Dear D:
Every morning when the alarm rings, your cat Zoey jumps up from where she is sleeping on the foot of the bed—usually on my legs, which makes rolling over really hard—and climbs on top of me, licking my face in anticipation of being fed. Sometimes it’s annoying, but mostly it makes me laugh. At eleven pounds, Zoey is the weight of my small kettlebell, and after scratching a little around her neck (which you know she loves), I have to push her off so I can breathe.
Eleven pounds is what you weighed when I brought you home from the hospital, after your surgery. For the first year of your life, every night, you slept on top of me. I had begun having you sleep that way at Children’s Hospital after waking up a few times with no baby in the room. The nurses would wheel you out because there was a crisis, like a dislodged feeding tube, or because you were the only baby on the endocrine ward and they wanted to feed you rather than wake me up to do it—your cuteness being the deciding factor more than anything else. But if you were sleeping on my chest—and all mothers sleep lightly, I think; nature wires us to wake up at the slightest sound—they couldn’t take you out without waking me. Because even with you sleeping a few feet away, the brief interludes of not knowing—when they took you into the closed “booboo room” to reinsert the dislodged nasogastric feeding tube or move your clogged intravenous line to a different arm—was an abject horror. Whatever I imagined happening to you was far worse than reality, even though seeing you cry made my breasts leak milk and my insides quiver not so much with worry, but with shared distress. You were inside me for almost ten months. It’s not surprising that after you were delivered, my body registered your pain—and still does.
I have many mental pictures of that time, but one of them more than any other is—to me, anyway—analogous to the situation in which we now find ourselves. In the wee hours of a late September morning in 2000, your father and I walked, you in my arms, to the pre-op area in the Children’s Hospital of Philadelphia. Born on August 2nd, you had spent almost five weeks in the Children’s Hospital of Boston, where doctors were unable to treat you. You were diagnosed with hyperinsulinism—too much insulin, which depresses blood sugar—a disease then treatable at only three locations: Jerusalem, Paris, and Philadelphia. I have written about the exhausting tribulations of our time in Boston, including the suspicion that I was somehow making you sick. I can’t go there again; I’ll have recurrent nightmares for a week. The important thing is that we got clearance from the insurance company for the Lear jet that took us almost from door to door, Boston to Philadelphia, in the middle of the night. The endocrine team at CHOP was headed by Paul Thornton, an Irish transplant who now heads an entire clinic for children with hyperinsulinism, in Texas. Those children are treated as you were, with a high degree of successful outcomes. But in 2000, his protocol was still emerging, and pediatricians were learning how to screen and diagnose children, whose low-blood-sugar seizures were often misdiagnosed as epilepsy. The fallout of mistreated seizures is permanent brain damage, and I know this not from an academic perspective, but because of a little girl named Amal who was at CHOP while you were there. She was almost one year old, but she couldn’t sit up, babble, or hold a cookie. I had seen her mother before and after your surgery, when it was clear you were cured. The mother expressed the hope that Amal would have “the same outcome” as you. I casually shared that communication with Dr. Thornton, who shook his head and, in a few words, conveyed to me that Amal’s brain damage was tragically permanent. I had known all along how very serious the disorder was, but seeing that beautiful toddler who would never toddle, her abundant brown hair tied with pink ribbons, I understood how dire our own outcome could have been.
Amal was a shadow, the story of misdiagnosis, the seed of a ruined future. I wonder where she is today; she would be twenty-one, a year older than you. She is out there, somewhere in the world, unable to feed or dress herself, or perhaps even get out of bed. She requires 24-hour care. What about her parents? Did they remain married, or was their partnership fractured by financial woes, exhaustion, and disparate views on how much care to give, or whether to put Amal in an institution? What about her brothers and sisters—I seem to recall she had at least one sibling. What was it like for them to live with a sister so needlessly disabled? Did they lose out on parental attention? Did they grow up knowing they carry the genetic mutation that could disable their own children, if not detected early on? And how many Amals are out there? Each of them is one facet of a family living with disability and—maybe—despair. I saw many such children in CHOP, and I saw many such parents as well.
The doors to the pre-op room opened, and we took you in. It was about 6:30 in the morning. The nurse, whom I remember was Russian, took you from my arms, and I began to cry. I had been told of the surgical risks, as had your dad; we had to sign the consent, which listed death as one of the risks. I wondered, as I handed you over, if I would every see you again. I remember your father saying, “Goodbye, Zachariah,” a term of endearment that vanished when we split; then I kissed your damp little head and said, “I love you, Zachary.” And you disappeared.
The operation was supposed to take at least ten hours; the doctors had advised us to leave the hospital and get a break. But I was exhausted and dirty. I had no clean clothes—I had been rinsing things in the hospital sink for weeks, and everything had a greyish tinge. All my attire was maternity, meaning yards and yards too big, and my clogs had run over on the sides from pacing. My short hair had grown out and was flat and unmanageable, and my fingernails were all bitten down to stubs. I knew that we would not return to your hospital room after the surgery, because you would go to the NICU; your bed in the regular ward would go to another waiting child, not to the parents who had been crashing there. I opted to take a nap, with the goal of cleaning and organizing our stuff when I woke up. But half an hour later, your father’s telephone rang, and he shook me awake.
