But we were actually on the same side. We both wanted our girl to live, and to live a good life. I unlocked the door. Brian sat down beside me. He ran his thumb along my inner wrist. I felt my shoulders relax.
“What are we going to do?” I said.
I wanted him to say, We’ll follow your instincts. We’ll use Gabriel’s cord blood. We’ll do the transplant. We’ll hold on like hell and keep her with us. “I don’t know,” he said. “I really don’t know.”
We were confused. We were scared. This was a trial by fire, and we were in the middle part, where you burn.
24
Six months earlier, when we’d arrived in Brooklyn, I had seen a Craigslist ad that sounded too good to be true. “Charming 2-bdrm purple Victorian on Webster Pl., quaint block of Painted Ladies,” whatever those were. This rental was at the top of our range, over it. But our range had acquired a terrifying plasticity.
I’d read the ad aloud to my mom over the phone. “Too good to be true, right?”
“Just go check it out,” she’d said. “You have nothing to lose.”
When I think now at how close we came to missing out on Webster Place, I cringe. I shudder. We could have missed Kathy. We could have missed Eden, Chloe, Steve. We could have missed out on Marty Markowitz, borough president of Brooklyn, standing on our front porch to deliver a short speech to the crowd below.
Painted Ladies turned out to be brightly colored Victorian row houses with wide connected porches. Ours had two floors, huge in comparison to everything I’d seen before. Even before I looked upstairs, where two big bedrooms were divided by heavy wood pocket doors, I was leaping around with excitement saying yes. A backyard, a washer and dryer in a laundry room, “parlor floor” windows taller than Brian, double yes.
The owners had to leave town before we could meet to swap lease and keys, so they left the key with a neighbor. Brian arranged to meet her one day after work, but when he arrived at her house, she wasn’t home. She was eight months’ pregnant at the time, and in the fog of making a new human, simply forgot. He phoned her up, and all was arranged anew. That night I asked how our new neighbor seemed. He said, “She used the word mortified about forgetting to meet me. Can you believe someone would be so considerate in 2004 as to be mortified?” That was Kathy, day one.
The next morning, as I dragged the garbage out to the curb, an energetic blond woman walked by, pulled by her pug. Eight months’ pregnant. Had to be her. She glanced down at our pile of broken junk, including a decrepit hobbyhorse and broken toilet brush.
“The glamour of domestic life,” she said, “knows no bounds.”
Later I’d know her as a forgiving daughter to inventively demanding parents, a calm and antic mother to two daughters, a tireless and wide-ranging reader, a scattered and funny partner on urban adventures, a haphazard cook, a lover of a slightly messy house, a secret player of strip poker with her mate, a pretty woman unvain in the extreme, a profoundly unpretentious person who grew up in the thick of one pretentious milieu after another without losing sight of what mattered—kindness. I’d know her as the holder of an MFA in fiction, a prize-winning playwright, and someone madly in love with her pug, Monkey. But all that was icing. The cake I found out within the first three minutes: the sight of her bright silhouette walking down the street toward our house gave me a good feeling.
“You must be Kathy,” I said, and held out my hand. “I’m Heather, Gracie and Gabriel’s mom.”
“Kathy,” she held out hers, “mother of Eden and whoever is in here.”
We were a matched set: two mothers with a toddler and an infant (almost) apiece, aspirational creatives bogged down by small people. When we shook, it felt as if we’d brokered a deal: we’d help each other.
The next day Gracie met Eden, Kathy’s daughter, a serious strawberry blonde with a narrow chin and wide-set blue eyes. She wore glasses, which she pushed back into place frequently and with great care. She arrived via a plastic car with a bright orange roof, like an emergency vehicle. Behind the wheel she was calm and self-possessed. When Edith Wharton drove, I thought, this is how she looked. When Eden got close enough, Gracie rushed the car and tried to climb in. It wasn’t designed for two, but Eden scooted enough to make room. “Hi,” Gracie said, pointing to the nonexistent space between them. “This is Doo Doo.” Her imaginary friend.
“I know Doo Doo,” Eden said.
And with that, they, too, were friends.
