that have followed Em’s birth, I’ve developed an ability to sense the arrival of bad news.

“I’m a little worried about this,” she says. “There’s a chance that this is something called infantile spasms. They’re a form of seizure and they can be very serious. I’d like to do another EEG study on her.”

My body feels like it’s heavy and floating at the same time. Like I’m suspended in molasses. But I find words to tether me to this moment and string them together:

“Okay, when should we schedule that?”

“No scheduling,” she says. “We’re admitting her for an overnight stay.”

When Dr. Morris leaves the room, I notice the clock on the wall has stopped ticking: 11:52 a.m.

Just over two years later, I’m in our backyard relaxing in our new spa with my twelve-year-old stepdaughter, Sara. The jacuzzi was a pandemic purchase. Apparently many other people had the same idea, since it took over three months to arrive. We’re still in the honeymoon period, using it every day.

Em is asleep in her room. I can see her on the video monitor resting on the patio table. Almost three years after her birth, my constant worry has waned. We’ve gained some semblance of routine. But I can’t help glancing at the monitor, because when trauma returns, I know it won’t knock. It will come barging in.

I lean my head back in the warm water, thinking about the trip that Allison, Em, and I made earlier today. We drove to San Francisco for Em’s latest eye doctor appointment at UCSF—a routine check-up after her eye surgery three months ago.

The short trip was remarkable. The drive there, the appointment, and the drive home totaled nearly four hours that Em went without music. Usually she fusses if we don’t play it. Though Em is unable to talk, she spent the ride making happy noises, looking out the window from her car seat.

In the past, car trips were awful. Em’s uncontrollable muscle movements made riding in the car seat unbearable. I was always the one driving, which meant I couldn’t help while Allison tried to comfort her. The only respite we had from Em’s distress was achieved by playing “Old MacDonald” on a constant loop. Time crawled.

Lately, my frustration is reduced (though I still have “Old MacDonald” looping in my head the whole drive home). The gaps and intrusions in time manifest more subtly. CP is a life-long disability—I still deal with the trauma of Em’s birth on a daily basis. But I’m learning to adapt, and to understand what our life will look like in the future, even if I can’t predict it.

Today’s trip wasn’t what most people would call normal. We fed Em meals through a feeding tube and I wheeled her into the hospital in a specialty stroller. But it finally felt like time was passing normally.

After we got home, we ate dinner as a family. Allison, Sara, and I played a card game while Em played on the iPad. Allison gave Em her medications and rocked her to sleep before heading off to bed. Now, only Sara and I are up, relaxing in the spa.

“Whoa, check out how pruney my hands are,” Sara says, leaning toward me.

I look at her hands and then my own. “Yeah, mine are getting pruney, too. We should probably get out. It’s a school night for you.”

She wipes a bead of water from her brow. “What time is it?”

“I have no idea.”