Happiness--A Memoir

by Heather Harpham

  A week earlier, after a walk without hats in which the kids had been badly snowed on, Brian had said, “We don’t deserve these kids.” It was true, we didn’t, because no one does; a child is an unearnable grace. There is no way to deserve or earn a child. But Brian wasn’t being existential. He’d meant that we did not deserve these kids. And this infuriated me precisely because it was partially true. We were artists, easily distracted, epically unorganized. Acting as her medical team seemed a dubious undertaking at best.

  Still. However much we fucked it up, life with these small people moved me beyond words. Their smells, the way they lifted their arms for “uppy” with total confidence that Brian or I would reach down, the velvet of their inner wrists, the translucence of their ears—little shells held up to the light. It was too much to bear. I turned to Brian in bed.

  “We might not deserve them,” I said. “But we cherish them. That must count for something.”

  “You did an amazing job with the chelating thing,” he said.

  “Thanks,” I said. A beat went by. “I don’t want to leave her like this. Do you?”

  Brian didn’t fidget; he didn’t look at me. He stared at the wall. I knew if I waited, he’d say something meaningful. If I interrupted with another question, another accusation, we’d move backward.

  I wanted to push the argument, but at the same time I was scared he’d agree with me. The alternative to a life with the pump was to send her across the street in the group of ten chatty children, each irreplaceable, one of whom would not arrive.

  Our bedroom was on the parlor level. Indigo shapes wavered in the tall windows, shadowy tree wraiths whose branches made fleeting, indistinct hand gestures. If only we could decipher the signs.

  After a while the wind died down and the branches quieted.

  “We’re so lucky to have that tree,” I said, breaking a long silence.

  “We are,” Brian said. He pulled me toward him; I tucked my face into the crook of his neck and inhaled him.

  As much as we were at a loss over what to do with our girl, I was calmed by our essential togetherness.

  If my past self—pregnant and alone—could have glimpsed this moment hovering in the future, she’d have been floored. And surpassingly reassured. But she couldn’t. All I could do for her now was to try and persuade her to let go of her resentments, her grudges, her niggling doubts. To remind her that the father Brian had become—one who offered both kids the full measure of his kindness, patience, playfulness, a near limitless attention to their boring, endless needs—had been embedded in the reluctant father all along. I stroked Brian’s face with the back of my hand.

  “You surprised me.”

  “I surprised you how?”

  “With how much you like being a dad. Does it surprise you?”

  “I wouldn’t really put it that way. It’s more like Gracie kicked down a door and released a tidal wave of love for you. And her. And then Gabe.”

  “Not everyone can accommodate tidal waves of change.”

  “Not everyone waits for it.”

  “I only waited because of your leprechaun dance.”

  “My leprechaun dance?”

  “Remember that time you did that weird little dance, imitating David Letterman imitating a leprechaun?”

  “Oh, yeah.” And I knew he did, because he remembered everything. Every single thing.

  “I thought that any man who wears button-down oxford shirts and believes in political morality and can correctly punctuate nearly any sentence—and who can also do a leprechaun dance—had to be the one.”

  “That’s all it took? Any guy dancing a little jig could have scooped you up?”

  “Any guy who was you.”

  27

  Throughout our time in Brooklyn, Brian’s college roommate, affectionately known in our house as “Stooch,” would periodically urge us to call his ex-wife’s sister, a pediatric transplant doctor down in North Carolina. Though we loved Stooch and knew he meant well, we doubted that the key to Gracie’s well-being lay in contacting Stooch’s ex-wife’s sister. Everyone wants to help. Lots of people point you in different directions.

  We didn’t need another doctor in the mix.

  But Stooch kept bringing it up, and so finally one Sunday we called, mostly to say we’d done it and be done with it. The doctor we reached, Dr. Joanne Kurtzberg, was a total surprise. First of all, she happened to be on vacation when we left a message, but she called us back within an hour. She instantly gave us her pager number and cell. She talked with us for almost an hour. It seemed impossibly generous, someone willing to interrupt their fruity cocktail to chat about HLA tissue matches.

