When the sonogram tech told me we would be having a boy, I cried in relief. I’m not the praying sort, but I had spent the previous few months appealing to any deity who would take my message. “Let it be a boy” had become my mantra.
While I longed to have the same close relationship with a daughter that I’d had with my own mom, I also knew the odds. The dystonia that I share with my mother, a disorder that makes my body bend and jump unpredictably, that chokes my voice and over time will disable me, when genetic, is far more common in girls.
It could be years or even decades before we know whether he has it, but on that day I felt as though the odds were stacked in our favor. I looked to my husband, “A boy,” he whispered in wonder, his eyes wide. A boy.
Our son was born in the way babies are born. There was an early rush to the hospital. We were sent home to wait out the first contractions. The next day, the labor was too slow, and he arrived via C-section, perfect, beautiful, and ours.
He looked eerily like me. Our baby photos are so similar that even my parents can mix them up. My husband fretted that he’d inherited his large ears. If his arm twitched in his sleep, if his cry sounded broken, I feared what he might have inherited from me.
In the first few months, he did everything I could have hoped for. He crawled early. His arms were strong and, under his forceful infant’s will, moved fluidly. As he started babbling, his tiny gah’s and da’s were forceful and clear.
Our baby photos are so similar even my parents can mix them up.The usual parental worries that are born right alongside most children came in triplicate for my husband and me. Ever watchful for symptoms, I became sensitive to those moments most parents cherish—those when my son would mirror me. If his hand turned when he crawled, I’d look to my own hooked appendage, and miss the point. He was crawling.
Meanwhile, my husband’s concerns came in the form of subterfuge. In training as a pediatric neurologist, he knew precisely what to watch for. If a movement hinted of disease, he took note, but then—rather unsuccessfully—tried to keep his observations to himself. He didn’t want me to see our son for his neurological disease only, if he even had one.
When he wasn’t at home conducting too-attentive infant surveillance, my husband filled his days tending to sick and dying children. His hospital hours consisted of closely monitoring blood levels of oxygen, sodium, and a whole periodic table of bodily chemicals that could spell doom or signal a child was on the mend. On returning home, he would report that fatherhood had made him a better doctor. Though he had always been a compassionate man, having his own child had given him a richer understanding of what was at stake for the always anxious, perpetually overtaxed parents of his patients.
“You try singing him to sleep,” my husband insists. I’ve always hated singing. I have a voice that’s been called raspy, gravely, nervous, grating. But it’s four in the morning and our three-month-old just won’t quit crying. He’s been diapered and fed, and my husband has been rocking and singing for half an hour. Fleetingly, I think that theoretical physicists should study the passage of time during infancy, for just as the volume of his voice has increased, the passing seconds have become frozen in a desperate vortex of high-pitched screaming.
“You know I can’t sing,” I start to explain. Exhausted, my husband casts me a look that cures my resistance. “Fine.” I take the baby from his arms and replace his improvised verses of “Hush-a-Bye Baby” with a round of “Ob-la-di, Ob-la-da.” At the sound of my voice—the very attribute that fills me with self-loathing—he quiets. The cries diminish into quiet fussing as my wavering tones become gentler, carrying a sweetness I rarely muster when speaking.
With the arrival of any baby comes a typical onslaught of excited relatives, and ours came in force. Our son was the firstborn in his generation and so on any given weekend, grandparents, great-grandparents, second cousins, or great-uncles filled our home to overflowing. We became desperate for infant-friendly group outings simply to break up the otherwise lovely but repetitive visits of family gathered in our living room, staring for hours at our baby.
“Uh, I could show you all where I work,” my husband offered a group of weekend visitors from our extended family.
The merits of visiting a children’s hospital when my son was healthy escaped me. Nevertheless, and with a first-time mother’s hyperawareness of germ and plague, I wheeled my son’s stroller through the automatic doors, holding my breath and willing my baby not to inhale what was surely a cloud of infection.
Trailed by an entourage of grandparents and great-grandparents, we moseyed through hospital wings where children were hooked to machines and parents paced. Despite the cheery murals and helium balloons, we couldn’t help but feel like intruders. Children’s hospitals are not places many people visit voluntarily, certainly not as tourists.
In an attempt to navigate his impressed and excited family out of the earshot of hard-working nurses and worried parents, my husband guided us to the older parts of the hospital. The neonatal intensive care unit had recently been rebuilt, and the old NICU stood empty at the far end of the building.
Traipsing through the still-functioning automatic doors, our chatty group grew hushed. Unlike the rest of the hospital, which was filled with the jingling white noise of beeping monitors and ventilation machines, here the only sound was the soft squeak of our sneakers.
“Over here, everyone signed as they were leaving,” my husband explained, pointing to a wall covered in finger-painted scrawl that marked a history of discharges and departures.
My husband hadn’t called back. I could safely assume at least one family was experiencing a worst-ever night.In pinks, blues, and greens throughout the ward were messages like, “Johnnie, we know the angels will hold you now,” and “Goodbye, my sweet boy,” and “Thank you, staff, who helped me say goodbye,” and in the smaller, jagged script of a child, “Maya, I love you.”
Biting my lip, I pushed the stroller away from the crowded family. In what used to be a patient’s room, I stopped to read the painted notes edged in hearts and rainbows. “Nelly lived here.” “Mommy loves you.” I released my grip on the stroller and ran my finger over the careful script. It was like touching a ghost, passing my hand over another woman’s grief. Tears burned my eyes. Behind me, my son made one of those sweet sleep sounds to which I had yet to acclimate. Each coo was still a pleasant surprise, a reminder that he was here. I turned to caress his face, careful not to use the same hand I had run over the painted memorial. If even the memory of death were contagious, I would keep him safe.
All around me, rainbow colors spelled out the fragility of life, the love of heartbroken parents, and the departing hymns of sisterless and brotherless siblings. In a quaking voice, I sang a little lullaby, a small prayer, a mother’s tribute.
Last night, my husband was working over night, tending to other people’s children. At home, my son and I worked our way through our customary nighttime routine: photo text message sent to Daddy at work, bath, feeding, diaper, and book. My husband hadn’t called back, and I knew this meant another busy night on the wards. I could safely assume at least one family was experiencing a worst-ever night.
I clicked off the lamp and held my son close, his head on my shoulder. Though I’m still not a praying person, as he’s grown, his small warm life has instilled in me a habit of counting blessings. My good fortune, though tenuous, is overwhelming at times, and with a trembling heart, I cling to him.
“Good night, baby bongo, it’s time for you to sleep,” I quietly sing a lullaby we made up for our child. “And dream so many pictures of how life’s going to be…” My voice rises and falls with the rhythm of the rocking chair, and now, it’s not garbled or cracking. It’s soft, but clear.
Nestling his head into my shoulder, my son’s lips part, and though his eyes are closed, he begins mimicking the melody. His voice is high, a little boy’s voice, and it overtakes mine. I run a few fingers over the soft hair at the nape of his neck, and he giggles. The song runs its course, and in a moment, he drifts quietly to sleep as I do my best to capture that sound and impress upon my mind its strength and its clarity.