“Are you going to take off your shoes?” I’d asked, laughing, hoping it was a joke.
“What do you mean?” he said. “Why?”
It seemed to me that if you were a person who would walk across the sands of a California beach on a beautiful day, wearing office shoes, then you must be alienated from your true nature. It didn’t occur to me that Brian was in fact being himself: an Upper West Side Jewish intellectual, at the beach. It wasn’t that he didn’t want to be there; it was that he had to be there as who he was.
The first time we ever sat in a room together, alone, in his cramped office at NYU, Brian asked me what I had planned for the summer. I told him I’d applied for a writer’s residency in Maine.
“Maine,” he said derisively, “what’s there?”
“Nature,” I said. “You’ve heard of nature?” I gestured out the window to his view—a solid brick wall. “What’s there?”
He glanced outside. “Every one of those bricks reflects human intention.”
At the little beach on Bolinas Bay, I slipped off Gracie’s sandals; she clung to me, refusing to touch her feet to the sand. Sand, from her vantage point, was unknown, unstable, and strange. I walked half a mile along the shore, trying to set her down from time to time; each attempt ended with her clinging to my shirt, trying to climb me, always trying to climb me, to get away from the perceived threats of her world.
“Don’t force her,” Brian said. “Let her figure it out.”
I took her to the edge of the lagoon and crouched down so she could, while perched on my knees, lean over to play in the water’s wake. Brian squatted down beside us, picked up a sand dollar, and showed it to Gracie. He didn’t say, “Look, a sand dollar!” just handed it to her. She turned it over and considered its smooth round shape, shook it. The sand inside rattled. She put it in her mouth. We offered her a cracker as an alternative. She threw the cracker into the water and laughed. After a few minutes she touched a toe down on the wet sand; it yielded to her weight. She lifted her toe back up again and put an arm around Brian, an arm around me, swinging from our necks, feet above the sand. “Look at the birds,” I said, spotting a few sandpipers skittering away from the tide.
“Dey go!” she laughed. “Dey go!”
Driving home, Brian and I were quiet, waiting for her to fall asleep. When we heard the deep metronome of her breath, he said, “This is good. We’re onto something.” I smiled at him, silent. Feigning mystery, feigning elusiveness, but we both knew he was right.
If I wanted to have children with anyone, he’d said, it would be with you.
And now she existed. But our world still rested on the slender shoulders of two letters. If. If we could count on her to go on being her.
13
We were still trying to solidify our gains, to feel fully back together, when Brian’s mom, Tasha, arrived. This visit could go either way. Mothers-in-law can be a force of division—but maybe they could also be uniting, the way Democrats and Republicans cozy up under external threats. I was leery that it was too soon; we weren’t ready. But she wanted to come, and she was unaccustomed to accepting no. She’d spent fifty years as an educator, fighting first to racially integrate the schools of Teaneck, New Jersey, and later to introduce progressive education principles into a closed-minded system; she does not suffer fools.
In the days before Gracie, she and I had a mostly nice relationship. Then, when I’d been pregnant on my own, Tasha had reached around Brian to contact me, to let me know that whatever role he decided to take on, she was this child’s grandmother. Which had meant a great deal. But still, any conversation with her had the potential to ignite. She had strong opinions on virtually every subject, from child-care methods to whether or not one should shop at Trader Joe’s (first no, later yes). And she was a fighter by nature; she’d been on her own from the age of sixteen. Now, she was almost eighty. I thought, how complicated can a visit from a little eighty-year-old lady be?
Tasha arrived upbeat and ready for action, bearing, as was her wont, a million gifts that we did not want: clans of Tupperware, rolls of tinfoil, tiny egg cups. They spilled out of her suitcase, which she opened in the middle of our living room. Brian had procrastinated telling her she’d be staying at a hotel. We’d booked a room at a place a few miles away. It was clean and nice, had free breakfasts and a pool.
