Read Operating Instructions: A Journal of My Son's First Year Page 17


  JULY 1

  I just got off the phone with Pammy. It is almost 11:00 at night. As usual she wanted to hear every detail of our day, even though it was so late and she was tired. She’s so nauseated that it’s like a sweet form of chemo—a benevolent drug—for her to hear about Sam, in the flush and fullness of his babyhood, growing up. I had so much to tell her tonight, Sam had such a busy day, and Pammy understands as well as anyone alive what a miracle it is that life keeps making itself anew and flourishing and that we can all tap into it.

  He had his first informal communion today, his first cheeseburger, and his first black eye. To begin backwards, tonight at the Smiths he had climbed up the wooden steps that go from their kitchen to the bedrooms. He and Big Sam were playing at the top of them, and all of a sudden he tumbled and fell all the way down, bouncing like a rubber baby. All of us were moving in slow motion, like we were underwater, to catch him, but couldn’t, and he ended up at the bottom of the stairs having hit his eye on a corner. He cried, I cried, Big Sam cried. I absolutely knew in those first few seconds that he had a spinal cord injury and that his head was going to swell up with fluids like a medicine ball. It turned out that he was just fine. He was a little shaken up for a few minutes, and he started to get a shiner right away, but then of course he was ready to bolt right back up the stairs.

  After church we stopped for lunch at a hamburger joint and split a cheeseburger. I tore his half into little pieces, and he ate almost the whole thing. There were some grilled onions stuck to his pieces, and mustard, and he ended up with this meaty, oniony, primordial manly breath. It was startling, like cigarettes on a nun’s breath.

  Earlier, during the service at church, when the bread and the tiny glasses of grape juice were passed to me, I gave Sam a bit of both. “Honey,” I whispered to him, “this is the bread of heaven, and this is the blood,” and he gobbled them both down and then burped, all but patting his big beer belly afterward.

  JULY 7

  It’s been a hard day to get through, and we wouldn’t have made it without Megan. She actually ministers to us, cooking me little treats, arranging for Sam to hand me a small bouquet of wildflowers when they come in from their walk. I was depressed all day, though. The good thing is that I have been sober four years today. I told Sam this while he was nursing tonight and described what it used to be like. He hung on my every word. I have such a terribly checkered past. I am certainly not Donna Reed. I shouldn’t even be alive. It’s a small miracle. I sang him a talking-blues version of the Beatles’ song “The Long and Winding Road.” I sang to him about the long and winding road that had led to his door. I opened it and there he was, looking at me with those huge brown headlights of his.

  Pammy is tired but otherwise doing okay with the chemo. She is so calm and spirited and optimistic, and I am such a mess. She told me a story a long time ago of being in Paris with her husband, driving around and around the Left Bank trying to hook up with a new friend, but she and her husband kept getting completely turned around. They were hot and frustrated and hopeless. So finally Pammy got out of the car and went into a café. She was so burnt she couldn’t even try to speak French, so in English she said to the maître d’, “We’re lost,” and he said in barely understandable English, “You are not lost; you are right here.” I try to remind myself of that every few days.

  Sam has this one pose Pammy just adores, where he gets up on one knee and balances there, thoughtfully but with some confusion, like someone has just pulled a fast one and it is just beginning to dawn on him. She says it’s very pre-Rodin; The Sucker.

  She wants to get well so she and her husband can adopt. Sam has been her training baby. She hasn’t cried very often since the diagnosis. I cry intermittently, like a summer rain. I don’t feel racked by the crying; in fact, it hydrates me. Then rage wells up in me, and I want to take a crowbar to all the cars in the neighborhood.

  Sam works so hard. He’s so physical and alert and patient. His concentration is great, and he’s got this fabulous sly and flirty look that renders you helpless, turns you to total mush. But sometimes he’s also very willful. Other times he can’t stop whining and clinging to me like some horrible horny Pekingese. It’s hard. He’s teething and uncomfortable and needy and looks like the inside of my soul when I first found out that Pammy was sick.

  JULY 15

  Whenever Sam does anything new or especially funny, my first thought is, Oh, Pammy will love this. Then she does. She does not laugh like a sick person, she laughs like she’s always laughed. She came over this afternoon and almost immediately started to fall asleep on the couch. Sam stood holding himself up by her pant leg, waving goodnight to her. It may have been a coincidence. He can wave now, baby-style, hinging his fingers up and down over his palm. It’s really more than either Pammy or I can handle. What next? I asked her. Juggling? Calligraphy?