  Brian began Googling and ended up in shock: Kurtzberg ran the Cord Blood Bone Marrow Transplant unit at Duke Medical Center in Durham. Using cord blood was relatively new in 2004, and most of the places we’d consulted with had done fewer than twenty CB transplants. Duke had done over two hundred. Cord blood bone marrow transplants were Dr. Kurtzberg’s frontier, and she was Annie Oakley.

  Dr. Kurtzberg had no doubt whatsoever that Gracie could be cured using Gabriel’s stem cells, especially given that he was “an extended match.” Of the six key markers that must match, Gabriel and Gracie matched all six, and then matched another twelve markers beyond the six. Given such an ideal scenario, Dr. Kurtzberg urged us to transplant Gracie immediately. The fact that this would require us to move to North Carolina for at least six months, likely longer, and that it meant accepting a serious mortality risk right now, didn’t diminish her confidence. She knew she could cure this child and, she implied, it was our duty to let her do it.

  This sent us spinning.

  In contrast to other physicians who’d advised us to wait, who’d emphasized the risks in transplanting younger patients, Dr. Kurtzberg had one clear message: do it now.

  Her perspective was that every blood transfusion Gracie received was weakening her transplant chances, as it weakened her liver with iron overload. The liver is transplant’s hero, the star, the strongman who does the heavy lifting—filtering and disposing of all the toxins from the chemotherapy drugs necessary to prepare the body. Kurtzberg liked to bet on young, healthy livers, the younger and healthier the better. My intuitive sense of what was best for Gracie flowed in the opposite direction. Gracie’s liver was so little; it was barely three. How could such an inexperienced organ be expected to do such a complex, demanding job?

  Talking with Dr. Kurtzberg intensified my confusion to a near frenzy.

  “This is nuts,” I said to Brian. “They all say different things. Who are we supposed to trust?” I was manically chopping onions; crying for nonemotional reasons had become a strange pleasure.

  “Us,” Brian said. “We should trust us.”

  I spun to face him, onion knife in hand, “Why us? Do you have some secret scale we can use to weigh life with medical torment that lasts maybe, maybe, to age twenty-nine against a chance for a cure which might mean she only lives to four?”

  Brian took the knife from my hand and began to chop in my place. Later, as we were falling asleep, he took my hand. “We are the two people who love her more than anyone else on earth. We’re the scale. We’ll decide.”

  In this state of agitation, in constant and unresolved conversation, under the shadow of if, fearing, constantly, that by making no move we were making the wrong move, but equally afraid to act, Brian and I passed out of winter through spring (unnoticed by us) and into summer’s beginning.

  28

  On a Saturday in early June, Kathy and I walked to the Brooklyn Museum. It was hot, and we were desperate for the cool spray that blew off the fountain in front of the museum. As we watched the kids play in the water, I was thinking of whether to tell Kathy about Gracie. We’d been friends for three seasons, and it had been so nice not to tell. To pretend, even to myself, that there was no story. To put on this puppet theater, starring Gracie as a healthy child. Now, though, I wanted Kathy’s counsel.

  I dithe
red until it was time to head home. We each pushed our double strollers toward Webster Place. On the slightest of inclines, we wheezed.We weren’t really young moms; we were just moms with young kids. It was a soft night; the kids were cooling down, drowsing off.

  I took a breath. I was afraid she’d be mad at me for withholding something so big for so long.

  “Kath.”

  She kept walking, pushing uphill, looking toward me. “Yeah?”

  “Kathy.”

  She looked over at me.

  “I’ve been meaning to tell you this thing, but I don’t want to freak you out…”

  “Yeah?”

  “Gracie is sick.”

  “Sick how?”

  I looked down into the strollers; both my kids were sleeping. So was Eden. Only Chloe, redheaded eight-month-old, was awake. “She was born sick,” I said. “She has a blood disease.” We were walking along the edge of Prospect Park, under the deep shade of old trees. Benches lined the sidewalk.