When Brian finally told her, as she opened her bag, Tasha balked. It was her right, from her point of view, to stay under the same roof as her granddaughter, earned by many hours of hard flying and ordained by Jewish mothers everywhere. But we didn’t feel up to having her. We had a sleeper sofa in the living room, true, but we didn’t want anyone on it.
That first night, in protest, Tasha slept in our car. She would rather cramp up in the Volvo than check into the Marriott. The next day I sat with her on the couch and tried to understand her, and to help her understand us. I started by saying that we didn’t want her to sleep in our car again, and that if she was going to sleep in the car then she should come on inside the house. But that we’d really appreciate it if she’d try the hotel. Please. Just try. And, shockingly, she did.
Later, in bed, Brian said, “You are a magician.”
“I am?”
“You worked magic on Tasha Morton.”
The rest of her visit was mostly sweet. We drove around the Bay Area pointing at landmarks we didn’t have the energy to get out and look at. From the car we oohed and aaahed. And that was fine with Tasha, who, anyway, only had eyes for Gracie.
When Gracie asked for water with a gesture and her secret word, nangi, Tasha said, with genuine grandmotherly pride, “She obviously gets her intelligence from Dick.” Brian’s dad.
Though he would never meet her, Dick had provided at least a quarter of the genetic material that comprised this particular girl. It moved me that Tasha, who’d been living as a widow for over twenty years, still wore her wedding ring. And that she’d claimed a little of Gracie in Dick’s name.
14
“Have you considered having another child?” Dr. Koerper shifted in her seat.
Brian and I stared at her. When you have one sick baby, the absolute last thing in the world you want is another sick baby.
“Listen,” Dr. Koerper continued, undaunted, “Amelia-Grace could be cured.” Full stop. “With a bone marrow transplant. The first step is to find a donor. The better the match, the higher the success rate. A sibling match is best. Kids with a sibling match have the highest rates of survival.”
A sibling match? Survival rates? She seemed to be speaking in tongues.
“We don’t know what is broken, but if we take out the old engine and replace it with a new engine, the car will run.”
“The car will run?” Brian said, making her analogy sound as banal and useless as it was inscrutable. I gave him a murderous look.
“The transplant gives her a new engine, new bone marrow. Gracie is the car,” Dr. Koerper said.
After a year and a half of constant blood transfusions, after a year and a half of false hope and wrong turns, Dr. Koerper had finally stopped promising that this undiagnosable disease would spontaneously resolve. She was admitting defeat: the disease was not going to get any better. Gracie would continue to require blood transfusions for the rest of her life. Unless … we could eradicate the disease. Cure her. We could make her better.
“Amelia-Grace can be cured with a transplant,” she said. “I can refer you to the pediatric transplant team here for a consultation.”
Brian looked stricken. “A bone marrow transplant,” he said. “That sounds like an extreme solution to a problem we haven’t even defined yet.” His tone, as he said the words bone marrow transplant, made it sound like a terrible thing to do to a child, like leaving Gracie by the side of the road with nothing but a cardboard sign that read “Toledo” and a warm can of Dr. Pepper. I, on the other hand, only heard cured.
I squeezed Brian’s knee, momentarily euphoric, until I remembered that this undertakin
g, outlined by Dr. Koerper, rested on the premise of having another baby.
Out of the question.
Dr. Koerper knew our history; she’d been Amelia-Grace’s doctor before our reconciliation. I’d had the vague impression that she was pulling for us as a couple, but surely this had nothing to do with that. Surely she was in earnest.
“But,” Brian said, “we’ve assumed that having another baby would risk having another sick baby.”
Dr. Koerper was quiet for a beat. Was this little hitch in the plan only now occurring to her? “Since we haven’t been able to diagnose Amelia-Grace, it is true that we can’t give you reliable odds on your chances of having a child with the same disease,” she said. “But think it over. She’d never need another blood transfusion; she’d be cured. And you could go back to being a normal family.”
I suppressed a snort. Back?