  He eats almost anything now. He took a nice fat ripe plum today and plowed into it like a gorilla, with buckets of juice and saliva pouring forth everywhere. Then he let the red skin emerge slowly from his mouth, like a rejected dollar bill from a change machine.

  He has a slow, sexy smile. It just makes you crazy.

  JULY 21

  Pammy and her husband have gone away for a week, up the coast. Whenever we’re apart, I’m afraid I will never see her again. She and her husband want to be by the ocean for a while, away from the phone, to sleep and just be together alone. Part of me thinks, How can she bear to be away from me, even for a day? A small bad part of me is glad to get a week off, too.

  Sam is finally getting a second tooth. He’s had that one huge snaggletooth way over on the side for so long. He’s still not walking, but he holds onto couches and legs and dances to beat the band. He can entertain himself happily for twenty minutes at a stretch with coffee cans, paper bags, etc. I can see that he won’t need me much longer.

  His kissing has definitely changed. In the old days, up until last week, he’d graze you with his lips and flutter his eyelids on your face. Pammy always said he was gracing you. Now he gets a real lip lock on your cheek or mouth, like an eel. It’s like kissing Elvis.

  JULY 29

  Pammy is back, and some of her strength is returning. There is color in her face again. We spent most of the day playing in her garden, watching Sam careen around, seemingly stoned on acid, gaping at butterflies and each dead leaf as if they were bejeweled.

  He can growl now. Pammy kept growling at him, and he would growl back at her in this sexy, throaty way. It’s not at all like a dog. Pammy compared it to Peter Boyle in Young Frankenstein, especially when he’s in bed with Madeline Kahn at the end, lying there reading the Wall Street Journal She lies beside him, saying in that amazing Madeline Kahn voice, “Daddy this and Daddy that and I put two hampers in the bathroom, one for your regular clothes, and one for the poo-poo undies,” and the Peter Boyle monster responds with these low throaty growls without looking up from his paper. Pammy was right: that’s very close to what Sam sounds like.

  I can’t remember her ever having been so entirely happy. For twenty-five years now we have been so black-humored and cynical. There wasn’t any of that today. It was so clean and bright, like all the dross had been scoured off. We sat on the grass in chaise longues, both of us in dark glasses and sun hats, Pammy growling at Sam, Sam growling back, me wiping my eyes. “Today I don’t really care what happens,” she said. “I’m just so glad to be here for this.”

  AUGUST 8

  It’s hard to keep up with this journal. It’s all I can do to keep the two of us together and to get enough writing done to make a living and to keep the house from looking like something out of God’s Little Acre. We’re totally nouveau white trash. There are actually broken appliances out on the porch now.

  I don’t think I can climb up the steps here much longer. There are about fifty of them, beautiful stone steps, but Sam is so big and heavy that trying to lug him and our groceries up them all the time is wearing me down. We need a bigger ho
use on flatter ground.

  My friend Ethan made me this wooden box about a foot high so I can do aerobic stepping—you get on and off it about two thousand times while listening to rock and roll, and you get sweaty and out of breath after about five minutes, but you make yourself do it for twenty. Everyone’s doing it. It’s the most now and happening form of exercise, although my personal belief is that thin smooth thighs do not necessarily speak of a rich inner life. So anyway, I had my step out on the porch with my broken appliances, and I was wearing a Walkman and listening to the Everly Brothers and sweating, when suddenly the Sears repair man appeared at the foot of the stairs. He was here to fix our upstairs neighbors’ refrigerator, and as he trudged, panting, up the steep stone steps, he watched me get on and off my wooden step, and finally when he was close enough, he said, “I would not think you would need to do that, living here.”

  It was incredibly embarrassing.

  AUGUST 9

  Sam’s still not walking, but he’s finally getting lots of teeth all at once. When he bares his teeth at you in a smile, he looks a little like Martha Raye.

  He’s psychotically active, lovely, and social. Also, terribly willful. He makes a sharp cry when crossed, a string of sharp, vaguely Japanese sounds. Pammy calls it baby Tourette’s.