Neither girl had ever made a friend before, and the idea that they lived only a few houses apart was intoxicating. Each would rush outside in the mornings, stand at her end of the block, and shout down to the other end, “Eeeeeeeeeden!” or “Graaaaaaaacie!” They’d run to the middle and throw their arms around each other, a pair of lovers reunited after a tragic separation.
A month or so after we arrived on Webster Place, Kathy delivered her baby, another redheaded girl, Chloe. After that, we began to walk, almost daily, in any kind of weather, because it was the only way we could restrain/entertain all four kids enough to talk.
We would push our merry (or not so merry) clan to Prospect Park, past brownstones, rows of mature trees, and the many, many moms in muted-color, million-dollar active wear. In contrast, we were slobs, who shlumped to the park in anything clean. But we had a good time.
I never mentioned Gracie’s illness. I didn’t tell Kathy that the toddler kicking her feet with faux hunger as we passed the ice cream truck had thus far visited UCSF Medical Center, Oakland Children’s, Stanford, NYU Medical Center, Weill Cornell Medical Center, Memorial Sloan Kettering, Columbia University Medical Center, Long Island Jewish Hospital, Hackensack Medical Center, and Boston Children’s. I didn’t tell her that we’d recently sent slides of Gracie’s blood to a specialist at the NIH and several doctors at the Mayo Clinic.
I didn’t share with her the oodles of conflicting advice we’d gotten.
How a famous transplant doctor who’d worked with over nine hundred patients in Italy emailed to say, “Transplant as soon as possible.” While the genius doc at Boston Children’s whom we waited months to see wrote to us after the appointment to caution that younger patients see “overall higher rates of peri-transplant morbidity and mortality.”
Peri-transplant morbidity and mortality. Really? You had my attention at hello.
With Kathy, our medical life was invisible, and I was just another Brooklyn mom. We talked about whatever: the pros and cons of FreshDirect; how not to strangle the brutish biters of the playground; our refusal to care about “the baby weight”; books we remembered from back when we read; our own writing, equally distant; our mates’ foibles and failings (infinite) compared with their charms (finite). Whatever did not include life-threatening illness.
I didn’t even tell her that Brian and I weren’t married because that part of our story invoked the whole: the unsettling fact that we looked like one thing but were another.
One drizzly morning Kathy called. “Do you wanna go to Coney Island?” Least likely plan for a bad-weather day. Perfect. We arrived somewhere that was, if not Coney Island, then close damn enough. Two parking places on one block, what were the chances? It was now pouring, sheets and sails of pelting rain. Another friend might have said, let’s turn back, or insinuated a bit of unspoken blame. We parked and ran toward a neon sign, “Nathan’s Famous Hot Dogs.”
Inside, I dried off Gabe with paper napkins. Kathy gently patted Chloe’s ears and nose. Gracie and Eden, infected with the giddy absurdity of running through rain, shrieked, “We’re wet,” flailing their limbs. “We are so wet!” As if wet were rich or beautiful; a small victory they’d achieved by collaborating.
Friendship, with its inexplicable alchemies, is hard to parse. Something had drawn Cassie and me to worship the same horse gods, as ten year olds. Had drawn Suzi and me to the same grungy couch at college parties. Something made Kathy and me click at first shake, and that same unknowable something looked to be alive between these two toddlers.
; They said it again, practically singing, “We are so wet!”
“This is great,” Kathy said, “in the worst possible way.” Her laughter transmitted goodwill, a sense of camaraderie in adversity, a little benediction on bad fortune. It was an antidote to Gracie’s illness, which Kathy could not see, but which was omnipresent.
I thought of the Auden quote, “Among those whom I like or admire, I can find no common denominator, but among those whom I love, I can; all of them make me laugh.”
We ate our soggy hot dogs, in our soggy clothes, then drove home. A nothing afternoon that meant everything.
If you are lucky, you meet four or five people in a lifetime who you’re totally comfortable with. Comfortable in a way that causes your best self to surge forward. With them, rowing through life’s quotidian mess is an adventure. I thought of my mom and me, twenty years earlier, cracking up as the Corolla filled with water.
