“Good luck,” he said, lowering his head to avoid our eyes.
“Doctor,” I said, “do you think she’ll ever be able to walk?”
“We just don’t know. That’s all I can say,” he said, shaking his head as he walked out of the elevator.
“Why did you ask him that?” Michael asked, angrily.
“Because I have to know.”
“You don’t know any more than you did before you asked him, do you? And now you’ll just be more worried. What did you hear him say?”
I shrugged my shoulders. “He said, ‘We don’t know.’ ”
“That’s right. And that’s all he said,” said Michael, picking up the car seat with Eliana in it.
I nodded. That’s all he said, but what I heard was, “Your daughter may never walk,” which I translated into, “Your daughter will probably never walk,” which I translated into, “Your daughter might be disabled,” which I translated into, “We agreed that if our baby is disabled we will give her up for adoption,” which translated into, “I don’t know if our baby is disabled, so I don’t know if we’re going to keep her,” which translated into, “Michael will want to keep her, and I will want to give her up for adoption,” which translated into, “What is wrong with me? Why can’t I love my new baby? I’m despicable.” Which translated into a horrifying vision of throwing myself in front of a moving truck.
We waited for a taxi in the chilly afternoon under a thick, white sky. Ahead of us in line were an old man in a wheel chair, a teenage boy on crutches, a young man and woman cuddling their new twins, a middle-aged woman propping up a teetering, ancient man, and a mother holding hands with her bald little girl.
I thought about the day Brad and I brought Julia home from Beth Israel Hospital, in the East Village, nine years earlier. We were planning to say a quick good-bye to Julia’s birth mother and pick up four-day-old Julia. Just before we left our apartment, the attending doctor phoned and told us to meet him in his office with our Spence-Chapin social worker.
“I have reason to believe that this baby has Down syndrome,” he said when we arrived. “She has slanted eyes and broad cheeks, a simian crease in her palm, and trouble sucking, all indicators of Down syndrome. I know you are the potential adoptive parents, but I cannot let you take this baby home until we have completed genetic testing and you have been counseled on the ramifications of raising a child with Down syndrome.”
We signed papers as Julia’s foster parents, brought her home that day, waiting for the results of her genetic testing. Brad and I spent three days flip-flopping between wanting to keep her no matter what, and wanting to give her up for adoption if she had Down syndrome. Each morning he and I arrived at opposite conclusions, never in sync with each other. The not-knowing whether we were her parents created a chilling distance between us.
Three days later, the hospital’s chief geneticist told us, “I don’t know whether this baby will be smart or stupid, but I can tell you conclusively that she does not have Down syndrome.”
“But what about the simian crease?” Brad asked.
“She does have a simian crease,” he said thoughtfully, tracing the straight line across Julia’s palm with his finger. “I have a friend with a simian crease. He teaches at MIT.”
“How can we go back to that ecstatic feeling of unconditional love, before it was marred by uncertainty?” I asked Patricia, our adoption social worker.
“You can’t. Parenting is not about going back,” she said. “Parenting is all about moving forward, and constant, unpredictable change.”
Michael, Eliana, and I finally got a taxi, which aggressively thrust its way through the crowded Upper East Side streets, narrowly avoiding wide-load pedestrians padded with shopping bags. The winter city, gaudily dressed for the holidays, winked and twinkled her colorful lights, sang songs and jangled her bells, undulating to the rhythm of her crowded sidewalks. She seduced shoppers into stores with dancing windows, reminding me that Hanukkah and Christmas were next week and that I had to buy presents for Julia. Then the taxi withdrew from the holiday maelstrom and entered Central Park and the gray quiet of its leafless trees.