My thoughts flew in confused circles, tangling and looping through each other, doubling back. How could we put our daughter into a situation with published survival rates? I didn’t want a transplant for my child, or anyone else’s. But I also didn’t want to have a very sick kid who grew into a very sick adult, if we were lucky.
The one question I’d been afraid to ask, and had put off asking while we searched for a diagnosis, was no longer avoidable.
I made my whole body still and took a breath. “If she doesn’t get better, if she needs lifelong transfusions, what are those survival rates?”
“I don’t like to give those kinds of statistics,” Dr. Koerper said. “People become very attached to the numbers.”
“Please,” I said, “we know they are just numbers.”
Dr. Koerper looked from me to Brian and back again. “Transfusion-dependent patients, in the last available data, have a fifty percent chance of reaching the age of thirty.”
I thought I might slap her; one sharp blow to bring her to her senses.
“OK,” I said. “We’ll be in touch.” I gathered my purse, Brian stood up and took my hand. I knew without looking at his face that he would be tight-lipped, foreboding, knew he shared my view that Dr. Koerper’s statistics were unnecessarily hostile. Never mind that I’d pressed, almost begged for them. How dare she say that out loud.
I wanted to be with Gracie, immediately. I needed to touch her pudgy hands and smell her thin, silky hair, to inhale her sweet toddler breath. When we got to the lobby we found my mom alternately reading People magazine and watching Gracie cruise around the perimeter of chairs. Gracie was wearing a summer dress with giant pink and orange flowers. As she moved, the hem kept riding up; her small legs, plump and strong, propelled her around the lobby at top speed. What kind of creepy statisticians would bet against such a girl?
I chased her and kissed her and smelled her. She squirmed to get down, as if I’d interrupted her at work. I wanted to whisper in her ear, “You will be thirty. And then forty, fifty, sixty, seventy, eighty. You will be ninety and then a hundred. You will be so old and so decrepit, you’ll be baggy with age and decay. Doesn’t that sound nice?”
Walking to the parking garage, hand in hand, Brian and I said nothing. We were suddenly the parents of a girl who might or might not see thirty, and that somehow seemed like a personal failing. We’d made someone with an expiration date.
My mom said good-bye to us in the lot; she was off to do errands, her eternal errands. When I hugged her good-bye, she whispered, “I don’t know what the doctor said to make you two so grim, but doctors don’t know everything. Look at her, she’s perfect.”
I looked at my daughter. She was chubby, currently pink, and humming a wordless, happy opera. She was a baby from central casting.
With a time bomb inside.
I thanked my mom, and we got into the car. I was driving. As I pulled out of the garage, the city spread below us, a rippled, silvery skirt, rising and falling with the hills, hemmed with the blue of the bay. It was an infuriatingly perfect day. Why would the weather never corroborate one’s mood? The bay sputtered with light, transmitting its secret code in a series of blinks and flashes—blue, blue, blue, silver, blue, silver.
Relax, the signals said, everything is OK. The baby might be sick, but she is going to get well. Someday she is going to get an apartment at the top of one of these hills; she’ll count herself among the supremely lucky who get to live in Northern California. She’ll hike the Marin Headlands, get coffee at Caffe Trieste in Sausalito, kayak. She’ll bike through the marina, fly kites at Fort Baker. She’ll do laundry and read trashy magazines and eat cold tofu chili out of the can. Fall in love. Maybe have a baby of her own. She’ll waste time, someday, in a beautiful place because her time on earth won’t be precious. It will be ordinary, disposable time. Just wait.
I was on Lombard Street, approaching the bridge, with both hands on the wheel, when a midnight-blue SUV swerved fully into our lane. The driver seemed to hold a beautifully naive belief that two objects can occupy the exact same time/space. I pulled hard to the right and our car jumped the curb. Thank God, the sidewalk was empty. The SUV driver drove merrily on.