  He really loves music. Dudu and Rex are convinced he is a musical prodigy because he does his Michael Jackson dance routines to the operas they are always watching on PBS. I tell them that he is way behind schedule, that Mozart had already written symphonies by this age, but the three of them look at me with wounded defiance, like I am a cultural Philistine.

  He does love music, though. He climbs in and out of the living room closet where I have a guitar on the floor, and he picks and strums it endlessly while babbling away. I call out requests to him—I say, “Hey, babe, do you know anything by Bob Dylan? Trini Lopez? Bobby Vee?” and sometimes he stops and appears to think about it for a minute. Then he’ll launch into a heavy-metal version of “Lemon Tree,” or sometimes “Jamaica Farewell.”

  • • •

  In the morning, when he first wakes up and looks at me, it’s with such joy and amazement that it’s like someone had told him, before he went to sleep, that I had died.

  AUGUST 10

  Sam is learning to drink from a cup, but it is not going very well. Mostly he plunges his hand into glasses of water or juice, as if he has just had a sudden bout of Infant Hot Hand, as if steam will rise. He sloshes his hand around in the cup until the pain passes, and then every so often takes a tiny sip before plunging his hand back in. Then he hands the cup to you, and you are expected to take a sip, and it is clear by the look in his eyes that it will be a major emotional setback for him if you don’t.

  Sam and I took Pammy to the doctor in the afternoon. We are always expecting the doctor to say that mistakes were made and that Pammy is actually just fine, but what she said is that they are trying to control the cancer, that she doesn’t think it can be cured per se, because it is too aggressive a strain and there were too many lymph nodes involved. Pammy didn’t cry, and of course, in the car, I did. “Look,” she said, “we’ve pretty much known that all along,” and I hung my head and said, “I know,” but when I got home I felt like I might go crazy with frustration. I cannot remember having such a huge rage inside me. I called Steve and cried, and he came up with a pizza for dinner. He did all these wonderful little errands around the house, fixing things, cleaning important windows. I felt like I could breathe again; I thought about how great it would be for Pammy—and how happy it would make me—if I went to her house and did the same sorts of things for her that Steve was doing for me. I ended up feeling just fine, against all odds. I thought, Boy, was that nutty old Mother Teresa right when she said that none of us can do great things, but that we can do small things with great love.

  AUGUST 11

  Last night was Peg’s birthday, and Emmy and Bill had us to dinner. There was corn on the cob, which Sam loves because it’s such a good teething product. So all of us were sitting around the table in the dining room eating dessert, having dumped all the chicken bones and corncobs into a garbage bag in the kitchen. Sam was scooting around the kitchen in his walker and got into the garbage and was playing with it, but Emmy said, “Let it go—whatever makes the little darling happy,” because he’d been sort of fussy throughout dinner. The door of the dishwasher was open, and it turned out later that Sam had rather neatly stacked all the chicken bones and corncobs inside it. I said to Megan today, “He’s so brilliant—he’s trying to get the garbage clean,” and she said, “Well, he is a Virgo.”

  Pammy and I still try on a daily basis to turn him against the Republicans. Pammy told him the other day while we were watching the news that Bush is a right-wing spider sack of lies and meanness, that he’s the same kind of nightmare person as the dummy that comes to life in “The Twilight Zone.” All that’s missing, she said, is a little bit too much rouge on his cheeks and glycerin madness in his eyes. Then I told Sam that I fear Bush is secretly beginning to decompensate and one of these days will appear on the White House lawn covered with fingerpaints and breakfast foods, carrying an AK-47 and quoting from Mary Baker Eddy. They’ll have to haul him off and pop him into the bin for a few years.

  One thing that drives me crazy is when strangers ask, “How old is he?” and then, because they’re stupid, go ahead and guess nine months, although he’s very tall for his age. I tell them that he’s almost a year old, and they can never admit that they were so far off, so they say, “Oh, he’s small then, isn’t he?” like he’s a little peanut, like he’s going to be Hervé Villechaize when he grows up, out on the lawn staring at the sky, crying, “Da plane, Boss, da plane!”

