When my wife Janet was expecting, she read everything she could get her hands on about pregnancy and child-rearing. She gave me regular executive summaries of her findings. While she spoke, I silently wondered about all the fussing. People had been doing this for ages. Surely, it was not that difficult?
I quickly forgot much of what she told me. One briefing, however, really held my attention. Some fathers felt left out after a baby was born, she reported, because the mothers were so absorbed in the care of their child. No worries. I planned to grant them all the alone time they wanted. In my vision of parenthood, Janet and various baby aficionados passed our infant child back and forth while I stood in the background taking supply requests or in an anteroom plying those not in the baby's inner circle with food and drink. Serving as family errand boy enabled me to read, exercise, socialize, and get out of the house without taking much responsibility for anything other than getting the right-sized diapers.
Then, our Ethan was born with a life-threatening condition known as Tracheoesophageal Fistula and Esophageal Atresia (TEF), taking everyone, even his doctors, by surprise. In layman's terms, his gullet was incomplete, and was attached to his windpipe, allowing stomach acid to leak into his lungs. He was transferred to another hospital for major surgery to correct the defect, with Janet remaining at the maternity hospital for another day recovering from a long, difficult birth. For the first time in our fourteen years of marriage, I was not able to rely on her to listen carefully, ask questions, and make the potentially momentous decisions. My stock-coping strategies, like slipping away unnoticed and taking a walk or a bike ride, going out for a drink, or grabbing some coffee and reading somewhere, were no longer viable. I had to be fully present in case something should happen.
And something did happen. I spent hours in the Neonatal Intensive Care Unit (NICU) watching nurses and technicians hook Ethan up to all sorts of equipment. There were wires and tubes connected to or inserted into almost every inch of his little body. There was even an IV on the top of his head. Late in the afternoon, he had an echocardiogram to check for heart anomalies, which are sometimes associated with TEF. As the technician moved what looked like a barcode reader across his chest covered in petroleum jelly, I stroked the back of his neck and slipped my pinky finger into the palm of his only free hand, and he responded by clutching my finger with his tiny fist. Feeling chatty, I told him about how the German philosopher Hegel believed the American concept of rights separated people from one another rather than brought them together. It was the only thing I could think of at the time. After about twenty minutes, I left for a quick bathroom break. I didn't get far before a nurse came running up breathless behind me. "The doctor needs you to come back right away. Something is wrong."
I rushed back to Ethan’s bedside. The technician said, "Whatever you were doing before, do it again please. We can't continue the test when he is so agitated."
Ethan was fit to be tied. His back was arched, and his arms and legs waved wildly, his face beet red as he tried to cry. He had the oddest silent cry that first day. Opening his mouth and tilting his head back like he was preparing to roar, he could only produce a very hoarse, rather hollow sounding squeak. The fact that his lungs were filling up with stomach acid no doubt had a lot to do with it.
Resuming my philosophical monologue, I again stroked the back of his neck as he wrapped his wee hand around my finger. He suddenly became very calm. Lying flat, his complexion returned to normal, and he stopped crying. He looked so composed, though he still must have been in considerable discomfort.
Feeling his tiny hand clutching my finger warmed my heart. I was so in the moment that I was startled when the technician thanked me for calming him down. "Huh?" I thought to myself as I glanced at her before returning my gaze to Ethan. You mean I did that? I scanned the crowded NICU. All the hustle and bustle, and yet I felt like I was watching it through a soundproof glass enclosure; none of the commotion penetrated the little cocoon I shared with Ethan. For perhaps the first time in my life I felt perfect calm. Tears welled up in my eyes. By taking my finger in his itty-bitty hand, I felt like he was asking me to take care of him.
I was astonished. He really needed me. The day before he was born, we bumped into a young couple with a baby, who quizzed us on our prenatal educational program. We were remiss, apparently, in not directing Mozart recordings and educational lectures at Janet's tummy. Alas, our prenatal enrichment program only featured the endless chatter of two hopeless lip flappers. Ironically, though, it appears to have paid off, because Ethan recognized my voice. Separated from his mom, missing her smell and feel, placed in a foreign environment, in pain, blinded by lights, overwhelmed by sound, he picked out the one thing familiar to him—my voice—and took comfort in it.
