I should have been proud of him. I was proud of him. He dressed as crisply as he could and showed off his ID badge to everyone he knew. But I kept on running. Even in moments when he was happiest and I should have been happiest for him.
IV
Shortly before the cross-country trip, Debra, Lisa, and I went to a surprise birthday party for a woman who organizes social activities for young adults with severe disabilities such as Zach’s. For fifteen dollars an hour, we often hire someone to take him to the mall or go to dinner or the amusement arcade, something to get him out of the house, place him among the Normals. Larger activities are also offered, such as bowling or overnight trips to Hershey Park or the Jersey shore. There seems to be no shortage of clients, the obvious reason that she is creating a social organism for a group of teenagers and adults who have no natural social organism.
There were about a dozen people at the party, the parents around the table with nothing in common but our broken sons and daughters. The forced conviviality masked the anxiety we all felt about what would become of our children who were no longer children, where they would live, how they would live, with whom they would live.
The kids were mostly in their twenties. There was a pool and they played a version of volleyball with a huge purple ball that skipped and skimmed but mostly scudded. They weren’t really interested in the game. What really intrigued them was the arrival of the next guest. A car would pull into the driveway, and they climbed out of the pool en masse, and they half-hopped on tiptoes through the grass like young children in Easter egg hunts. They squealed with joy when they recognized someone they knew. They formed a lifeline to each other.
Someone took a picture of our children that day. They stood just behind the table still filled with red plastic cups and the tube of Gulden’s mustard and the paper plates with remnants of cake and potato chips and half-eaten hot dogs. Some looked at the camera, and some did not. Some had impairments that were more obvious than others. Some were shy, and some were proud. Some looked physically perfect, and some looked imperfect. My son was all the way to the right, dressed in a pair of borrowed swimming trunks, with his arm stretched around the shoulder of the person next to him. Zach’s face was partially obscured, but there was the crinkle of a smile that comes with a sense of total contentment about who you are, no matter who you are.
He was with friends, where he was comfortable and welcomed and loved. He called them “my friends,” because they were the most precious part of his life, his private jewelry box of treasures. He was also surprised and delighted I was there, which made me realize how rare it had become for me to intersect with the real life he lived with his mother and her family. He paraded me around, telling everyone when I arrived that “my dad’s here! My dad’s here!” He loved the party. He knew none of my private thoughts, the sadness in the eyes of all the parents around me that no amount of cheerfulness could conceal. That was my perspective at least. When I suddenly told him that Lisa and I had to leave, his face lost its sparkle.
—Why are you going?
—Somebody is meeting us at the house to do some repairs.
—Is it Steve why is Steve coming now it’s late can’t he come some other time?
—No, he can’t. He’s busy and it’s the only time he can do it.
—Oh.
He looked at me oddly because he knew, in the way he simply knows, that I had just lied to him.
Lisa knew I felt tortured by what I had just done, the ride home from the party stony and silent, the infectious spread of guilt. The next morning, as we lay in bed, we talked.
—I just know I couldn’t wait to get out of there. And maybe it’s my own lack of acceptance. Were you sad last night?
—No, because I accept the situation. And it’s easier for me to accept it because it’s the situation I walked into. I never had the hope that a young couple having babies have, and then your hopes were dashed when you realized you have an impaired child and have that reality to deal with.
—It was much easier when he was younger.
—They go out into the world and people don’t look at them with love and understanding anymore. They look at them as “Boy, they’re kind of creepy.” People find it off-putting, but that says more about normal people than it says about Zach.
As Zach and I cross Pennsylvania, I can’t stop thinking about lying to him at the party.
Why are you going?
Because sometimes I don’t know what else to do.
Why are you going?
Because I have to.
Why are you going?
Because I’m ashamed.
Why are you going?
Because you should be ashamed of me.
V
Zach has crawled into the back seat to try to sleep. The seat is too small for him. He was right; we should have gotten a Cadillac with a wider back seat and a radio that plays only Frank Sinatra and Mel Tormé. His body is crumpled and contorted under a blanket, his head hanging off the edge of the seat like a rock teetering on the edge of a cliff. He somehow manages to fall asleep as we pass the exits for Allegheny Valley and then Pittsburgh. I am alone with the car radio turned low. It’s the midnight-to-five A.M. show about aliens with call-ins. The show is actually kind of interesting because of how convinced these callers are that a flying saucer just landed in their sink with the dishes.
I pull into the Holiday Inn Express in Cranberry about thirty miles from the Ohio border and wake Zach. We are greeted at the front desk by a young man who suffers from the remarkable irritant of congenital perkiness. It isn’t his fault because it’s his job. But it isn’t my fault either that it’s his job. Nobody wants cheer after hours of driving and arriving late. Call me romantic, but after midnight I much prefer motels where you have to yell several times for the clerk, who then comes wandering out of the back room, bleary-eyed and mildly annoyed, with his shirt untucked, takes your credit card, and hands you your room key, all without a word.
How are you tonight, sir?
