Father's Day: A Journey into the Mind and Heart of My Extraordinary Son

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Zach

I am meeting Zach at Brooks Brothers in the sodden, sullen aftermath of Christmas. He has just come from work at the supermarket where he has bagged groceries for four hours with one fifteen-minute break. I cannot imagine my son doing such work at the age of twenty-four. It shames me to think of him placing sweat-drenched jugs of milk into their proper place and learning initially, with the extensive help of a job coach, that the eggs must be placed separately in double plastic bags. He has been doing the same job for four years, and he will do the same job for the rest of his life. My son’s professional destiny is paper or plastic.
   Except for brief lapses in which he pesters fellow employees like a seven-year-old, following them and calling out their names in a purposely aggravating singsong voice when they are trying to work, he does his job well. He limits his conversations with customers, although by nature he is ebullient and friendly. He no longer interjects his views, as he did several years ago when he was working at K-Mart one summer stocking supplies. When a customer asked where to find work gloves, he announced that he found it an odd request: “What do you need gloves for? It’s the summer.” It defied his sense of logic; gloves are for cold, not hot, and Zach just wanted to make sure the customer understood the order of things.
   He is generally well liked. Female cashiers call him “my guy” and “my baby” and treat him with protectiveness. He calls them by their first names, as if they all served in the trenches of World War I together. But he lacks the dexterity, or maybe the confidence, to handle a register or work the deli section. He fears change, because routine is the GPS that guides him. He orders the same entrée virtually every time we go out for dinner: salmon. He occasionally ventures out into the uncharted territory of a Cajun chicken wrap or even a crab cake, but it is the pink flesh of salmon, even if it is more gray than pink and flaking off in dry chunks, that safely brings him home. He leans back in the La-Z-Boy I once gave him for his birthday and often watches the ten o’clock news on Fox, not because he wants to keep up on current events, but because he takes comfort in seeing the usual television newsmakers like the mayor and the police chief and the indicted city official proclaiming innocence although the payoff money was found inside his pants. He also liked learning the names of the anchors and the weatherman. The world by its nature is chaotic and unpredictable, but Zach always narrows it down to a reliably straight line.
   Because of trace brain damage at birth, his comprehension skills at the age of twenty-four are roughly those of an eight- or nine-year-old. He can read, but he doesn’t understand many of the sentences. He has basic math skills, although he is still prone to using his fingers. He understands money to a certain degree. Because his mother, Debra, and I encourage independence, he is allowed to use public transportation to go to Philadelphia where his other job is, stocking supplies at a law firm, and where his brother lives. The train stops at 8th Street and Market. He is supposed to walk the rest of the way if it is daylight — about seven blocks. But sometimes he sneaks in a cab ride. The fare is ten dollars. He dutifully pays the meter but then he leaves a five-dollar tip, making him a favorite among Philadelphia cabdrivers who otherwise drive in silent misery.
   He can’t add a hundred plus a hundred, although he does know the result is “a lot,” which is close enough when you think about it. He goes to movies, but the action and plot don’t filter down to him; he seizes on images that he has seen before. I took him to see Spartacus once, when he was nine, and, after a blood-flowing scene at a Roman villa where Kirk Douglas single-handedly kills two million buffed-up soldiers with a plastic knife, he turned to me and said, “Look Dad! A pool!” He has always loved pools. In his early teens, he belonged to a swim club that competed against other clubs. He swam the fifty-yard freestyle. He finished far behind the other contestants, but it didn’t matter. He still finished, every stroke like swimming against a frothing high tide. To this day, I don’t know how he did it. It is the most monumental athletic feat I have ever seen.
   His IQ, which has been measured far too many times, is about 70, with verbal scores in the normal range of 90, but with performance skills of about 50. I love my son deeply, but I do not feel I know him nor do I think I ever will. His mind is not simple. It is limited to a degree that profoundly frustrates me, but it is also inexplicably wondrous at certain moments. I have dedicated my life trying to fathom its inner workings. I can make educated guesses, some of which I think are accurate. I’m not a psychologist or psychiatrist, but I have spent nearly a quarter century trying to pinpoint the best learning and life strategies for Zach, so I am far more confident of my conclusions about him than theirs, some of them so haphazard they might as well have been made during the fourteenth hole on Maui before the convention luau.
   It is strange to love someone so much who is still so fundamentally mysterious to you after all these years. Strange is a lousy word, meaning nothing. It is the most terrible pain of my life. As much as I try to engage Zach, figure out how to make the flower germinate because there is a seed, I also run. I run out of guilt. I run because he was robbed and I feel I was robbed. I run because of my shame. I am not proud to feel or say this. But I think these things, not all the time, but too many times, which only increases the cycle of my shame. This is my child. How can I look at him this way?
   Because I do. Because I think we all do when confronted with difference, reality versus expectation never at peace or even truce.