That night after the kids were asleep Brian said, “You look like the California you.”
“I look different in California and New York?”
“In New York, you sometimes look like a person visiting from another planet and this planet’s gravity is too intense for you.”
“In New York, everything is heavier.”
“But tonight it’s lighter?”
“It was a good day. Kathy and I dragged the kids, through rain, to Coney Island, for stale hot dogs.”
“That is a good day. Did you talk to her about Gracie?”
“No. I keep thinking that maybe if Kathy and Eden see Gracie as well, then she will be well.”
“Sweetheart.” Brian put his hand on the small of my back and drew me in.
I put my hand on his cheek and left it there.
“Bedtime,” he said.
Bed, where the trick was to stay awake long enough to enjoy it.
25
Midwinter, Gracie began to sag, running a series of mysterious fevers, 104, 105, with no discernible cause.
I was already overtaxed by this crazy Brooklyn existence. East Coast winter, with young children, sucks. Leaving the house requires a complex layering of clothes onto baby and toddler that would try the patience of the sanest and most organized person (not me). Once I raised my voice at Gabe, not yet one year old, for squirming out of the snowsuit I’d levered him into. Gracie gave me a dark look and said, “He was just born, give him a little time.”
Around four or five each afternoon, I considered placing my head in the oven and turning on the gas. Just to make the place nice and toasty. And then, blissfully, Brian would return home. He’d put down his briefcase. He’d lift Gabriel out of my arms. He’d make Gracie laugh. We would kiss, a nothing kiss. An end-of-day, I’m-home-now kiss, a kiss to make the world go round. A kiss that contained and tried to refute the truth—that our girl was a listing boat in the waters of toddlerhood.
About her fevers, our new New York doctor was cavalier: “Kids do unexplainable things, especially kids with underlying illness, like yours.” Did she even know Gracie’s name? Also, I didn’t like the description, underlying, as though Gracie’s entire personhood was built on the sickness, rather than the sickness being a footnote to the way she touched her fingertips to my eyelids at night and said, “Can you see me when you sleep?” Or the way—when Brian set her shoes on his head and walked around the house saying, “Where are Gracie’s shoes? If only I could find Gracie’s shoes!”—she’d laugh until she doubled over, touching her forehead to the floor. A tiny, davening supplicant to her dad’s idea of funny.
It was also true that two or three times a day she would collapse with fatigue, a puppet whose strings had been cut.
At the park Gracie would quietly watch the other kids tumble through space, zigging, zagging, squealing through the play structures in wild, energized circles. She seemed to consider their play an enticing, alien task for which she was not fully equipped.
If she climbed to the top of a slide, it was with a devoted, intense focus. As the soul of caution, every step considered. Foot up. Stop. Breathe. Look around. Push up her sleeves. Wave to me. Wave to Kathy. Step. Stop. Breathe. Look around. In the time it took her to climb halfway up, an impatient mob would coagulate behind her, hoping to pass.
Eden would be up and down the slide five times before Gracie summited. Gracie was forever calling after her, “Eden. Wait. Wait, Eden. I am coming.”
Kathy never mentioned Gracie’s lethargy. If I did, she tried to be reassuring. “That might be her nature,” she’d say. “She’s a prudent kid. Like Brian!”
Gracie’s fevers, her general lack of zest, fueled my sense that we needed to act. One night as I took off Gracie’s shoes, I noticed they were tight.
“Oh no!” I cried out. Brian pounded up the stairs.
“What? What is it?”
“She’s outgrown this.” I held up the guilty red boot.
“And that’s bad because?”
“If she’s outgrowing her boots, she’s outgrowing her donation.”
“What donation?”
“Gabe’s donation! His cells. They said for transplant the more cells per kilo the better. And she’s gaining kilos. Look at these huge feet.”
“If we decide to transplant her, the cord blood we collected from Gabe is sufficient for many, many shoe sizes to come. You know that.”
Gracie, who had been ignoring this conversation in favor of looking through a picture book about baby ducks, turned her attention to her feet.
Brian looked at her. “You’re growing, sweetie.”
He looked at me. “That’s generally perceived to be a good thing.”
