There is no snow this Saturday morning in April, unlike last Saturday’s sudden crystal blanket which wrapped us, as if preserving us, keeping us tucked in bed forgetting what might lay ahead, what trouble I might find in her eyes. Spring is like that: full of waiting, for the last snow to dry to salt in our eyes, of a watery sun, of beauty and rage in those bursting buds, those tight tiny-star handed packets of tiny green digits unfurling on the oak to bring us paradise.
I pull open the glass doors to enter the first floor of the radiology private practice on Lakeville Road. It appears shiny, clean, empty of people, germs, tears. It is all glass door and polished chrome — trim, handles, all that silver reflecting a talc-free mix of early spring sun and electric light. I wonder if someone is here as I enter, my daughter next to me, in the vast unpopulated waiting room when a woman dressed in rose scrubs rises from behind the computer.
My daughter, with boundless buckwheat curls captured in a hygienic ponytail, approaches the receptionist. She whispers why she is here out of respect for the silence, out of respect for the question we are asking ourselves: why is she here?
J is given a clipboard with papers to be filled out then comes to sit next to me. She manages a few forms, then we hear her name.
I am left with the cable news, weather reports every ten minutes and medical magazines to read as I sit on benign beige seats set on benign beige carpet tiles. I wait.
I wait. J is in a back room without me. When she was younger, I could observe, monitor, advocate. Argue. Demand. Appear impatient. In waiting, I sit through a fear storm. In my waiting, I listen for a sign. I pray. Say if this never happened. Say that she was born as healthy as her sister. Say that I never broke, that I never nursed my own dying baby. Say that we never met Dr. Altman. Save her; savior. I would be a mother but not the same mother. I asked him to teach me and he said, “Get a notebook, there is a lot to learn.” I would become intensely fearless and intensely fearful. I would become lucky and unlucky. I experienced the emptiness of not having her when I had her, my daughter, J, right there in front of me.
In 1994, we met Dr. Altman when it was almost too late. J. was 8 weeks old; the outer time limit of success of the operation he would perform is 9 weeks. But I didn’t know that. She burned with jaundice, her eyes large and yellow; she did not gain weight; she sank into her older sister’s snowsuit, tucked in a car seat. At the sight of me, she strained to smile. When we met, Dr. Altman’s clear eyes observed us: me, dressed in a deflated maternity shirt, my disoriented, disheveled husband. His hand movements crisp, efficient, a hallmark of those with “physical genius.” I unzipped the baby’s snowsuit and opened her diaper which was soiled with brownish urine. With the touch of a finger Dr. Altman obtained a stool sample: it was pasty, nearly white. He looked up at me, inside me, assessed what I was made of. What did I have inside me? Was it enough?
He turned and made a phone call to ultrasound.
“Come,” he said, and we raced after him down the old hallways of Columbia Babies Hospital until we reached a cold and darkened room with machines.
He took the baby and laid her down.
With one hand on the baby’s abdomen and looking up at a screen, Dr. Altman said to the nurse: “hard.”
Then to me: perhaps there’s enough inside her. A liver can regenerate. It’s up to her.
When J. was three months old, she went on the transplant list, a list that isn’t chronological, that doesn’t stack like bricks or numbered items down a sheet of lined paper. It’s not a list of chores one makes to hide behind the feeling of business. It is an ever-changing list, water rising to the lip of the glass and falling and rising again when a different fluid is introduced. I waited through February, through March, April, and the baby’s milestones are not holding, a head doesn’t stay up, there’s no crawling; small amounts of milk don’t stay down because her liver, aware of its failure, grows in size to compensate leaving no room for food. Her abdomen filled with fluid. I took inspiration from the way Penelope waited for Odysseus’s return, who told her suiters she would marry after she completed a woven shroud, each day she would weave and each night undo it. I knitted a white blanket while we waited for The Call. I took her to be photographed and on the envelop the photographer wrote “yellow baby.” I took her to the playground and wrapped her in fleece. I carried her. I carried all of her and she cried when I put her down. I carried her close, her skin fused to my skin, her heart beat against mine, she drew her breath from my airways. I leaned into her transfuse energy. I leaned my cheek to hers to infuse my heavy love.
This morning, in the waiting room, daylight parts the beige vertical blinds. This is my PTSD moment. Waiting, I relive the story of her transplant which occurred more than 20 years ago. I relive receiving The Call. I relive seated in the back seat with her in her seat. I relive the dark. The rain. I relive arriving at open door of the transplant center, the nurses waiting for us, the fluorescent glow around them, as we, as if homeless, step in looking for redemption, a hot meal, and are relieved by compassion. I relive the updates as I lay in the crib with J: the helicopter arrives for the donor baby’s heart; the donor baby’s liver is bruised from a punch but it will heal inside J; the wheeling her in the stroller until the transplant nurse takes the handles from me; until she returns with the empty stroller; I relive the surgeons wheeling a pink baby on a stretcher fast asleep. “Touch her; smell her,” the doctor said. I relive learning the intensive care nurse held the donor baby, cradled the him, until he was taken from his room, to the operating table, that same room where J will recover. I relive the story. I know the ending. It is comforting. But she is in the back room now with intravenous dye coursing through her veins. I relive the comfort of Dr. Altman’s presence. I tell him I don’t want to live without her. He knows. He is here with me, even now, even these 20 years since he operated, since we met. He has chosen Dr. S. for her. He put Dr. S. on a path where she and J. would have to meet. The waiting room is freezing.
The transplant team measures time by counting “how many years out” how many years since transplant. We all celebrate J’s rebirthday. When she reaches 13 years out, the entire team surprises her for the annual visit. They have a few questions for J.
How do you know you are sick?