  AUGUST 13

  Today Sam and I went to the convalescent home, where my congregation conducts a worship service once a month. There was this new woman there, about eighty years old, and I went up to her wheelchair to say hi and to introduce her to Sam. The people at the home usually gape at Sam as if I’ve brought Jesus into the room with me. But this woman looked at him angrily and said, “Is that a dog?” And I said, “No, it’s a baby.” And she said meanly, “What kind of baby?” I tried to be Mother Teresa and to see Jesus in the distressing guise of the poor and incontinent, but I secretly wanted to push her wheelchair over and then kick her in the head.

  AUGUST 20

  Pammy’s very sick from the latest round of chemo. My heart is broken.

  I got a little bit interested in another man this week and sort of wanted to pursue it, to have someone to hold me and to be in love with, someone to do the big oompus-boompus with every few hours, but how can you go dancing under the fruit trees when someone like Pammy is so sick?

  I feel sometimes that I let up and relaxed too much and that’s why Pammy got sick. I got too tired and wasn’t vigilant enough, so the flies got in through the window. This is infantile, but it keeps crossing my mind. It’s like when Dylan Thomas came to America on an ancient propeller plane from London, and he said something like “I’m exhausted from trying to hold the plane up in the air.”

  I feel that the exhaustion and constant fear about Pammy make me like some little animal who lives on the ocean floor, who has an ink sack in its body, like a squid, that it’s supposed to use for self-protection. But in my case, left to my own devices, I panic, and end up ink-jetting myself.

  AUGUST 24

  Stop the presses. This just in: Sam walked last night at his Big Brother Brian and Diane’s. They’d been taking care of him while I was at Cirque du Soleil, and they took him to a park for a picnic dinner. Diane pointed out a little girl who was smaller and younger than Sam but who was already walking and who had more teeth, and Diane said she really rubbed it in. An hour later, after I had arrived, Sam was leaning against the coffee table and let go, like he’s done before, but then he walked three or four steps to me. We all went crazy. We just lost our minds. He looked mildly pleased. Then he did it a few more times. All the Smi
ths stopped by this morning, and he did it a few times again for them—four, five, six steps, looking absolutely wild in the eyes and triumphant the whole time.

  By the afternoon he had forgotten how, and I went back to thinking that he would need leg braces and be one of Jerry’s kids. At Rex and Dudu’s tonight, though, he did it again, and again, and again. I can’t really put my feelings about it into words. It’s like breathing in cold clean mountain air and holding it for a little too long.

  AUGUST 29

  It’s Sam’s birthday today. He is one year old, my little walking dude. We had a little birthday dinner at Dudu and Rex’s. Uncle Steve stopped by. There is a big party planned for the weekend at my Uncle Millard and Aunt Pat’s. Absolutely everybody who is anybody will be there. I may hire the Blue Angels—the Air Force Precision Flyers—to buzz the house a couple of times.

  He says “heeeee” for kitty—for our kitty and for all cats everywhere. He’s very bright; he gets that from me. He can climb anything, and it is obvious that he is having huge testosterone surges. I still look at him and think, Where did you come from, little boy? How did you find your way?

  I’ve been thinking about his birth all day, of walking to the drive-in with Pammy, of the male doctor at Kaiser who said the baby was flat. I remember walking down the corridor at Kaiser on the way out to Pammy’s car, totally pissed off that there was not a room for me, and how really awful I felt and how much the contractions hurt. Pammy asked a nurse if I could get a Valium or something, and they looked at her like she was Jim Morrison. I thought about the ride over to Mount Zion in her car, which is this twenty-year-old Mercedes of her late mother’s that we used to drive around in high school. I was bellowing “Fuuuuuuuuuck” at the top of my lungs. I kept remembering today the blood Pammy said looked like just a little crankcase oil down the back of my dress, of Carol, the angelic but no-nonsense resident who delivered Sam, and the nurses who’d read my books, and how deeply and quickly Pammy and Steve and I bonded with all of them. Pammy said later she felt like she’d even bonded with the equipment in that room; part of her wanted to take home the little stainless steel tray with the delivery intruments on it. I was remembering the magic of the epidural—the anesthesiologist’s name was Merlin—and the long day on the monitor, with Pammy and Steve on either side of me, and then all the troubles. I can remember the feel of the sheets, warm from the dryer, on my body, and how hard I was shivering, and what despair I was feeling, and then Sam was born, purple as an eggplant, with his umbilical cord wrapped around his neck, but alive.