He picked up the red boot and placed it on his head, glanced anxiously around the room. “If I could only find Gracie’s missing shoe, I’d be a completely happy man.”
Gracie giggled and touched her forehead to the floor, then turned serious, helpful. “Daddy, look up.”
26
The new hematologist, who might or might not know Gracie’s name, was Dr. G. She had come highly recommended by virtually every doctor we’d encountered. In theory, she was amazing. In practice, meh.
On our first visit she’d kept us waiting for almost four hours. “If this is the first date,” Brian had said, “I shudder to think how she’ll treat us on the second.” But her hospital had the best facilities, the best blood. The washed and irradiated blood. We would wait.
On our second date, Dr. G told us that we needed to begin chelation. We’d known for a while about the need for chelating transfusion-dependent kids but had put off learning the details of the process in the hope Gracie would be cured before we had to deal with it. No such luck.
“Can you explain the process?” I asked.
Dr. G spoke to us while looking down at her pager. “Children who receive blood transfusions accumulate iron in their tissues. Red cells have an inner iron core. When the transfused cell disintegrates its iron is released into the bloodstream. Over time, this interferes with heart and liver function.”
“What will this require from Gracie?” Brian asked.
Dr. G looked at us briefly and then back at her pager. “The patient is hooked up to a pump which delivers a chelating medicine over a twelve-hour period each day.”
Until now, Dr. G had evidenced no sense of humor; the chance that this was a cruel joke seemed slim. Her foot bobbed, restless; she was ready to move on to the next room, next customer. Were those Jimmy Choos? A gauche display of conspicuous consumption made possible by the for-profit health-care system. Or maybe she came from money, and medicine was just a hobby. Maybe I would like to think about anything except what she had to say.
“Twelve hours?” Brian had said. “Isn’t that a long time to constrain a three-year-old?”
“Most parents do it at night.”
“How long will she need to do this?”
“For the rest of her life.”
Silence on our part.
“As long as she gets blood, you will need to pull the iron out. Otherwise, e
ventually, the lungs and heart degrade.”
My brain locked; I was post-verbal. The heart. The lungs. As though they were free agents, objects separate from the girl, with agendas, frailties, whims of their own. Parts that could rust, decay.
“When should we begin?” Brian asked.
“This week. I’ll write you a script for the chelating agent and the pump. A visiting nurse will come and help you learn how to operate it. You’ll see, it’ll soon be as routine as brushing your teeth.”
I wanted to scream, Do you spend twelve hours brushing your fucking teeth?! Killing the messenger was too good for Dr. G. I would torture her first, with the spikes on her Jimmy Choos.
From then on, every night, our primary mission was to successfully “hook her up” to the pump.
I was the designated mixer. The chelating medicine, Desferal, came in powder form, which had to be reconstituted into a fresh liquid solution with sterile water, dose by dose. The nurse who taught me the procedure emphasized the danger of overagitating the mixture and creating air bubbles, which could travel to the heart. I lived in fear of accidental effervescence.
The first night had been harrowing. Wait … swirl gently, swirl gently. I could hear the nurse’s voice. Wait … When it was fully dissolved, I drew the liquid into the syringe, locked the syringe into an evening clutch–sized pump, and primed the tubing until drips came out the end of the needle—careful not to leave any segments of air in the line. And then came the hard part. We had to get numbing cream on the girl, and the needle in the girl, without waking her. It was not a big needle, more of a thumbtack, but, like a thumbtack, it had to be pushed straight down. Pushing a thumbtack into your child is a counterintuitive act.
We put the cream on Gracie and waited for her to fall asleep.
When the needle pierced her skin, Gracie sat up precipitously and looked at us. “Be very careful,” she said, then toppled to the left, asleep again.
We crept out of the kids’ room and into ours.
I could hear Gabe’s quick whistling breaths in the next room against Gracie’s slower deep breaths. Hopefully, the pump’s medication was pulling iron out of her heart and lungs. Hopefully, they were not “degrading” right this second. It was hard to believe that chelating was a job for us, laypeople.
Happiness--A Memoir Page 14