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.