What I Know
1. My baby is tiny.
2. One leg is shorter than the other.
3. She’s quiet.
4. She is having trouble nursing.
5. Nobody knows what’s wrong with her.
6. Her name is Eliana.
7. Julia is in love with her.
8. Michael adores her.
9. I would give my life for her.
10. I’m afraid of breaking her.
11. I don’t know if she will ever walk.
12. She might be disabled. Therefore:
13. We might be giving her up for adoption. Michael doesn’t know I’m thinking this.
14. My body hurts terribly.
Scene 2
Home
In the hospital, my obsessive worries were mitigated by the knowledge that a team of specialists was working around the clock to diagnose and cure my baby’s problems.
Out of the hospital, there was nobody to help us. There was no diagnosis. There was no cure. There was just our baby. And us.
At night she woke every two hours. She nursed a little bit. Michael gave her a bottle.
We bought her some clothes at Baby Gap. Preemie clothes were too large. We got the extra small preemie size.
The adoption counselor from Spence-Chapin called. “How are you, Alice? How is the baby?”
“She’s . . . she has some problems. Idiopathic. She’s very small, and one side is shorter than the other.”
“Do you want to consider adoption?”
“I don’t know. I don’t know, I don’t know, I don’t know.”
“How does Michael feel about it?”
“I don’t know. I can’t talk to him about it yet.”
“If you want, we can place Eliana with a foster family while you make up your mind.”
“No, no I can’t do that. I have to nurse her. I have to nurse her so that I can give her something, so that I can boost her immune system, no matter what happens. If I’m going to love this baby, I have to start now.”
“You said she’s not getting much breast milk.”
“She’s getting a little.”
“Okay, Alice, I’ll call you again soon to see how you’re doing. Feel free to call anytime if there’s anything we can do.”
In the morning we went to Dr. Creighton, the pediatrician New York Hospital arranged for us.
“We don’t take this insurance,” said the receptionist, holding my offending insurance card at a distance, as if it were a stinking turd.
“I thought you took Oxford.”
“Not this Oxford. We take Oxford Freedom, but you’re on Oxford Liberty. We do not take Liberty!”
“The hospital made this appointment for us. Our newborn has health problems.”
“I’ll see what Dr. Creighton has to say.”
Dr. Creighton agreed to see Eliana just that one time at no cost. “She’s not effectively nursing, and her blood sugar is low. Here’s the phone number of a certified lactation consultant. Call her right away. And of course you’ll have to find another doctor. Eliana’s going to need a lot of medical attention, and you’ll need a better insurance plan.”
“We accept all Oxford plans for current patients, but we are not accepting any new Oxford patients.”
“Do you ever make exceptions? I live a block away from your office, my newborn has serious health problems, and we can’t find a doctor who will see her.”
“Oh, my goodness. Let me check with Dr. Levin. He loves babies. . . . I’m going to put you on hold for a moment. . . . Yes, Dr. Levin would be happy to see your baby. Don’t worry about the insurance. I’ll call Oxford right now to tell them we’re opening the panel for you.”
I was good at this job of slashing through red tape for Eliana. Just like I was good at obediently lying on my left side and drinking Gatorade for
three months to protect her from premature birth. Maybe my administrative perseverance and my protective instincts could serve as a placeholder while I learned to love her.
Dan Levin was gentle with Eliana, talking to her about everything he was doing. He talked to me and Michael like friends.
“The hospital record says that Eliana’s asymmetry is a result of Alice’s bicornuate uterus. Does that strike anyone else in the room as, well, absurd? Let’s try to get a reasonable diagnosis. And, Alice, if you don’t feel better in a week, please call me. Postpartum depression shouldn’t go untreated.”
We saw Dr. Levin every three days. Each time, the diagnosis he noted on the insurance form was “failure to thrive.” Failure to thrive, failure to thrive, failure to thrive.
