Three Minus One: Stories of Parents' Love and Loss (7 page)

Your sister smiles, wipes the tears from my dirt-streaked face, smooths my hair, and dusts the grass from my knees. “I miss her too,” she says and kneels over to kiss your grass. Rising, she slips her hand in mine and we walk back to the car together. I turn around before we leave to smile at you, thankful for my beautiful daughters, and tug the door shut.

Chiyuma Elliott

I believe in the
clish
as the beer can opens.
In the deep cut of river through strata,
in coarse sand, in skin. In the new ink
on that spot on my back I can barely reach
with the sunblock.
I want their names
, I told him,
the years they died
.
In black.
Sometimes I believe in needles.

I believe in the skin’s eruptions. Quiet totems
of flux. In the young man named Omar
who sees pimples, asks for my digits.
I could be your mother
, I say. This is a lie.
My babies die. Their leaving’s a red blur
that makes my face welter and blossom.

The toddler splashing in the shallows—
I believe in her green hat. In her mother,
who looks up and her eyes say
when did you lose her?
In the way my hand
automatically reaches for my abdomen.
Which means
six weeks ago
.
The way she barely nods.

I believe in the almost-quiet. A cove
where the river slurps like a first breath.
We’ve come here because the ranch
is separating cows and calves, for miles
the air is raw with their screams.
Each cow hears her own baby’s cry
across the paddock. She moans all night,
even when sleeping. Then the trucks come.
Then everything just goes dark. I envy that.

Lainie Blum Cogan

July 2, 2013

H
annah was born eighteen years ago today.

Two weeks before my due date, my husband and I were riveted by
Braveheart
in the multiplex on Route 22; sometime between Murron’s execution and the defeat of York my water broke all over the upholstered theater seat. We rushed out as abruptly as the amniotic fluid, and I only felt mildly guilty about the mess I left behind.

We drove home, packed our bags, and sped to the hospital. Like children, we excitedly called our parents and told them to plan to arrive the next morning, as the nurses said delivery was not imminent. When nothing was happening in the morning, they injected some Pitocin to get things going, and I was slightly disappointed that my natural childbirth plans were going out the window. Well into active labor, the baby wasn’t progressing down the birth canal. Fearing she might have to perform an emergency C-section, the doctor ordered a heavy hit of anesthetics, while she was busy trying to extricate the baby.

When my child was finally suctioned out, the doctor asked, “Are you sure your dates are right?” The umbilical cord disintegrated in her hands.

That the not-crying baby was sick was obvious. What exactly was wrong would take weeks to discover. I was whisked away to the recovery room, as my brand-new baby girl was intubated and
hurried to the NICU. Seth broke the news to our parents and conferred with the doctors. In a state of utter confusion reserved for innocents faced with unimaginable trauma, I refused to see anyone. After initial tests, it was confirmed that our daughter had a herniated diaphragm, which meant among other things that the organs that were supposed to be situated in the lower abdomen had floated up through the perforated diaphragm and were crowding the lungs, which had not developed properly as a result. Her ears were set low and she was missing a rib. We learned that doctors do not like to see a constellation of abnormalities, as this generally indicates a serious genetic syndrome, but they were reticent and revealed the story only page by page, reluctant to speculate about the plot that could only be determined with genetic testing.

Over the next forty-eight hours, droplets of information would condense and slide down the foggy window of confusion, painting an ever-clearer picture of Hannah’s impossible situation. Although the doctor suspected that Hannah’s condition rendered her “incompatible with life,” they would have to wait until she grew strong enough to endure the tests that would confirm his suspicions that she would never grow strong enough to survive.

The doctor quietly told us that it was hospital policy to resuscitate this child, no matter how many times she started to fail. He had done so, he informed us, the previous night when Hannah’s frail body had gone septic. When he predicted it would continue to happen, we soberly prepared ourselves to accept her fate and fight for our child’s right to die if it came to that.

Meanwhile, we desperately wanted to bear witness to the existence of this precious child who was teaching us the most important lesson we would ever learn about being parents. We spent our days with our daughter and slept in a makeshift bedroom in a hospital lounge. We invited everyone we knew to come meet our Hannah.