At the next stoplight, she was chatting on the cell phone, head tossed back, laughing. If you are going to nearly kill us, I thought, at least have the courtesy to do it on purpose. I put the car in park, got out, and walked up to her window. She kept chatting. I knocked. Finally, she turned to look. I pointed behind her. “Do you see that car?” She nodded her head. “There is a baby in the back of that car who needs blood transfusions to stay alive. Can you see her?” The woman made the universal palms-down, calm-down gesture. “Do you see the baby or not?” She just stared at me; risk assessment. “That baby has enough trouble surviving without your fucking murderous phone calls.”
Brian got out of the car. “Heather,” he said, “you’ve made some fine points. Now it’s time to go.” I looked at the woman; she didn’t seem like she got my points at all. The moment the traffic light turned green, she was gone. I walked back to the car; Brian was behind the wheel.
“I’ll drive,” he said, sounding casual.
“I can drive,” I said. “I’m a great driver.”
“You are,” Brian said. “You are a legendary driver.”
But he didn’t get out. I walked around to the passenger’s seat.
“She tried to kill us with her Lexus,” I said.
He put one hand on my knee. “I’m always so impressed by the way you know the brands of cars.”
“But did you see that?”
“I did, I saw that,” he said. His that seemed to encompass my actions as much as the woman’s.
Thankfully, Gracie had slept peaceably as I’d wandered around in live traffic, cussing people out. As we crossed over the Golden Gate, I remembered some pop psychology book I’d once read that said anger, searching for an appropriate target where none exists, will aim at whatever is handy. Maybe the Lexus woman was handier than a blood disease. But I said nothing of the kind to Brian. Chances were, he’d be my next target, and I didn’t want to help him disarm me.
After dinner—something veggie for Brian, something meat-ish for me, and minuscule pieces of both for Gracie—we put her to bed with her favorite book, Goodnight Moon. “Goodnight kittens … Goodnight mouse … Goodnight stars. Goodnight air. Goodnight noises everywhere.”
This book, once beloved, now sounded sinister. Goodnight was uncomfortably close to good-bye.
After Gracie fell asleep, Brian and I sat on our narrow deck overlooking the stream and talked about everything Dr. Koerper had said. Each of us, in our own way, was trying to metabolize the shock of her statistic. If we did not give her a transplant, we had a 50 percent chance of knowing our daughter at age thirty. She had only a 50 percent chance of knowing herself for thirty years.
We calculated her odds of reaching various ages. Did she have a 100 percent chance of reaching the age of twelve, fourteen, eighteen? A 75 percent chance of reaching twenty-five?
“Fifty-fifty chance of reaching age thirty,” Brian said. “I didn
’t expect to hear that.”
“Bone marrow transplant,” I said. “I didn’t expect to hear that.”
“Me either.”
“But cure sounds good. I am crazy about cure.”
“Yeah, but to get to cure you have to take your kid through hell. And there is no guarantee she’ll walk out.”
“Also, what would we cure her with? We have no sibling!”
“And even if we wanted to give her a sibling, we can’t be sure that the new baby would be born healthy. Can you imagine having two sick kids at the same time?”
“No,” I said, even though I was picturing two wan, limp babies side by side in a double stroller that Brian and I, side by side, pushed uphill, never down, for all eternity.
“Besides,” Brian added, “we only have a one-in-four chance of having a kid who, if they were healthy, would match her well enough to use the cells for transplant. Twenty-five percent. Those odds stink.”
I looked at him, my glass-half-empty guy, who I suspected was secretly a glass-half-full guy. We were doomed. I did not want to be doomed, I rejected doom, but I couldn’t see a clear path through the numbers to daylight.
And there was this: was it ethical to have a second child to save the first child? Who wants to arrive on earth as a parachute, a backup plan?
“We can’t risk it,” Brian said.
“We can’t,” I said. “And we won’t.”
Brian put his hand out for mine and stood up. “I’m going to putter for a while. And then, do you want to watch 24?”
By putter Brian meant write. Despite his worst fears, he had been, miraculously, inventively, finding time to write inside family life. Sometimes he brought his computer to doctor appointments and wrote as we waited, which made me both thrilled and jealous. Now, from out on the deck, I could hear the beginning taps on his keyboard.
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