My 3-year old son Matthew has pushed aside the clutter of theology books in our living room and is carefully lining up his blocks in the neat rows of a cemetery. He has made grave markers for all his little friends, and one by one he reads off their names. I can see some of these friends happily racing around outside as he works. The only child in Matthew’s play-cemetery who really is dead is Matthew’s little sister, Margaret. Margaret Thea died when she was 4 days old. Theologians and mystics have seen in the life-giving, protective power of human mothers images of God as mother. But right now these images feel very distant from me. I see mothers everywhere, their children trailing around them like planets around the sun. But my stomach is strangely loose and soft, and no baby sleeps in my arms. The fertility and hope of my life-giving body seem not powerful but foolish; my tears are matched with milk from a body that doesn't yet understand that the baby is gone. Dozens of people notice I'm no longer pregnant and stop to smile and ask, “How is your baby?” And I give the crushing reply: “My baby died." No one predicts that answer. Many do not even want to imagine my world. “Oh, now you have an angel in heaven,” they say, or “Oh, now she’s with Jesus.” Despite the telltale Catholic and Protestant differences, their cheerful assurance is surprisingly the same. I know everyone means well. I understand that these responses are meant to give me a better story to tell. But I do not want to tell some other story. As Margaret’s mother, I want at least for my words to give her a life of her own.
I should know Margaret better than anyone, but until her last day I never understood she was dying. My husband, Bill Bolan, and I knew she was sick. The doctor had detected fluid in her lungs during an ultrasound at 20 weeks. He was concerned, but we remembered how ultrasounds had revealed anomalies before Matthew was born, and yet everything resolved. I was monitored, and for weeks nothing changed. But, at 30 weeks, fluid suddenly filled almost half her lung cavity, compressing her fragile lungs. Within days the fluid filled Margaret’s lungs and abdomen; it lay around her heart and under her scalp. We were sent to specialists. They decided she had to be delivered, saying her chance for survival was 10 percent. I was wheeled into surgery, terrified she might die while I was asleep. I woke up scared, pulling my eyes open to face the news.
But the doctors did stabilize her, racing to drain her lungs so a respirator could make her breathe. They told us they were “guardedly optimistic.” We held on to that phrase. Margaret’s lungs drained faster than hoped, she was staying pink, and they were able to decrease the pressure on the respirator. They told us she would need at least two months in the Newborn Intensive Care Unit. Too afraid to face the possibility that Margaret could still soon die, I tried to live out a different story—of her long struggle and eventual triumph—as if by living out my hope I could make it true.
I was discharged 48 hours after the C-section, and my husband got us a room at the nearby Ronald McDonald House. My mother, who had flown out to help us take care of Matthew, began making plans to go back home. Each day Bill and I took turns taking care of Matthew and sitting with Margaret, struggling to learn from the changing pattern of nurses how to be with a sick baby we were hardly allowed to touch.
The Ronald McDonald House does not allow any non-emergency calls after hours. When our phone rang at 5 a.m., with disbelief I knew the terrible story I had been refusing to live was now going to be mine. A police car with flashing lights raced us to her bedside. Margaret had deteriorated significantly overnight. Doctors spoke to us: “There is nothing more we can do.” Margaret was swollen as if someone had blown her up; her skin was strangely dark, and her eyes were squeezed shut. The respirator continued to push air into her lungs, but oxygen was no longer entering her system. She was dying, today, and they couldn't make it stop.
As graduate students—my husband and I were earning doctorates from Notre Dame—we had studied difficult end-of-life decisions, but the choice we were given was simple. We could leave her in the incubator, on all the monitors and machines, where she would die as her organs slowly failed, or we could take her out and hold her, where she would fail more quickly. The difference was only a matter of hours. No other options remained.