I have driven over three hundred miles by myself. I have about three thousand to go. Zach and I have already run out of conversation.
How were your travels today, sir?
I have to drive 450 miles tomorrow through Ohio and Indiana to get to Chicago. I am pretty sure Zach doesn’t want to be on this trip. I’m not even sure if I want to. The cross-country romance is dissolving into reality. Two weeks with Zach is a very long time. I am tired.
Make sure you try the free breakfast, sir!
Please, just give me the fucking room key.
We empty the bags from the minivan. Zach handles his suitcase and his knapsack easily, while I struggle with my four bags. The camera bag keeps slipping off my shoulder. Zach gives me a wide berth: he knows I could blow at any second.
We have adjoining rooms. Zach acts like he’s just been released from prison. He touches the bed with his fingers spread wide. He peers into the closet. He pokes his head in to examine the bathroom.
There is a common door between the two rooms. It automatically locks when you close it, and I warn Zach.
—If you come into my room, leave the door open. Otherwise it will lock and you can’t get back into your room.
—Yeah.
—It’s a pain in the ass if it locks.
—Yeah.
I go through the open door into my room. I come back into Zach’s room, and I close the door. We both realize instantly . . .
—I just locked myself out of my room.
—I’m sorry Dad.
—I can’t believe I just fucking did this.
4. Is That All There Is?
I
WE WAKE UP. We dress. We eat the free continental breakfast out of fear of the desk clerk. Zach finds a computer in the lobby and checks his e-mail. His roster of contacts is impressive and ever-expanding. It is one of the reasons he compulsively collects business cards, to find e-mail addresses. If that doesn’t work, he takes to the Internet with relentlessne
ss. He has taught himself to search exhaustively, part of his intrinsic process, as Oliver Sacks has said, to make himself whole and connected to the universe of people he likes. Because of his prodigious memory he often knows more about their lives than they do themselves. Waiting for the train one day, Zach saw a reporter for the Philadelphia Inquirer he had befriended. He asked him why he was there: it was his day off. Zach was right. The reporter went home.
Some e-mail exchanges continue for months or longer, until Zach cuts them off abruptly and without warning. A few gently ask if I can find out what happened, maybe get them reinstated. I feel like the father of the maitre d’ at a hot new restaurant, whom friends ask for reservations because of my perceived pull. I have none.
He doesn’t even let me read what he writes. I’ve only seen a small sampling that a few of his correspondents occasionally share with me. He writes in caps and always asks questions. Punctuation is optional.
DEAR ART WHEN CAN WE GO FLYING IN YOUR PLANE AGAIN HAVE YOU EVER BEEN UP TO NANTUCKET MEMORIAL AIRPORT OR TO THE NEW BEDFORD MASS AIRPORT OR TO THE HYANNIS AIRPORT
DEAR STEVE WHAT COLOR SHIRT PANTS SHOES TIE ARE YOU WEARING TODAY AND IM GOOD BY THE WAY AND WHEN ARE YOU TRAVELING NEXT FOR WORK AND WHO HAVE YOU TALKED TO FROM THE INQUIRER THESE DAYS AND DO YOU EVER TALK TO VERNON LOEB OR BILL MARIMOW OR MIKE LEARY OR PAUL MOORE OR TO JONATHAN NEUMANN
DEAR KEVIN HAPPY HAPPY BIRTHDAY AND BEST WISHES LOVE ZACH WHAT DID YOU GET FOR YOUR BIRTHDAY AND WHAT ARE YOU DOING FOR YOUR BIRTHDAY DINNER TONIGHT
I try to take a peek at his current roster. He shuts down the computer.
—How come you never let me look at your e-mails?
—I don’t know because I don’t.
—You like to keep them private?
—Yeah.
—They should be private. You’re an adult now.
—Yeah.
—Are you happy?
—Yeah.
—Are you sad?
—I’m good.
—Did you have any dreams last night?
—No.
—Do you ever dream?
—No.
—Are you having a good time?
—Pretty good.
We find the minivan in the parking lot and climb inside. I still feel slightly blurry from driving the night before but I am determined to be upbeat.
—Ready for takeoff, captain.
—Yeah where are we going?
—Chicago, Chicago, a helluva town, a helluva town.
I repeat the chorus. I repeat it again, hoping in vain that Zach will sing along with me, just as I am hoping in vain that I will rejuvenate. I can’t get out of the parking lot. I take lefts when I should be taking rights. Arrows only take me in circles. We have not driven one one-hundredth of a mile yet today.
—WHAT THE FUCK IS THIS? HOW THE FUCK DO YOU GET OUT OF HERE?
—There’s an entrance over here yeah yeah here’s the entrance.
Zach guides me like a Good Samaritan helping a blind man cross the street.
—Sorry, Zach. I shouldn’t have gotten mad like that.
—Yeah.
—I love you, Zach.
—I did good didn’t I Dad I helped you get out because the parking lot was you know you know Dad it was kind of hard to get out of.
—That’s because your father’s a moron.
—Yeah.