In Levin’s waiting room twice a week, I watched toddlers perfecting their new walking skills in the play area, and I marveled at their good fortune to have legs the same length. While observing these symmetrical children, I found myself unconsciously straightening and pulling on Eliana’s shorter leg, as if I could lengthen it if only I applied myself to stretching. Symmetry, which I’d previously taken for granted, now seemed miraculous. It was difficult to imagine how Eliana would ever walk, run, play in a playground, ride a bike, without toppling over, without persistent pain. I pondered bicycle mechanics, engineering in my imagination a bike customized for Eliana’s different-length legs. I kept gently tugging Eliana’s tiny right foot, wishing her leg longer.
Lena, the lactation specialist, came to our apartment for an evaluation session, eighty-five dollars a pop, not covered by bad Oxford. She looked like a hippy—long blond hair and an ankle-length peasant skirt over big sheepskin boots—but her rap was pure Nipple Nazi. “No bottle feeding. Six months of exclusive breastfeeding!”
While Eliana napped, Lena assured me that she would fix my nursing problems in no time. Then Eliana woke up, and she observed our comical lactating attempts. Eliana licked my flat nipple until she got tired of the unrewarded effort. Lena then hooked me up to an electric breast pump, at which I was an utter udder failure, producing less than an ounce of milk. Uncompromising Lena compromised.
On her second visit, Lactation Lena brought props. She set me up on the sofa and arranged my breasts on a lactation pillow, which circled my waist like an inner tube, pastel-colored illustrations of dishes running away with spoons on the cotton cover. She hung a plastic tube around my neck, to which she attached a syringe full of infant formula. The formula flowed through two thin tubes, which she taped, with paper surgical tape, to the top of each nipple.
I looked and felt ridiculous. Lena lay Eliana down on the flat pillow, facing my right nipple and the milk tube. Eliana contentedly sucked formula through the plastic tube. My hands were free. I could read a newspaper, apply makeup, practice clarinet, tear my hair out. Every now and then, perhaps to make me feel better, Eliana found my nipple and took a polite little swig.
“I thought you said no baby formula for six months.”
“In extreme circumstances there’s a need for supplementation.”
“Are we trying to trick Eliana? She’s a very smart baby. She knows these taped-on tubes aren’t my nipples, and this isn’t my breast milk.”
“When there’s a basic incompatibility, we have to implement a compromise solution.”
“What do you mean by basic incompatibility?”
“I thought it was obvious. By incompatibility, I mean your boobs are huge, your nipples are flat, and Eliana’s mouth is tiny. You’re anatomically and functionally incompatible with each other, so there’s no possible way she’s going to get enough nutrition by nursing.”
“Then what’s the point of this charade? Why don’t I just bottle-feed her?”
“Because she’s getting some breast milk this way, and the lifelong benefits to her immune system are incalculable.”
“Okay, if you say so.” I bent over to look at Eliana drinking from the tubes. As I leaned forward, the formula from the tube around my neck spilled on Eliana’s head. Eliana didn’t seem bothered by the white puddle on her head, but I didn’t think we both had to look ridiculous.
“I believe I can speak for Eliana when I say this is very embarrassing for both of us. Are you absolutely sure it’s important for me to continue to breastfeed her?”
“Absolutely sure,” Lena answered.
Sending out a birth announcement briefly crossed my mind.
Eliana (legal name Miranda),
Born (quite by surprise) December 13, 1999
(after 47 hours of hell,
3 months of bed rest,
and 6 months of medical misjudgment and self-delusion)
4lbs, 15 ounces (after several days of failure to thrive)
19 inches (on the left side)
18 inches (on the right side)
to Michael and Alice
(who by the way are planning to get married on June 11,
but have no time to send out invitations.
If you’re getting this birth announcement,
you’re probably invited to our wedding,
so please hold the date.)
Julia loved Eliana totally and unconditionally. At nine, she was past the age of sibling rivalry. She raced home from school to play with Eliana, dressing her like a doll (she especially liked putting her in the purple velvet cape and matching slippers I’d received at the baby shower), putting Eliana in her big bed, and surrounding her with stuffed animals. She wanted to give her bottles, change her diaper, burp her, bathe her, read to her. She couldn’t wait till we moved the bassinet out of our bedroom so she could share a room with her baby sister. At Saturday morning basketball practice, Julia showed Eliana off to her basketball team, and allowed each girl to take a turn holding her.