We wanted a full life for Margaret, but it seemed the only way we could give that to her was to understand that she was dying. We called the chaplain and had Margaret baptized. We brought Matthew in to see his sister again. For months he had planned all the things he would do for his little sister. He chose a toy for Margaret and gave it to her. We tucked it under her arm and told him how happy she was to have a brother like him. We wrapped her fingers around his and tried to explain to him why she looked so different and why we were going to have to say goodbye. He kissed her, we hugged him tightly, and he resolutely went out with his grandmother.
As we all gathered by her bedside, Margaret continued to decline. We told the doctors we wanted to hold our daughter. As if untangling her from a web, Margaret’s nurse slowly detached her from the monitors’ many wires. For the first time Margaret entered our arms. Then, wheeling the respirator alongside, my husband carried our daughter, as one would carry any newborn, away from the rows of tiny, sick infants and into the quiet, private room for the ones who are dying. For hours we held her there and talked to her—of our love for her and our dreams for her, of the life we had waiting for her, even though she surely couldn't understand our words and perhaps was too sick or numbed by the painkillers to even be conscious of our presence—until she grew cold in our arms. We cried and prayed and held her, doing everything we could to protect her from suffering, fear and loneliness, until she seemed so silent and far away that we told the respiratory therapist she could remove the last tube.
For months I had embodied two stories. One was of my own messy, joyful, difficult life. The other was of my daughter’s life, preparing to be slowly—day by day, year by year—lived out by Margaret as her own. For a few days I lived out a battle between two possible stories about Margaret, trying to live out the story of survival we all wanted to believe and then having to accept and live through the story of death we all had feared. There is still a story about me. But where is the story of my daughter now?
Four days of a sick child’s life produce little in the way of materials that tell the story of a lifetime. I have some pictures of a very sick little baby covered in wires in a strange hospital next to her frightened and exhausted parents. I have the only outfit she ever wore, one that I bought so she would not die naked. I have her hospital blanket, her gel pillow, the scissors that cut her from the constant monitoring of her life as it ebbed away. I have the memory of our one look into each other’s eyes, my infinitely too-brief time nestled close to her warm head, watching over her as she woke once before returning to her newborn’s world of sleep.
It was not just my body that made space for Margaret, growing bigger and bigger as she grew, nor does her story belong only within the tiny time and space in which her body lived. When I was pregnant, we all—and especially I—dreamed a life for her. I made up stories for Matthew about what he and his sister would do together. My husband and I pictured our children together, the energy and activity of a new family of four. We planned where we would set up Matthew’s old crib and how room could be found among Matthew’s things to make space for Margaret’s. We all carved out a place for her; we wove her into our future, our lives.
But Margaret never slept in the crib, never had anything to make room for. Margaret never came home. Instead, the same three people returned to the same small house that now felt terribly empty. Without some sense that the world we dreamt for Margaret was truly possible, the story of her four days is a story dominated by sickness and death that does not yield enough of the story of the daughter I longed for, and still do.
As I search for a way to tell Margaret’s story—the story that should have been hers to tell—my mind keeps returning to the language of “possible worlds.” The philosopher Gottfried Wilhelm Leibniz used this language to claim that this actual world is the “best of all possible worlds.” But what is most striking about Leibniz’s language of “possible worlds” is how impossible anything other than this world is. For Leibniz, once God has separated “the best of all possible worlds” from all the others, God leaves the rest scattered, dry and lifeless, in the dust of mere possibility. God chose the best—why look back?
“It’s all for the best,” people like Leibniz say, imagining that from God’s infinitely distant perspective everything that happens fits perfectly together like pieces of a puzzle. But as the mother of a dead baby, I want a person and a world of human beings—not a puzzle. And when I most feel I have experienced God in this world, it is not simply in a flat-line story of what actually happened.
Margaret’s life ended in a strange hospital far from home. I didn't want to hold her funeral in a place that felt unfamiliar, or in a place that felt as big, dark and empty as I now did. So my husband and I asked to hold the funeral at Notre Dame, in the small chapel in Malloy Hall by the theology department where we had studied for so long. Before she was born, Margaret, like Matthew, used to join me there, quietly fluttering and sleeping inside me as I moved through the ordinary work of my days.