At 2 a.m. on July 7 a nurse urged us to come to the NICU immediately. We quickly washed with the foamy antiseptic soap that smelled
like hospital and candy and slipped into blue sterile gowns before rushing to Hannah’s bedside.

“She’s septic,” the doctor quietly told us, and we exchanged knowing glances. We sat down, as the merciful doctor unhooked the ventilator and put Hannah into my arms. It was the first and only time we saw her without the breathing tube obscuring her tiny face. We allowed nature to take its merciful course as she died in our embrace.

In the ensuing months, genetic testing confirmed Hannah’s “incompatibility with life.”

“They lied to us,” I told my best friend from grade school, who now lived across the country. “We did our homework and ate our vegetables. We were supposed to be rewarded for doing everything right.” It simply never occurred to me that something like this could happen to someone like me, and it took some time to assimilate personal tragedy into my arrogant, entitled worldview. The best I could do was to accept that I—at age twenty-seven—had now received my cosmic quota of heartbreak. It would be smooth sailing from here.

Over the next three years, we gathered our courage and were blessed with two healthy and beautiful children, the first of whom is named Samuel, the name of the child for whom the Biblical Hannah prayed so fervently. He’s nearly seventeen now. But I was wrong about the tragedy quota. Life has since thrown us a series of calamities and trials. Rather than rage against them, I have learned to be thankful for the serene moments of grace in between. And there are so many.

I still think of Hannah every day. Together with her little sister, Mimi, I still light a candle for her every Sabbath eve and holiday. I still cringe, unsure how to answer when people innocently ask me how many children I have.

More than anything, though, I am deeply grateful Hannah was here. She drew us deeper into the humble human community that suffers. In her five short days on earth, she taught me that the most important role of being a parent—a lesson I try to implement every single day—is to be a steady and stable advocate for my children
and to lovingly do what’s best for them regardless of the personal price for me. Through her, I have glimpsed the vast perspective of the universe, which gains new poignancy as I reach middle age and my parents’ generation begins to recede: In the context of eternity, there really is no difference between a life that spans ninety years and one that lasts five days. The distinction is in the impact that life has on others.

Wendy Staley Colbert

D
uring the last trimester of my pregnancy, both the prospect of my baby’s disability and the prospect of his death frightened me. From the time I was seven months pregnant, I knew he wasn’t expected to live long. I wasn’t sure I was up to being his mother. I wasn’t sure I could handle the pain. I wasn’t sure I could love him enough and then let him go.

The ultrasound technician picked up anomalies during the second trimester in a routine exam, pressing the wand against my slippery, swollen belly over and over to get a detailed look at his abnormal kidneys. Additional abnormalities showed up as my pregnancy progressed. Subsequent scans showed six toes on each foot and an extra flap of a digit on each hand. An amniocentesis early in my seventh month provided the damning diagnosis.

“Your son has trisomy 13,” the genetic counselor said. “Trisomy 13 babies don’t live long. Each of the cells in his body carries an extra thirteenth chromosome. He will be severely developmentally disabled. He will never walk, talk, or feed himself.”

Shocked, I sat beside my husband Mark, beginning to realize the hopelessness of our son’s condition even as we felt his kicks through my cotton, floral maternity dress.

I went to my baby shower the next day, and made the hard decision to keep the news to myself a little longer. I wasn’t yet ready to reveal this shift in our world. I choked back tears and smiled wanly
as I opened pale-blue terry-cloth onesies and the stackable blocks I knew my son would never use.

We met with the genetic counselor the following week, and she reiterated that trisomy 13 is a random genetic mutation that occurs only once in five thousand newborns. Many trisomy 13 fetuses are miscarried. Most infants born with the syndrome die within the first three months of life.

I was seven and a half months along now and completely lost my appetite. I bitterly thought,
So much for skipping coffee during my pregnancy. A lot of good that did.
The impact of caffeine on my baby’s deformed body seemed absurd, but I kept up my nutritional discipline anyhow.