  “Let’s sit,” Kathy said. “The kids won’t wake up.” She handed Chloe a graham cracker. Chloe grasped it in both hands and drew it to her mouth lovingly.

  “She doesn’t make red cells. Or she makes them, but they fall apart before they mature, so she has to get blood transfusions every three or four weeks.”

  Kathy kept looking at me. She didn’t shout, “Are you kidding me? Is this a weird joke?!” She didn’t glaze over. She was quiet and calm and curious. “So what does that mean? Can she do that forever?”

  I explained that people could live into adulthood like that, always getting transfused. But that the problem was every time we gave her blood, we were also giving her iron, and over time that iron would accumulate in her lungs and heart.

  Kathy reached over to Gracie and pulled her sundress over her knees, a protective gesture. A small act of ownership. I wanted to throw my arms around her or burst into tears. But we weren’t like that. Even if we wanted to be sloppy, we would hold ourselves in check. We were the moms now, not the kids.

  “OK,” Kathy said, as if accepting the facts could abrade them, shrink them. “What can you do? What are you going to do?”

  “We can transplant her. That would be a cure. A bone marrow transplant,” I said.

  “A bone marrow transplant?” She looked like someone who’d received an electrical shock; her spine went straight, she lost her air of languor. Her look said, Let’s not lose our heads. Bone marrow transplant is drastic; it is losing one’s head. Every bone marrow transplant is essentially a Hail Mary pass. And still, it was what we had.

  “Isn’t there something else you could try first?” she said. I shook my head.

  “This is our only card,” I said. “We can play it or not play it, but it’s the whole deck.”

  I stood up, pulled my shirt away from my chest. It was still hot, and my skin and brain felt coated and clogged. Kathy stood too, and we walked on subdued. I told her about Gracie’s chelation regime, how we had to pull the iron out of her organs, the little evening clutch of a machine we hooked her up to every night. The conflicting advice we were getting from other doctors in contrast with Dr. Kurtzberg’s confidence, which had a synergistic effect on my fears and determination, making me both more afraid of transplant and more convinced we should do it.

  “When are you going to decide?” Kathy asked, as we turned the corner onto Webster Place. I looked down its length of cheerful pastel Victorians. Some had rockers on the front porch. This was a special block. I reveled in our luck at landing here.

  “I don’t know,” I said. “If Gracie keeps spiking mysterious fevers, and going all rag doll, it might be decided for us.”

  Kathy’s house was first, near the corner, and we paused in front of her door. She reached to hug me. We were busy people, always handing things to each other or to the kids. We didn’t bother with actual hugs very often. But now she held on. Her hair smelled good. I knew she used Pantene, but she smelled like Herbal Essence—which gave me a hopeful, serene feeling.

  “I’m glad you told me,” Kathy said. “I’m not glad it’s true. But I’m glad I know.”

  29

  As we were leaving the house for Gracie’s first blood transfusion of the summer, our neighbors across the street happened to be climbing into their car. Gracie looked at them, waved, then asked, “Are they going to get their blood?”

  Yes, we wanted to say. Instead Brian said, “Probably not, sweetie. Not everyone gets blood.”

  “But when you and mommy were little, you got your blood, right?”

  Brian and I traded a look.

  “Well,” I said, “some people don’t get blood. And other people do, like you.” I was hoping this sounded as if she was not alone in her situation.

  “Who gets blood that we know?”

  We faltered. Why had we not—in anticipation of this question—befriended a few hemophiliacs? Then I remembered accidents. Fabulous, blood-spilling accidents.

  “Uncle Dawa needed blood when he had a crash in the car!” I said.

  “Did he like getting blood?” Gracie said.

  “I’m not sure. Is it fun for you?”

  “No.” She seemed unsure of whether to pity or disdain me. “It’s not fun.”

  We were forever trying to figure out how to talk with Gracie about her sickness. She knew she had it, but she just hadn’t known, until then, that not everyone else had it too. We wanted her to see herself as normal, as essentially fine. But we didn’t want to sell her a story of herself that was untrue.