What do you do when you are sick?
What operations did you have?
Do you know why you had your operation? What did you have?
How do you get your medicine?
She gets a hundred on the test. And she wishes she hadn’t.
Because soon you are going to have to leave us, they tell her, those she loves and who love her and you are going to have to follow up for yourself they say. Adult doctors aren’t going to call you if you miss a three-month blood test.
I am never leaving my doctors, she said to me.
She said, they didn’t ask me how a vacutainer works.
They thought about her growing up before I did. Of growing up and separating. I haven’t thought about it at all. About her growing up, about her going to live her own grown up life out there in the real world where she looks like any healthy child born to learn to drive a car, to go to Prom, and head to college.
But in this alternate universe of the hospital, of this transplant center, she is not ready to separate from them.
I am not ready to leave them either.
They have become my shadow family. Aunts, uncles, people who I ask the most personal advice about her health. People who I call when she gets a hundred.
Rabbi Wasserman’s booklined office is located on the lower level of the synagogue. J and I wait for him on a two-seat upholstered in the rotunda-like area of bronze trim and brown granite, last winter’s chill humming on its shiny surface. The door opens, and J is called. She leaves me on the bench, one side of me suddenly exposed. She is getting ready to leave me, I think. She is going to be a teenager and I am dizzy with emotions of what might have been, if I did not have her, if she did not live. I keep my head down and my ear to the conversation between the Rabbi and J, the Rabbi who has shared with me that he is a rationalist who has studied the mystics. I am studying the mystics. I believe the spirits cross over. That some are with us. Watching. The Rabbi said to J who is mispronouncing a word in Hebrew. He says, “I don’t know why I am explaining this, but why two silent letters together? A good question: aleph and ayen.” I listen. This seems mystical. I know why he feels the need to explain, why the urgency is so palpable, in his gut, the insistence to vocalize the presence of each letter. The donor baby is here. I believe he protects her. Two silent letters together. The Rabbi says to J, “once they had a slight guttural sound.” And the Rabbi labors a sound from the seat of his being. Outside, from where I sit, I hear him say “silenced now in the word” but I think he is saying “silenced now in the world.” I think about the terror that quiet could have been if I could not hear her voice. I think that today two spirits wrestle serif to serif, aleph to ayen, something and nothing. I hear J chant the word and singing with her is the baby who lives in her, the part inside of her that was another’s, that this baby, too, is with us, her guardian angel, the previously silent voices together, singing, now, for all of us, who prayed for this day.
J asks me to come along with her to the first appointment with Dr. S. J. sits on the edge of the examining table facing Dr. S. I take a chair behind the examining table, in the rear corner of the tiny room. Dr. S. can see J’s face then look over her to see mine.
I observe as she questions J.
Why did you have this operation?
When did you have it?
Were you hospitalized?
What medicine do you take?
When was your last blood test?
It was hard for me not to respond. For years I spoke for J., when she had no words, when she refused to speak, when a situation demanded an answer. No, now, J. had to supply the answers and I had to hold my tongue and choke back broken words fighting free from a parent who almost lost her child.
Dr. S. immediately prescribes a list of tests to get to know her new patient, what her insides look like, what her blood reveal.
As we leave the office and head to the car, J. turns to me and says, “she’s the one.”
Five years after Dr. Altman operated on J, he wrote a letter to me. I thought you would be interested in seeing this letter from Mrs. A. Her son was the thirteenth patient that I operated upon. There were no transplant options in the 1970s. It was interesting for me to read the chart and particularly the post-operative note to see how far we have come since those early days. Mrs. A. recognized something about the baby in the photograph in an article she read in Family Circle that I wrote. As she read further, she saw that Dr. Altman was the surgeon. She was inspired to write to him, to contact him, to update him of the story of her life. Of her baby, she wrote: “He lived for 20 months and 3 days and was one of the greatest joys of my life. I know in my heart. God and you gave him extra time for me.”
I heard my voice inside hers: one prayer. Dr. Altman our intermediary with the Almighty. If we did not have the option for transplant, her story would be my story. My daughter had another option that her child didn’t. I grieved for her; I grieved for the self that might have been me.
I have been trying to make meaning out of the message in what Dr. Altman tried to share in this letter to me and Mrs. A.’s letter inside his. On the face of it, he was celebrating all that was learned in medicine from the time he first operated on Mrs. A’s baby and then on J. And in that regard, here was a gesture to praise the human spirit, of the power of inquiry and of bravery of all mothers who give permission to the surgeons to experiment, practice, attempt new procedures because there is always hope. Yet, it was as if he was reminding me, of our humanity and the rare glimpse of it that we three share. He was reminding me to be grateful, to know anything can go any way at any time. That there was, perhaps something else, that guided us, that decided our path for no knowable reason.
Dr. Altman was close to us. He had put his hands inside our babies, rearranged their intestines, built new connections so that the gold liquid bile could tremble down into the intestine so that our babies would be able to gain nourishment. And in so doing, created a new family. That each one of us belong to him and he belonged to us. After he died, I read an interview in which he stated his greatest moments in his life happened when grown patients looked him up, showed up, to face him, and shake his hand and say, “my mother told me you saved my life.” He saved ours, the mothers’ lives too. In death, he remains with me.
By ten o’clock, the mid-morning sun overtakes the waiting room and hides where it wants and reveals itself when it wants. J. makes her way to the waiting room. She emerges looking tired but relieved.
“I like this technician,” she says. “He asked me if I was cold and offered me a blanket. So, I thought, ok I’m going to give this guy some hints about what he’s going to see in there.”
I will never let her go, but I have to trust her. It’s up to her.
We put our jackets on and head for breakfast.