Ethan needed constant care when he came home from the NICU one month later. Eager to answer his call in the NICU, I gave up looking for a full-time teaching position and became his primary caregiver. Janet always said I was good in a crisis, and I did throw myself into his care with great determination. The fact was, though, as a bit of a special needs adult myself, I was not especially qualified for the job.
A severely compromised nervous system was a big red flag in my HR file. At age four, I had a bad case of mumps resulting in encephalitis. In the near-term, I suffered from seizures, wild mood swings, and partial paralysis. There were also a number of long-term residual effects like extreme nervous energy, anxiety, a quick temper, and a greatly diminished auditory memory. Perhaps feeling left out, my peripheral nervous system chimed in a few years later with a congenital condition causing extreme muscle wasting in my lower extremities.
This neurological damage required me to control every aspect of my day to limit anxiety and control my temper. With physical activity, mental stimulation, and social interaction, all in proper proportion, I maintained my equilibrium—part of the time. Not surprisingly, full-time baby care made this very difficult. I regrouped and looked for openings in Ethan's tight schedule. Even with the additional care his fragile health demanded, I found brief windows of opportunity to stroll the neighborhood with him, stop in a coffee shop and chat with the neighbors. These breaks did wonders for my mood after Janet went back to work and helped me stay on an even keel.
A young physical therapist with impressive biceps slammed these windows shut and locked them one snowy afternoon when Ethan was four months old. Nothing seemed out of the ordinary when the session began. For the first few minutes, she effortlessly flipped him around into different positions, as I watched in awe of her strength and dexterity. Ethan was delighted, smiling and laughing, until she placed him squarely between her inner thighs, pressed her chest forward flush against his back, and hunched her shoulders around his arms, pressing them toward the center of his body to bring his hands together. Bursting into tears, he pressed back against her chest and desperately pushed his arms out against hers, all in vain. The therapist showed considerable steeliness, as she firmly countered his efforts. Me, I would have let him lie on his back again, where he seemed most comfortable. To my relief, he settled down after a couple of minutes and began to play with some toys she had placed in front of him.
She turned to me and explained that children who have had Ethan's surgeries tend to lie on their backs with arms extended to the side, because they felt more stable this way. The problem with this was it allowed them to manipulate objects like toys with only one hand. His development, she said matter-of-factly, required that he had his "hands to the midline with mutual fingering." I was momentarily distracted, repeating that odd sounding phrase to myself, perhaps unconsciously trying not to face the life changes in the offing. She paused, no doubt sensing my effort at avoidance behavior, and began again when she had my full attention. “So, when he is not eating or sleeping,” she continued, “you must keep him in this position until he no longer attempts to lie on his back with his arms extended.”
Ethan and I spent the next six months at home, pressed tightly together in this awkward position. It was maddening at times, frankly. Nervous energy coursed through my body like a high-powered electric current, and yet I was not able to even pace around the house to try to expend it. Standing while trying to feed him solid food felt like a spa visit under the circumstances. Was the world outside our big picture window just an illusion? I often asked myself.
One thing that helped me get through this time was I had come to love holding Ethan. I was not a naturally cuddly person before he was born. At the top of Janet's Bill of Particulars against me, in fact, I was only for physical contact when marital congress was involved. The big change came when I took on the one a.m. tube feedings after Ethan came home from the NICU at one month old.
I offered to do these to give Janet some much needed break, getting some rest for myself at the same time. Too hyper to sleep fully through the night, I mostly got by with naps, and the nighttime feeding was a plumb assignment in nap terms. Swaddled in blankets in the comfy recliner, I read for a while, then listened to the hypnotic sound of the feeding tube operating, a rhythmic click, click, click, before falling into a blissful sleep with Ethan snoozing contentedly on my chest.
It didn't take long for the nighttime feedings to become more than a good nap opportunity. With his tiny head resting gently under my chin, Ethan broke down all my defenses. Sharing our warmth, feeling him breathing softly, hearing him cooing was all intoxicating. For me, though, breathing together was the most endearing. There was something almost mystical about it. It was probably not scientifically possible for two people so different in age and size to breathe at the same rate. But I was convinced that our inhales and exhales came in perfect sequence with one another. It felt like we shared a single respiratory system.