I didn't know how to go to my child’s funeral but, when the morning came, we drove to campus as we did every day. We found Margaret waiting for us under the statue of Mary. Still, I was afraid. As the chapel filled, Margaret was moved next to the altar and next to me. I felt peaceful, almost happy, just to be near her again. Family, friends—nearly the whole theology department—came because the life of a little girl they’d never met was real to them. In her tiny story, barely begun, they knew how to hear the story of a person, made thick by past hopes, remembered futures and real possibility. After a baby is born, a mother can finally let others help her care for the new child. In that chapel filled with our community, I felt Margaret gently lifted into their care. For the first time I could rejoice in being near my daughter now that others, too, held open a world for her.
As we stepped out of the chapel into the bright sunlight, the dreams I had of Margaret when I was pregnant with her returned. I held my husband’s hand, and we walked together behind the funeral car to Cedar Grove Cemetery, at the edge of campus. As I watched the crisp spring wind rustling through the treetops, I could almost see my daughter just ahead, peacefully drowsing in and out of her world.
After the funeral I slowly brought myself back to my work. I returned to the library; I read some new books; I printed out my dissertation files; I hid from all the people who asked me cheerfully about my baby.
On one of these early days back, as I was surrounded by my theology books, my computer rang the familiar sound telling me I had new mail. I found a quick message from my husband, sent from his cell phone. “Ah,” I thought as my heart leapt, “he is writing to tell me ‘Margaret is alive!’”
This reaction, in reflection, astonished me. How could “Margaret is alive!” seem so likely that I did not even consider he could be writing to say “Matthew is napping” or “No big medical bills today” or “I love you”? Who receives text messages about dead babies suddenly living again? But nothing seemed more logical. I spent my pregnancy waiting for her to arrive. But she was born into a terrible, frightening story of death and died before I ever heard the joyous cry of her birth: “A baby is born!”
In a marriage ceremony some consider the words “I now pronounce you husband and wife” to be performative words. They make something true as they are said. Few words have such power. When I was told my daughter had survived the delivery, those words did little to enact her life against the looming threat of death. The text message, of course, did not say “Margaret is alive!” It said only some ordinary little thing. I would soon go home, and Margaret would still really be gone. But what hearing those words in my mind performed for me was the real possibility of Margaret’s life, the joy with which I longed for her and with which I had truly welcomed and expected her.
Matthew stands with his foot poised over his cemetery rows. His kick sends the blocks flying across the room, and he heads off to play something else. We have just returned from Matthew’s first visit to Margaret’s cemetery. Matthew surprised us by his relief to learn that our family is not alone in our story of death and new life. He ran off through the graves far ahead of us, delighted with the freedom to explore for himself. “Hey, Mommy!” he had called back, laughing, “What will we do with all these stones when God makes everybody alive again?”
We still struggle to express how much we miss a little girl who lived so little. One day Matthew built a bed of pillows for Margaret next to his own bed, joyfully acting out his old plans for her. I keep a glass case on my bureau that I was given to protect the beautiful molds of Margaret’s hands the hospital made for us. But the case stands empty. For me, it makes visible Margaret’s absence. Sometimes Matthew sneaks in and puts something special of his own there—an old pacifier or a favorite little ball—and the space seems more like living space than any unchanging representation of Margaret ever could.
For her headstone we chose Jesus’ words from the story of Jarius’ daughter in the Gospel of Mark 5:41: “_Talitha cum_,” “Little girl, arise.” We left the story, like the story of our daughter, begun and then interrupted, always remembered—unfinished.
_Janice Thompson and her husband, Bill Bolan, both received their doctorates in theology from Notre Dame in 2005. Janice teaches theology at King’s College in Wilkes-Barre, Pennsylvania, and Bill works in social services. Matthew is now 6 years old and the proud brother of Isaac, born in August 2005_.