Searing Pain of Loss Colors a Mother’s Days

Another Mother’s Day has come and gone, and for this I’m grateful. While I look forward to spending time with my loved ones, part of me wants nothing more than to retreat inward.

It’s not that I have anything against buffet brunches and lily corsages, but in my family this national day of recognition has come to take on a more personal meaning, standing as a gateway between our greatest joy and deepest sorrow. The week prior, we celebrate the birth of our twin sons, the week after, we mourn the loss of one of them.

Born at 241/2 weeks of gestation and weighing 1 pound, 10 ounces, and 1 pound, 7 ounces, respectively, our sons Anthony and Christian were not just preemies--they were micropreemies. This category, often associated with high-order multiples and drug-addicted mothers, also affects families who have no reason to believe their newborns will spend the first months of their lives in a neonatal intensive care unit. But 50% of all twins are born prematurely and of those born under 2 pounds and prior to 28 weeks, some statistics report that as many as 50% die. After 10 days of life and what looked to be a positive outcome for our baby Christian, we were broadsided with the worst. He passed away before I ever held him in my arms.

Four years have now passed. The tubes have long been taken out, the bandages taken off, the IV marks on my surviving son’s once parchment-like skin have since scarred over, but some things don’t heal. I’ve come to realize that my experience as mother to a preemie baby has lasting effects.

Not surprisingly, I’ve stopped taking even the most basic things for granted, especially when it comes to expectations of life and death. I view pregnancy and childbirth as an experience fraught with obstacles and peril rather than naturally effortless as folklore and idyllic media images seem to suggest.

My thoughts are with the many women each year segregated off to the quiet end of labor wards, attached around the clock to monitors and IVs, bravely biding their time as they try to prolong their pregnancies. A few extra days for some, a few extra weeks for the lucky ones. So to hear a supermodel extol the virtues of prenatal yoga, to read about spicing up sex in the second trimester, to watch a very visibly pregnant runner cross a 5K finish line ... it isn’t interesting, it’s irritating. Who are these superhuman earth mother goddesses with cervixes of steel, and why couldn’t I have been one of them? Deep down there’s a feeling that I let my sons down. My first assignment as a mother seemed simple enough, to protect them with all my body and soul. And I couldn’t do it.

Though I’ve tried to put the experience behind me, it seems constantly to come up. Like golfers comparing their handicaps, new mothers compare birth stories. This puts preterm moms in a strange position--if you do start in on your story, there’s no turning back. In my case, when people ask me how many children I have, I’m always torn as to my answer. I feel so blessed to have Anthony and his younger brother and sister that I sometimes even feel a little guilty about my grief. But it’s not pity we’re after; we present our cases as cautionary tales.

My son’s every cough, cold, change in mood, I meticulously observe, record, interpret. I’m often preoccupied with what “could” happen, ever fearful of being surprised again. As a small countermeasure on this war of control I rank baby wipes right up there among man’s greatest inventions, purchasing them by the crateful, taking them wherever I go and wiping down everything in sight--sometimes at the risk of offending family, friends and strangers alike.

Rituals are another weapon in my arsenal for assurance, some trivial, others more substantial. One such routine developed as a result of Anthony’s incidents of apnea bradycardia, a condition in which newborn preemies temporarily stop breathing while they sleep, often resulting in a lower-than-normal heart rate. Even though the apnea had long resolved itself by the time he was sent home, for several years I continued to wake up throughout the night to stand at my son’s bedside. With my hand over his chest, I reassured myself as much as marveled over the beautiful independent pumping of his lungs. It’s something I do even today with his siblings.

With the survival rates for these tiny newborns steadily increasing, there are more of us out there than you might think. Members of a quasi-secret society, sometimes with nothing more in common than the bond of a shared experience, mothers of preemies gravitate toward each other. Using a common language learned in the NICU, we use our chance encounters to compare gestational ages, birth weights, medications, time on respirator, release dates and follow-up care. With encouraging words, we exchange news regarding the long-term outcomes of these miracle babies and tell ourselves that the worst is over.

During those 101 days Anthony spent in the NICU, my allotted “touch time” with him was every four hours. From the day he came home to the present, I’ve tried to make up for the lack of contact those first few months by taking every opportunity to hug, squeeze, kiss, tickle and wrestle with him. It still doesn’t seem enough, at least from a mother’s point of view.

Thankfully, I think Anthony sees it differently. As a normal, bright and fiercely independent child with a penchant for finger painting, the traumatic circumstances surrounding his birth matter little to him. Despite being smaller in stature than many of his preschool peers, he manages to give them a run for their money just the same.

On his most recent birthday, I had the opportunity to reflect upon his courage and strong will, factors that initially helped him to survive and now thrive in this world. It’s now time for me to take my son’s cue. Only by respectfully putting aside the past can I fully share with him the joys of the present. Only by pushing past my own fears can I help him prepare to experience the rich, full life he deserves.

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Giuseppina Di Raimondo is a Los Angeles writer and stay-at-home mother of three.