There would have been a lot of upside in Ethan’s sharing a respiratory system, because his own was under considerable strain. His strong immune system made short work of most viruses, but the after-effects of something like an ordinary cold were often devastating because of his papery airways. Coughing with firm airways enables one to dislodge and eliminate secretions. For someone like Ethan, coughing was more akin to shaking a plastic newspaper sheath to remove something gooey stuck to the inner lining. Besides the pain of this ineffective cough, there was the enhanced danger of reflux. The violent coughing was like a diversionary tactic that kept him off guard against stomach acid finding its way up his esophagus, down his trachea, and into his lungs. Hours and hours together in the recliner sometimes enabled him to get some sleep without aspirating—other times not.
When not, he developed severe pneumonias. The first one occurred when he was about fifteen months old, and he had many others over the next six years. These illnesses were especially trying. At night, he slept fitfully on my chest in a reclining chair; during the day, I had to carry him everywhere and hold him upright to feed him, give him medications, and administer breathing treatments. We were inseparable and completely isolated. Craving adult contact, I dove for the phone to talk to telemarketers and conversed so eagerly with Jehovah's Witnesses they backed away slowly after a while holding their magazines to their chests like protective shields. I was truly pitiful. One day watching Mister Rogers' Neighborhood together, tears welled up in my eyes. "Thank you, Mr. Rogers," I said, genuinely grateful, when he closed the show by saying he liked me just the way I was.
These illnesses, however, also brought us closer. One day when he was three years old, he woke up with a fever after a night of coughing. With gray skin and bleary eyes, he struggled to breathe and clung to my chest with what little strength he had. I put him in his kiddie Barcalounger just long enough to prepare some medication. He immediately slumped down and tilted to one side as though he had no bones or muscle. While I knelt next to him preparing an oral syringe, he put his little hand on my knee and said, “Help me, Daddy, please help me,” very faintly.
Terrified, I rushed him to the emergency room. X-rays confirmed he had a particularly severe aspiration-based pneumonia that required an extended hospital stay, perhaps even some time in intensive care. A room was not yet available, so we sat together in a straight-backed chair in the waiting room. The metal top of the chair pressed very painfully against my upper back, but I didn't want to move to relieve the pain for fear of waking him. Sitting very still, wincing, I recalled Janet in a wheelchair holding Ethan at the maternity hospital waiting for him to be transferred to another facility for surgery. The staff had forgotten to pad the chair or give her an ice pack, so it was unbelievably uncomfortable for her just hours after giving birth, and yet she did not ask them to set her up better, since it might mean not holding him every available second before he left.
That seemed heroic to me at the time. I would have gladly passed him off, if only for a few seconds, to get some relief. But she could not bear to be separated from him even for a moment. Looking back, I was embarrassed by my lack of understanding of her feelings then. I sighed recalling my surprise when his little head popped out between her legs. "Whoa! Who put that there?" was all I could say. I mean, it's not like I didn't know what was coming. If having a front row seat for the pregnancy wasn't enough, he was breech and had to be turned a week before he was born. The obstetrician guided my hands to feel his head and limbs while he explained how he would help Ethan execute a fetal summersault. I knew someone was inside her who had to get out, and I had a pretty good feel for how small the opening was he would use. Yet none of this prepared me for the violence of the birth. It was overwhelming. I was stunned. They were physically bound together so closely that they literally had to be torn asunder. One person, suddenly, became two. I assumed at the time Janet's primary emotion was relief. That no doubt played a part. But it became clear to me while holding Ethan in the emergency room that what she really longed for was to be somehow restored to that state, to be one with him again.
The pain in my upper back reminded me that we were still waiting for Ethan to be given a room. Glancing at the clock, the second hand seemed to move in slow motion. Two hours already? Ugh! Come on, people! Just when I leaned my head back against the wall in despair, the nurse arrived to escort us to the pulmonary floor. She helped us settle into a reclining chair together, hooked Ethan up to an IV, and placed an oxygen tube in his nose. After she left, I put the chair back and felt very drowsy. Ethan woke briefly and held his head up. Looking at me with bleary eyes, he said, "Hi, Dad," before laying his head back down on my chest and falling asleep. I gazed at him lovingly. Feeling more closely bonded with him in that moment than ever before, I was struck by the thought that this sublime experience was perhaps as close as a man could come to feeling like a mother, a state in which you were not parent and child, but one being.
I stared ahead for a while, my eyes not focusing on anything. Suddenly, I noticed the clock. Time had resumed its normal pace. I chuckled, then shook my head as I thought about how far off I was about parenting. With Ethan sleeping soundly on my chest, I noticed we were breathing in unison, then closed my eyes and fell asleep.