  As we waited at the hospital for Gracie’s blood to be washed and irradiated, she and Gabriel stacked plastic cubes with realistic beach scenes inside. Each cube contained real sand, mini–palm trees, tiny beach balls that rattled against the clear walls. They fascinated Gracie. She was transfixed by a world miniaturized enough to fit into the palm of her hand. She shook the cubes gently to make the palm fronds sway. While Gracie stacked, Gabe sat beside her, handing her cubes one by one as she built upward. As she placed a block on top, Gracie peered down at Gabe. “Gabe!” she said, as though she’d just remembered to tell him something important. “Guess what? You don’t need blood!” As a reply, he handed her a tiny ocean encased in plastic.

  On the way home, with two pink and sleeping kids in back, I asked Brian to stop at the food co-op. I wanted to run in while he waited with the kids in the car, but Brian resisted. He hadn’t written all weekend. He barely had time to write at all now that he was teaching so much to support us, and he wanted to get home to the keyboard while he still had mental power. He had the jagged energy of an addict deprived of his fix. But we were out of bread, milk, my favorite sharp cheese.

  We negotiated, compromised. “I’ll run in for essentials only,” I said. “Ten minutes. Fifteen tops.”

  Walking around alone—without a person hanging from my hip or arm, without sticky fruit leather fingers in my hair—felt so luxurious. I lingered over the imported olives and popped wasabi almonds from the bulk bins in my mouth, aware that I was over my time limit. After a while, I didn’t care. I decided to get everything we needed, or even wanted, so that I wouldn’t have to come back later in the week.

  When I got back to the car Brian was livid. It had been nothing remotely like fifteen minutes, more like forty. Maybe forty-five. Both kids were still sleeping, but he’d lost his window for writing. He started to say something condemning, but I had been practicing a preemptive counterpunch in the checkout line: “I was shopping for our family,” I said before he could say anything. In my head this phrase had sounded like a moral home run. Who could argue with that? But I’d miscalculated. You can’t slip sloppy moralizing past Brian.

  He’d gotten out of the car to help load the groceries, so we stood face to face. “How noble of you, to shop for our family.” His voice was tight, derisive. As he said this, he bowed, a full-body, bent-knee bow until his forehead touched the concrete.

  “Oh fuck off, Brian,” I said.

  If I’d just said fuck o
ff, without the aggressive casualness of oh or without using his name, that might have been OK. As soon as I said Brian, I knew I’d made a mistake. Saying Brian proclaimed my anger as not only free-floating anxiety, desperation, what-have-you, but as a force I was willing to leverage against him.

  The grocery bags were sitting next to the car. Brian reached into the closest one, grabbed an organic pear, and chucked it over the car, onto Seventh Avenue. “Was that for our family?” he shouted as he threw it. Not at me but over me. He picked up a sourdough baguette and hurled it into the middle of the street. He kept on pitching groceries, one after another, over the car into the road, “What about this? Is this for our family?” A container of organic maple yogurt arced up and over the windshield, splattering where it landed near a storm drain.

  This was Brian as I’d rarely seen him. Not never but hardly ever. He once told me how an old girlfriend described his confrontational style, his fuse, as nice, nice, nice, nice—boom.

  I was trying to gauge how out of control he was. He seemed to be sticking to the soft foods. Nothing was hitting the car, only arcing over it. He was a decent shot, even in a fit of rage. Was he dangerous? He shoved one of the bags out of the way, to reach into another. A glass bottle of juice broke.

  “Get out of here,” I shouted, pointing down the street. “Get away from us.”

  Brian didn’t move. I didn’t move.

  “This is over,” I said, operating on the level of primary risk assessment.

  I grew up watching my mom tolerate a man who flew into rages. A violent man whom she allowed to go on living with her and with me and with my brothers. My small, vulnerable brothers. I didn’t want that. I didn’t want a grocery thrower, even if the groceries weren’t aimed in my direction.

  “This is over,” I said again.