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The Legacy of Loss: A Journey Through Grief and Healing

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Chapter 1: The Heart's Burden

The departed reside within us, both in spirit and in flesh.

Artistic depiction of loss and remembrance

Illustration by Carmen Johns

When we discovered that our first child was unable to survive the journey of gestation and birth, the decision to terminate the pregnancy was clear. It was a heart-wrenching choice, filled with sorrow, yet straightforward. The baby’s brain was not developing correctly, her intestines were positioned outside her abdomen, and her heart was malformed with only three chambers. There was no hope for recovery from such severe developmental issues, but we sought to ensure she would not endure unnecessary suffering. We felt the weight of our grief, yet we knew we had made the right choice. Three months later, I found myself expecting her brother.

In The Year of Magical Thinking, Joan Didion advises us to turn to literature in times of grief. Following her guidance, I immersed myself in reading about Trisomy 13, genetics, and fetal developmental disruptions. I learned that while T13 cases are documented as exceedingly rare, the reality may differ, as many are lost early in pregnancy. Our genetic counselor reassured us that our actions had no bearing on our daughter’s tragic anomalies; it was merely a chance occurrence in cell division.

Symbolic representation of genetic understanding

As I navigated my second pregnancy, I continued to read. This new baby was developing in the expected, healthy manner, which brought both comfort and fear. While the term “accident of cell division” had eased our guilt, it also left us feeling vulnerable. An accident, by nature, cannot be entirely foreseen or prevented. This concept parallels our human experiences and ailments, viewed through an evolutionary lens. I read with trepidation, appearing composed on the outside, but inside, I was grappling with the aftermath of loss.

At ten weeks, I presented myself for a blood draw to undergo the same genetic test that had delivered our heartbreaking news previously. The samples were sent to a lab in San Diego, analyzed by complex machines that mapped my DNA alongside the baby’s. For two weeks, we awaited the results with bated breath. I envisioned the diagnostic ultrasound from my first pregnancy: the outlines of a skull, spine, hands, and feet, followed by the devastating revelations of anomalies. It couldn’t happen to us again; it couldn’t be avoided. On days twelve and thirteen, anxiety consumed me, robbing me of appetite and sleep. On day fourteen, the call came: this baby was healthy. A robust, chromosomally normal boy. I cried for hours, overwhelmed with emotion, and eventually found rest.

I continued my reading, delving into the intriguing concept of microchimerism—how fetal cells can linger within the mother’s body indefinitely. Surprisingly, an abortion can sometimes leave more of these cells than a live birth.

Depiction of microchimerism and its implications

In Greek mythology, the chimera is a fearsome creature, a blend of lion, goat, and serpent, always female. In various tales, she is linked to the Sphinx and possesses the power of fire, making her nearly indestructible. This ancient figure symbolizes the primal mother—a fierce progenitor imbued with the instinct to survive.

In everyday language, a chimera denotes something illusory or unattainable. Yet, those of us who have carried life within us embody a fusion of identities, as the cells shed by a fetus remain within us, intertwining our lives with theirs. We transform into hybrids, oscillating between our former selves and the mothers we become, navigating the complexity of our identities.

A child born after a loss is often referred to as a "rainbow baby." My first son, my rainbow baby, was vibrant and powerful. As he grew, his needs took a toll on my body; by six months, I experienced significant physical discomfort. I sought medical help, and by the time I found relief, my blood pressure soared, prompting me to rest before his arrival. The labor lasted seventeen hours, during which he momentarily halted progress, prompting a c-section. His initial cry was unexpected—an affirmation of life I hadn’t anticipated.

Moment of birth and the joy of new life

Once he was born, the responsibilities of parenthood consumed me, temporarily setting aside grief as we marveled at our new reality. We quickly desired another child, and four years later, our two boys became inseparable companions, although they sometimes found themselves in playful conflict.

I often wonder if their fierce spirits carry a piece of their sister. Microchimerism suggests that her cells reside within them as well. After her departure, they took root in me and eventually passed into their bodies.

Occasionally, my eldest son mentions his sister. We gently inform him, “You don’t have a sister.” Yet he insists, describing her as if she were a part of our lives, raising questions about the nature of his perceptions. Is this mere imagination, or is he attuned to a deeper connection?

Symbolic connection between siblings

Research on microchimerism has revealed that male fetal cells are easier to locate in maternal brain tissue than those of females. These findings indicate that remnants of our sons persist in our bodies long after their births.

We first hold them within our bodies, then in our memories, and ultimately in our tissues, long after they’ve departed. As I sought answers in literature, I wondered if this understanding mattered. Does her presence within us hold significance, or is it simply another form of magical thinking, akin to tales of an immortal monster-mother born from men’s fears?

The challenge remains: how do we convey to our sons that their sister was real, that she lives on within them? How do we express that she was wanted, loved, and still cherished, despite our choice to end her life?

Though parenting through grief may sound somber, it is filled with laughter and joy. We share moments of levity even in the quiet hours after the boys have gone to bed, reflecting on the presence of their not-quite-imaginary sister and the wonder of her existence. Who might she have become? We look upon them as they sleep, and for a fleeting moment, we glimpse the answer.

Reflection on the bond of family and memory

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