Michael loved Eliana totally and unconditionally, though he was terrified of breaking her, dropping her from the changing table, rolling on top of her in his sleep after a nighttime feeding. Michael, who had always been a world-class sleeper, able to sleep through the loudest turbulence, now woke up the instant he heard Eliana cry.
Eliana loved all three of us, totally and unconditionally. Even me, though I didn’t deserve it. My feelings for her were dominated by my fear of breaking her, my shame that I’d already broken her in ways I didn’t yet know.
I studied Eliana—her rosebud mouth and blue green eyes, her peaceful demeanor and remarkable patience, her soft, cooing voice like the most sublime music. I kissed her broad forehead and her tiny nose. Her beauty and fragility—which I studied as if from a distance, although she was in my arms—reminded me of my insufficiency.
Eliana and I spent New Year’s Eve home alone. Julia was in LA with Brad. Michael was performing at a First Night celebration in New Jersey, filling in for a family show I’d originally been scheduled to perform. The producer was happy to substitute Michael’s solo show Lagushka: The Russian Frog Princess for my solo show The Balinese Frog Prince.
I nursed Eliana, with our hybrid tube-tape-nipple arrangement, while watching New Year’s Eve coverage, the frenzied TV celebration intensified this year by Y2K fears and dreams. Shortly before midnight, Eliana fell asleep. I was too lonely to ring in the New Millennium alone, so I watched the ball fall at Times Square with sleeping Eliana on my chest. “Happy New Year,” I whispered to her.
Scene 3
January
Solo Theater
My dormant work life awakened in January. Editing, teaching, performing. I was grateful that I didn’t have to lie on my left side to edit the new issue of Play by Play, and we needed the money, but it was too much, too soon.
My spring semester solo theater class started. Last semester my Monday night class was the highlight of my week—the time when I felt myself to be professionally most alive, creative, engaged. Now, having to trudge downtown in the slush on a frigid Monday night was a pain in the neck. I printed a copy of last semester’s curriculum and parroted the lecture and workshop I gave at the first class in September. “My goal is
to have each of you find the story you want to tell, and the way you want to . . . blah, blah, blah, blah, blah.”
My spring semester students were duds. Maybe they were great and I was the dud. My students were twenty-something and all ego, except for Esther Levine, who was eighty-four years old and all ego. The twenty-somethings wanted to create solo works about their sexual coming-of-age. They annoyed and amused me. Half of them were gay guys, and they wrote plays about coming out to their parents, about their first Gay Pride Day. They imitated one another, resulting in a bland sameness to their lewd stories of homoerotic self-discovery. Eighty-four-year-old Esther Levine imitated the young gay guys and produced her own lewd story of erotic self-discovery, circa 1940. None of my students were particularly talented, but they brought a lot of enthusiasm about their sexuality into the classroom, which was convenient, since I couldn’t muster enthusiasm about anything.
The second Sunday in January, I was scheduled to perform my solo family show The Balinese Frog Prince at the Bank Street College auditorium. Barbara, my ob-gyn, warned me that my body would need more time to recover. But I so desperately wanted to get back to the work that might make me feel like myself again. All fall, I’d looked forward to this January performance. But as the date approached, I found any excuse to avoid rehearsing, and ultimately persuaded myself that I knew the show so well I didn’t need to rehearse.
When the performance date arrived I felt only dread. Instead of the intense and somewhat loopy actor and playwright persona I was accustomed to summoning to my children’s shows, I was mired in exhaustion and pessimism. In the dressing room, I discovered that my costume was too tight. I hoped that nobody would show up so the show would be canceled. But there was a full house, children and their parents expecting a poignant and funny performance. The producer had paid me in advance.
What I Thought I Knew: A Memoir Page 10