“The nurse just called—they’re finished!”
Finished with what?
“The surgery!”
It had been less than two hours since I saw you. I sat up, confused.
“They found the lesion,” your father said. “They’re closing him up now.”
“OH MY GOD!” I yelled and leapt out of bed. We practically ran down the escalators; every part of me quivered like jelly. We paced outside the recovery room’s swinging doors thinking we could see you right away, but no: you were still anesthetized. How long we ended up sitting there, I don’t know; at least an hour. I was so tired, my body swayed from side to side, and I stunk from perspiration. Even though I was recovering from a c-section, I wasn’t a patient; I was sitting among other families. But I was still in my nightgown, and unwashed, having long ago given up caring how I looked.
When the doors did open, we stood up, but the team of doctors came out, not you. Their faces were lit with joy. They were happy scientists who had just witnessed a perfect but until then aspirational outcome. “Zack’s doin’ great,” said Thornton in his brogue, and explained how, the thing that never, ever happened, happened: The surgeon had seen the normally invisible lesion. A “blush” was how Thornton described it. The surgeon snipped it out, and pathology confirmed the discoloration as the source of your erratic blood sugars. You lost only a quarter of a teaspoon of blood; no transfusion. You were done.
For weeks I had been in a kind of suspended animation, waiting for the nightmare to end. Now I had another kind of disbelief.
“I don’t get it,” I said to your father. “Explain it again to me so I get it.”
“They found it on the first try” was all he said, but not unkindly.
I washed and dressed, and two hours later we were again sitting outside the swinging doors. They opened to a posse of nurses and doctors wheeling an adult-sized gurney with a tiny bundle in the middle—you. I ran past the no-admittance sign before they were all the way out, and they stopped, but only for a minute; you were headed to the NICU. That’s when the picture of you was so indelibly laid down in my memory that conjuring it even now softens my insides with the somatic imprint of a new mother’s anguish.
You were pale and swollen with a tube in your nose and another in your mouth. You had red patches around your eyes from where they had been taped shut, and your sprawling limbs were ice-cold. They had chilled you for the surgery, to minimize bleeding and infection, and now you lay in a nest of heat-packs. You trailed a bramble of intravenous lines, electrical wires, and drain-tubes that prevented even a longed-for half-hug. But I leaned over and kissed you, and that’s when I registered your eyes.
They were open, your blue-brown pupils big and dark, and cloudy with the ointment that had been smeared on them for added protection; still, through all that swirling haze, you found your mama’s eyes, and stared.
I’ve undergone brain surgery; I remember how strange the world appeared from the horizontal position on a gurney, the flashing overhead lights and undersides of faces, and the stiff bloodless feeling that makes not only calling out but crying impossible. You went through all of that as a defenseless newborn, and you were now on the other side of that ordeal. The memory of that moment reminds me that I will never be a normal mother, and I will never be a normal mother to a normal newborn. I don’t have a funny-charming birth story I can share with my “chums.” No, I will forever be mother to the dark-eyed babies of the world whose faces I see in footage about war, catastrophe, and outbreaks. Their big eyes are everywhere, searching for their mothers and fathers, and they stir my insides with the somatic imprint of anguished childhood.
But my memory is not only about pain; it is also about resilience. Even in that moment when your health still lay in the balance, those big dark eyes were like pools of deep water pierced by sunlight. I glimpsed something like the soul shining up from their depths, the antithesis of shadow, your insistence not only on life but on life with love.
You emerged from that operating room with a scar that horizontally halved your belly. First it was red, then it was white. I thought it would fade entirely, but instead, it grew as you did, morphing into the faintest crease, curved upward like an extra laugh-line. I have a twin scar in my abdomen from the c-section, although it is not truly a twin because it is lower and smaller; in fact, almost completely invisible. Invisible or not, our scars memorialize that time.
Some children develop health or learning problems when they get a little bit older; some, like you, live through divorce and even the death of loved ones. But for you, from the get-go, life itself was the challenge; you had to fight for it. I was right there, fighting alongside you, as was your dad. He—unfortunately—was also battling me, and though I don’t understand that entirely, I choose to believe that, at some level, he—like me—was profoundly terrified that you would lose that fight.
You didn’t. You are a tall and strong young man whom I cautiously expected to grow up to be a handsome shrimp—the doctors told us surgery might inhibit your growth. That’s another way you have defied expectations; in a phrase I used to detest, you have “landed on your feet.” But two decades later, you are also still that infant whose clouded eyes gaze out at a big strange world in which a mother is calling to you.
I hope someday those eyes can find and return her gaze.
Love,
Mom
Beata Infantia 