As his father, I should go to watch him work at the grocery store every now and then. I should offer support and encouragement because he is my son. I did go once. Zach was in one of the aisles on a break, and he didn’t know I was there. I saw a coworker approach him. I thought they were friends. It made me feel better. The coworker spoke with rapid excitement.
    — Hey, Zach!
    — Oh hey Brian!!
    — Hey, Zach, you know the woman with the big tits? She wants you, Zach! When you gonna put the move on her?
    — Yeah.
    — She’s waitin’ for you, Zach! You better do it soon!
    — Okay Brian okay!
   Brian knew Zach was different. He knew from the way Zach talked aloud to himself. He knew from the way Zach paced and took in breaths like he was gasping for air. He knew from the sudden tics that sometimes overcame his arms and torso. He knew from the way Zach walked, slightly hunched and Chaplinesque, one foot toward the east and the other toward the west. He knew from the way Zach had difficulty understanding. He preyed on Zach with leering joy. He laughed at Zach and walked away. But that wasn’t what hurt me most. What hurt me most was how Zach welcomed the attention. He yearned to please Brian. He yearned for Brian’s acceptance, although he did stop short of seeking out the woman with the big tits.
   And that still wasn’t the most painful part. I should have grabbed Brian by the neck. I just ran.

I am forever running. I am still running from that moment I first saw him through the window of a hospital operating room on a suffocating August day in Philadelphia in 1983. Doctors and nurses surrounded him in a tight circle. He was a bloody quiver in their hands, born thirteen and a half weeks too soon and weighing one pound and eleven ounces. They held him with their arms high and outstretched almost as if they were offering him as a sacrifice. They held him ever so gently as if he might break into a thousand pieces or just crumble into dust. His skin was almost translucent. His arms could snap in two like a wishbone. His fingers could break like the point of a pencil. His legs were tissue paper. They knew the odds of his survival were very low. I also knew that if he survived, he would not remotely be the son I imagined. Which is a nicer way of saying he would not remotely be the son I wanted. I had little clue about medicine, but it was irrelevant to the obvious: any baby born so many weeks prematurely, with immediate difficulty breathing, looking the way he did like a weightless feather, would suffer long-term effects.
   Debra and I were married at the time. She had been on bed rest in the hospital for nearly two months. I was on my way to visit her. It was a Saturday. I was dressed in a polo shirt and shorts and loafers without socks. I’d stopped at a convenience store and bought a can of Diet Coke and a bag of chips. I had no idea she would be in labor by the time I arrived. All I wanted to do was drink that can of Diet Coke and eat those chips as I watched Zach glow with blood in the bright bath of lights in the operating room. I felt like eating because I felt like a stranger. I felt I was just there by coincidence, wandering into the wrong room and seeing through the glass a woman I did not know giving birth. None of this made the slightest sense. None of this matched fatherhood. I didn’t feel like crying. I just felt like walking away. And this was only half of what had already happened.
   Another bloody quiver had already been taken from the womb by the time I got there. It was Zach’s twin brother named Gerry. He weighed three ounces more. He had been born three minutes earlier. Because of those three minutes his lungs were more developed than Zach’s. He could not breathe on his own, but there was enough oxygen flowing through him initially to protect his brain from harm. Zach’s lungs were not developed enough to give his brain the oxygen it needed in those crucial first moments.
   Brain damage settled like a patchy mist, some places forever abandoned, and yet some places heightened and magnified. Zach would eventually be able to walk and talk. Remarkably, he would suffer no physical side effects from his birth. He loves to communicate in simple snippets, mostly by asking questions. He can be unwittingly funny because he tells only the truth of his feelings. But his IQ places him on the borderline of mental retardation. Why sugarcoat it? My son is mentally retarded.
   You can boil an egg in three minutes. You can fetch the morning paper in three minutes. You can empty the dishwasher in three minutes. You can reheat the leftovers in three minutes. You can call for Chinese takeout in three minutes. You can eat Chinese takeout in three minutes. You can determine the very course of a life in three minutes.

It was Gerry who was able to breathe on his own after a month. It was Zach who fought for his life in the neonatal intensive care unit, his tiny chest pumping up and down, never at peace, the frantic pulse of wanting to live and the frantic pulse of not wanting to die, always on supplemental oxygen with the green tube taped across his lips so it would not slip from his nostrils. Gerry who left the hospital after two and a half months plump and mirthy. Zach who stayed there for seven and a half months, intubated dozens of times, which like all medical terms has a clinical beauty to it that purposely hides what it really means — shoving a plastic tube down Zach’s trachea into his airways so he could breathe as his tiny body shook with the tearless cries of pain that is equal to that of an adult if not more so. Gerry who made the benchmarks of sitting and standing and walking. Zach who remained tethered to supplemental oxygen for another year and a half after he came home, with the canister always beside the crib and the alarm monitor on in case his breathing and heart rate perilously diminished.
   Gerry went to the fine Quaker private high school in the shadow of the Philadelphia Art Museum and then college. Now he was getting his master’s degree at the University of Pennsylvania Graduate School of Education. Zach went to the private school for children with severe educational handicaps and then the self-contained program at the high school where he learned vocational skills and basic hygiene such as remembering to brush his teeth and use deodorant every day. Gerry deserved all of what he got because of his sheer will to live, and Zach deserved none of it despite his sheer will to live.
   Debra and I threw a graduation party for Zach after he got his high school diploma, a symbolic milestone since he hadn’t fulfilled any of the normal requirements. It was a grand occasion. Nearly a hundred people came from all over the country because he was and always will be truly beloved. I got up from the head table to give a toast. “Today Zach is a high school graduate!” I yelled. The cheers rose into a standing ovation. He received dozens of gifts that night, piled up on a table like a bonfire. He was the epicenter of the galaxy. I wondered if he would ever have a moment like this again since there would be no wedding or birth of a child or golden anniversary. I knew Gerry’s future would include all of that. I knew Zach’s future would always include bagging groceries.