My Son Zachary

AFTER TWO AND a half months, Gerry left the hospital and came home, breathing on his own and continuing to gain weight. But for Zachary, the road was tortuous, filled with the twin cruelties of hope and despair, and it was hard to know which was worse. The lungs of both boys had been severely underdeveloped at birth because of their prematurity, making it impossible for them to breathe on their own. They were immediately put on respirators, and both needed supplemental oxygen to survive. Almost from the beginning, Gerry began to be weaned off the oxygen. But the weaning process just didn’t take hold for Zachary. He was still on a respirator. He still needed an enormous supplement of oxygen, and it seemed the level would never be reduced. He would do well, and he wouldn’t do well. He would become animated and then non-responsive. The monitor tracking his heartbeat would record a steady rhythm and then sink perilously low. He was caught in a horrible physical vise: When he tried to breathe on his own, he exhausted himself. And because of all the energy he used to breathe, he didn’t gain any weight.

The skin on his legs peeled from the constant glare of the bilirubin lights. He had tiny scabs on his feet. There were IVs in both of his hands, and when the doctors ran out of veins, they shaved part of his head and put an IV in his scalp. His eyes were red and his eyelids purplish, as if he never slept, and there were constant concerns about a common disease of prematurity, called retinopathy, because of its potential for blindness.

The doctors and nurses were doing everything they could to save him. When it came time to do a procedure—locate a fresh vein for an IV, reinsert the tube for the respirator—they did it the way they had to, with clinical professionalism. But it still seemed inhuman—this tiny living thing, not even two pounds, poked and stabbed with needles and baked under lights like a piece of barbecue on the grill. He felt pain, but because of that tube stuck into his throat, the only cries he could make were soundless. He hated that tube. With those matchstick fingers, he would pull it out. But that only meant he would have to go through the horror of having it reinserted. Those cries would rise up again in his shivering body, those sound less cries that still echoed like a thunderstorm, and if you were watching, which I could only do once, you felt nauseous from his agony and your own helplessness.

The only salvation, if there was a salvation, was the belief that none of it would remain permanently embedded in his consciousness, that what he remembered when he thought about the beginning of life, if he got to that beginning, would not be this.

And there I was, a father, his father, unable to do anything but stroke his hair and be at his side for the next round of medical torture. I acted with total devotion, because there was total devotion. Under the circumstances I thought was holding up well, but I was continuing to unravel in ways that I was aware of and in ways I would not be aware of until much later, creased with fear and guilt and maybe even shame.

Aug 24, 1983

I feel incredibly unsettled today. My stomach chums, and every facet of my life is unsettled. I am terribly fretful for my babies. I think about them all the time. Zachary has the most adorable, sweetest I face I have ever seen. He is beautiful and I endearing, and the thought of anything happening to him would be devastating. A child that sweet and tender has to live. I wonder sometimes if all the parents of these tender babies feel ashamed. It strikes me how whenever we talk to one I another, it’s as if we somehow share a dirty secret that we don’t want to reveal to anybody else.