Up ahead a sign proclaims WELCOME TO OHIO! An opportunity to make amends. I will yell the word Ohio with the ending slightly varied so Zach can correct me. We started playing this game sixteen years ago when he was eight, much like the rite of cuddies. He always finds it an invigorating dose of concreteness and reacts with uproarious laughter. His giggles are like hiccups at first, intermittent and inconsistent, then they start peeling off in rolls if I seize on a word that particularly strikes him. I have tired of this, just like I have tired of cuddies, but I feel repentance is necessary for the parking lot crackup. I must do a better job of controlling emotions.
I won’t.
Let the games begin:
—WELCOME TO OHIEE!
He gleefully responds.
—WELCOME TO OHIO!
Now it’s war.
—OHIEE!
—OHIO!
—OHIEE!
—OHIO!
—That’s enough!
Zach’s voice goes soft. But he persists.
—It’s Ohio not Ohiee.
—I know, Zach.
He persists.
—It’s Ohio not Ohiee.
—What did I just say? That’s enough!
His laughter stops. I go quiet with my own duplicity. I am the one who always starts the game and then turns it off because I can no longer stand it because of the feeling of perpetual stasis. Then the guilt.
—You’re right. It is Ohio.
—Ohio.
—Yes, Zach, Ohio.
The fun has been drained out of the minivan. About seventy-five miles outside of Cleveland, Zach pulls out the Rand McNally road atlas and turns to page 91. He traces the blue line of the Ohio Turnpike in the northern tier of the state with his forefinger. The finger moves past the old iron and coal port of Ashtabula, and the Geneva-on-the-Lake amusement park with bumper boats and batting cages, and Conneaut with the four covered bridges that are always part of the annual Ashtabula County Covered Bridge Festival each fall. He notes that we are closer to Akron than we are to Cleveland. The car floods with nothingness.
I slip a disc into the CD player: Peggy Lee’s “Is That All There Is?” She sings in a melancholic, tuneless voice, the music simple except for some odd circuslike refrain in the middle with noxious calliopes. It is the kind of song that the Sex Pistols would have covered with more cheer. Or Frank Sinatra in some detached croon as destructive as his rendition of “MacArthur Park.” Here comes the famous refrain.
Is that all there is / If that’s all there is my friends . . .
—What does it mean to you, Zach?
—What?
—When she says that’s all there is my friend.
I rarely ask Zach to give his interpretation of something. It makes him nervous. His hard drive stores information only. But I vowed on this trip to probe Zach’s mind, find what is there, what is not there, and what never can be. He considers the question. He starts to answer. He stops. He answers.
—That’s life I guess.
For the first time I wonder if he understands on some level what he and I have been through to get here. His birth and near death, my two divorces and broken engagement. All our moving around. An ongoing earthquake of adjustment for somebody who craves stability and hates change.
That’s life I guess.
I guess it is. I guess it was.
II
There is no way for a couple married a little over two years to have twins born thirteen and a half weeks prematurely, each weighing less than two pounds, and not crumble. All marriages go through a tectonic shift when a child is born. But there generally isn’t constant fear if it is a term pregnancy. There isn’t the reality that at any second your baby can die, those noble breaths not enough to outpace death. No matter how good the outcome, you can never ever get over what has happened. You may try to block it out as I have tried to do for much of my life. But you can’t. You will still have flashbacks. You will still hear the alarms of the monitors. You will never forget holding your child with what seemed like a thousand different wires attached to him to record all the different vital signs: move an inch too far and all the connectors dislodged and the nurses came running. You will never forget the look on your child’s face, beseeching you to please, please get me the hell out of here or at the very least to please, please just leave me alone. You will remember the helplessness, which was even worse than the fear, because you could do nothing but watch and wait.
It felt after several months as if Zach would never get out of the neonatal intensive care unit. He would gain momentum. A steady breathing rate. Then his chest started heaving up
and down, so frantically gasping for breath you could see the exhaustion on his face, a natural act we so take for granted, breathing, not natural at all in his case, only depleting him. He would have to be re-intubated.
Neonatologists were vigilant. The nurses were even better, as much psychologists as highly skilled technicians. They exuded optimism. They never showed fear. They became friends you could laugh with and cry with. They offered eternal hope whether they believed it or not. But the isolettes still reminded me of being in the hole of solitary confinement but without any infraction of the rules. One day a baby would be there. The next day he or she would be gone without a word, because there was no need for words; everybody knew what happened. The isolette, padded with a new white blanket, awaited its next inmate. The parents dressed in the blue medical gowns, who had kept silent vigil hour after hour, vanished along with their infants. But, as routine as heartbreak was in the neonatal unit, it was a vast improvement over the hellish conditions that surrounded premature babies a century ago.
III
You may talk, ladies and gentlemen, you may cough. They will not hear you. They do not even know you are here . . . Now this little baby came in nine days ago. It weighed only one pound eleven ounces and we were afraid we might be too late. It was even bluer than that little fellow over there in the other incubator . . . Yes, ma’am, it was
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