What I Thought I Knew: A Memoir (13 page)

“I love you, little baby, little sister, I love you so much!” She kissed Baby’s forehead. “Mom, she’s so beautiful and she’s so little and cute. You’re so cute and little.”

 

 

Julia was oblivious to her sister’s deformity, and oblivious to my despair, which was a huge relief to me. Her happiness filled the room. Her euphoria was infectious.

“You’re the cutest little baby in the whole wide world.”

She plunked down on the vinyl-cushioned window seat, held Baby in her lap, and had a heart-to-heart. “I’m your big sister, Julia, and I’m nine and I’m in fourth grade. Did Mommy tell you that I was so surprised when I found out she was going to have a baby? This is what I was like. I was like, ‘Excuse me while I drop dead for a minute.’ Like this. Bleh!”

Julia flopped over with Baby. I gasped, while Michael jumped up to catch Baby, just in case Julia dropped her, which she didn’t.

“I’m going to have so much fun with you, cutie-head. I’ll teach you how to read and how to play soccer. What’s her name? Did you guys decide without me?”

We unanimously agreed that this baby was definitely not a Miranda.

“I think her name is Eliana,” I said.

“You don’t think it’s a little bit flowery, a little too pretty?” Michael asked.

“I think it works for her,” I said.

Julia said, “Eliana is a good name for her, cause she’s the prettiest baby and Eliana is the prettiest name. And we could call her Ellie, which is a really cute nickname for such a little cutie.”

“Whatever you want,” said Michael.

I thought, but didn’t say, that a name meaning “My God Has Answered Me” might serve as a talisman, a magical good luck charm, a perpetual prayer, an expression of gratitude, a way of keeping a higher power close to her. My tiny baby with idiopathic deformities could use a higher power close by. I could use one too, even though I was a committed agnostic. We were a family of agnostics. Even Julia, who was immersed in her Hebrew school studies and Bat Mitzvah preparation, and Michael, the only one in our family who believed that examining one’s relationship with God was a priority in life. I was far from certain that there was a higher power, but in that moment I was absolutely certain that my baby and I needed one.

Michael shrugged his shoulders. The name Eliana seemed a bit ornate to him, but this was his new role, adjusting his life and his wishes to please the women in his family.

The hospital changed Miranda to Eliana on all their records, but the birth certificate form had already been mailed to the Department of Records. Her legal name was Miranda. We would have to apply for a legal name change.

“The Birth Certificate Lady said that we could fill in a temporary name and change it later.”

“We’re so sorry that you were misinformed.”

I stayed in the hospital for three nights while they tested Eliana, and while I was monitored—for pain, for vital signs, for depression.

When it was time to leave, Michael dressed Eliana in the zero-to three-month Baby Gap outfit we got at the baby shower. It was pathetically large on her, or she was pathetically small in it. Her arms and legs, lost somewhere in the torso section, didn’t begin to reach the sleeves. We bundled her the best we could for the chilly December day, strapped her into the car seat, and checked out of the maternity ward. As the elevator doors opened, we saw the dour neurologist.

“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.

Scene 2

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.”