If we wanted to investigate ending the pregnancy, we could take our case to the hospital ethics board. My husband and I were glad this option was available, but decided we would prefer to let nature take its course. We didn’t want the potential burden of guilt from the choice of such a late-term abortion in addition to our already palpable grief and my growing fear. I worried that the baby would die inside me, and was reassured each time I felt him kick. Even worse, I worried that I wouldn’t know how to care for a disabled baby, that I wouldn’t be able to love a disabled baby enough.

A woman with whom I’d worked had carried a severely disabled baby to term only to see him stillborn. She told me, “Be prepared that your baby may not look like a normal baby.”

The mother of a trisomy 13 child whose son was kept alive by a feeding tube offered to stop by for a visit in the coming weeks so I could meet her son. Now eight months pregnant, I declined—I thought I would break down crying upon seeing the severity of his disability and felt ashamed that I might not be able to welcome her son as she so joyfully had.

A few days passed, and then my water suddenly broke as I stood up to leave work one afternoon, three and a half weeks before my due date. On the drive to the hospital, I felt relieved that my son had beat the odds so far.

I labored for hours, and as my baby’s head was crowning, my ob-gyn said, “I’m sorry—it doesn’t look good—I don’t think he made it.” I sobbed as I continued to push.

My son was born. I heard his strong cry, and I began to cry for joy myself. Our son’s scalp wasn’t fully closed and had an open wound on it, and our doctor had assumed as his head was crowning that he was dead.

We named him Max James. His eyes never opened. He had extra digits on his feet and hands, and numerous other physical and mental defects we couldn’t see. But I was relieved to find him beautiful and felt a rush of love for him, smoothing the wisps of fine hair behind his ears as I held him. He was tough, all right—he squirmed and stuck his chin out, his legs kicking, his fingers clenched into fists. He was unable to breastfeed, so a nurse showed my husband how to finger-feed him, dropping little drips of pumped breast milk from a tube attached to his finger into Max’s mouth.

When we got ready to take him home, a nurse leaned into the backseat of the car where I was strapping five-and-a-half-pound Max into the car seat and said, “Now, you enjoy every minute with him, won’t you?”

My original fear of not being able to love Max turned almost immediately into a fear of him dying. I was conflicted: I didn’t want him to die, but I also didn’t want him to live a life of such limited quality.

At home, we held Max constantly. He even slept between Mark and me in our king-size bed. As we were drifting off to sleep our first night home, Max’s breathing became congested and raspy. We could hear fluid in his lungs. Mark rushed Max into the bathroom and clapped him on the back until gobs of green mucus landed in the white basin.

Over the next couple of days, we had a routine follow-up visit with a nurse, who was alarmed that Max had dropped nearly a pound of weight. She instructed us to force-feed Max formula and recommended a bili light blanket to help treat the jaundice. Max aspirated
formula while the nurse was in our home, and before we knew it, she had resuscitated him and called 911.

Back in the hospital, the ER doctors told us they couldn’t get all the fluid out of his lungs and that Max’s time was limited. We took him home. Mark put
Kind of Blue
, his favorite Miles Davis album, on the stereo, wanting Max to hear beautiful music. While it was still warm out, Mark carried Max outside so he could feel a soft summer breeze on his cheeks. Mark held Max, resting our infant’s bare chest against his. Max seemed to calm at the feel of skin against skin.

As the evening darkened, Max’s breathing grew more labored. I changed him into our favorite outfit, sat with him in my arms on the couch, and sang “Silent Night” to him. I felt scared to see him die and even more scared to feel him die. I didn’t want to be the one holding him when he died. I didn’t want to feel his body stop moving, feel his warmth cool, hear the silence when he stopped breathing, see his stillness. I handed Max to Mark, and he to held him next to me.

A few minutes later, Max lifted his arms to us in what we would later learn was a physical reflex, but felt to us like a desire for one last hug. He drew his last breath and died. Mark and I both cried as we wrapped Max in his fleecy pastel baby blanket and laid him for the first time in his crib in his bedroom. It was the only night he would spend in his room.