I spent last Mother’s Day lounging on a picnic blanket under the sunny skies of the Boston Harbor — so sunny, in fact, that my husband and I sought out one of the only meager trees atop Spectacle Island for shade. It can often be cool in early May in Boston, but on this day, the heat bore down. At 16 weeks pregnant, the shape of my rounded belly under my striped sundress was only obvious to those in our inner circle who knew we were expecting. The word itself — expecting — pregnant with meaning. We were expecting so many things on that Sunday afternoon: Our first child to join our family in the fall. A little boy.
I consider myself an invisible mom; identifying with emotions of motherhood without the visible passport. I cannot take my son to the park or feed him in the wee hours or read him a bedtime story. As a culture that values tangibles, I do not fit into any recognizable group. If I answer that I have kids (a question I’m asked all too often), it’s assumed that I have a living child. The follow-up conversation is just too intense, too blunt, that I simply cannot stand to burden the person asking such a standard question with such a heavy answer. But responding that I do not have children discredits the time I spent loving my son, caring for him and nurturing him as all moms do. That answer minimizes his life. And boy, his life was anything but small by measure of how it has impacted mine.
Us invisible moms are everywhere, part of a compulsory club of which none of us wants to be a member. But unlike other moms, there are not playdates or moms groups or school meetings for our kind. We so often live our life in isolation, alienated by very holidays like Mother’s Day, where sitting at brunch alongside bustling families is pure torture. There will be no handmade card or mother’s ring or any of the hallmarks that Hallmark make standard for this second Sunday in May.
But as a mom, even an invisible one, I have a love story. After all, that’s what moms do. We love, unconditionally.
On an early June evening at a restaurant overlooking the Bosphorus Straight in Istanbul, we decided that we were ready to start our family. It was 2011 and we were entering our fourth year of marriage, having spent the first three years enjoying our young relationship and establishing our careers. But the summer came and went, and so did the one after that. We saw a fertility doctor, learned that things were sub-optimal but not dismal, and drew up a treatment plan. Month after month of treatments, each one more invasive than the last. Nothing. But we were great candidates from IVF, and I just knew that would work. I still felt a sense of control here — if I can just endure the physical and emotional gauntlet that is IVF, I know we will be rewarded with a baby.
And rewarded we were! In mid-February of last year, we learned we were finally pregnant. We met our baby at our four-week ultrasound where we very clearly we watched a mighty heart flicker rapidly on the screen. This heart was contained in a body no bigger than a grain of rice. Awestruck love. There are simply no words to describe the emotion of that experience; watching a beating heart inside of my body that will one day power our child. Power him while he chases the cat or does cartwheels in the front lawn or takes a nap in his sunlit nursery. Beat strongly as he walks to his first day of kindergarten or falls for his first crush or marries and has children of his own. That little flicker will be there through everything. After we left the doctor we could not stop gushing about that little flicker — our little Flicker — and thus his nickname was born.
Late on a Friday afternoon in April, we went to the doctor for the ever-important 12-week ultrasound, a date that so many circle on their calendar as the first big landmark in a healthy pregnancy. The ultrasound technician read the images, but uncharacteristically left the room for what seemed like an eternity. She returned, accompanied by our doctor, who assured us that there was likely nothing wrong. A strange shadow on the grainy ultrasound raised some alarm, but don’t panic; it’s probably just the placenta. But if we want to be 100% sure going into the sunny weekend, we can head to high resolution imaging and get a cleaner look.
It will put our minds at ease, she said.
We left in silence, and for the next hour I lay on the examination table feeling utterly helpless as an awful doctor proceeded to shake her head over and over again. All loaded sighs and furrowed brows. “Something is just not right,” she said repeatedly once she finally found her words. She arranged an appointment for first thing Monday morning at one of Boston’s leading maternal fetal medicine hospitals and sent us on our way.
We were not at ease.
We left that afternoon a ball of chaos, shaken to the core, questioning everything. We questioned God. We questioned what we did wrong. We questioned whether the doctor could possibly be right. She had to be wrong. This had to be a mistake. We talked with our families and pastors and friends over that weekend. We prayed and processed and speculated during a long walk around Walden Pond, Thoreau’s sacred retreat.
“Sympathy with the fluttering alder and poplar leaves almost takes away my breath; yet, like the lake, my serenity is rippled but not ruffled.”
– Henry David Thoreau, Walden
Coming out of all of our conversations from that surreal weekend, it seemed that everyone had a horror story of their own or of a one-degree connection in which they received a bad pregnancy prognosis, only to point out their beautiful son or daughter playing in the next room. While we weren’t counting on the doctor we would see Monday saying “just kidding, he is perfect,” we had come to terms with the possibility of raising a child with special needs or having to manage a high-risk pregnancy. Hope rippled, but not ruffled.
We walked in to that appointment unified and resolute. But I laid down for the ultrasound, and within 15 seconds the head of maternal fetal medicine looked me in the eye and said “incompatible with life.”
The agony that followed involved genetic counselors and placenta biopsies and waiting for tests. We learned were having a boy. And his chromosomes were perfect. His heart was strong and his brain was developing. But his spine was bent and he had no abdominal wall; his feet were clubbed and he had a cleft palate. The list of issues kept growing and my hope kept shrinking until we got our final diagnosis — limb body-wall complex. “Don’t Google it,” the doctor warned. But of course I did. And I cried for days. A lightning-strike rare condition that had no genetic link, no known cause, no available treatment, and no survivors. There were so few documented cases of this condition that our doctors could assure us of nothing. I might miscarry tomorrow. I might carry to full term. Flicker might be born alive and never take a breath, or he could be born still. We were essentially sent home to wait again; but this time wait for our son to die.
Where is the love in that?
When I think about all the ways that people can show love to one another, it’s generally through some combination of action, word or in our culture, gift. My husband and I are not big gift people, typically choosing instead to communicate love through everyday word and action. He is a big fan of food, so a well-cooked meal prepared with his favorite ingredients is one way that I show love. Meanwhile, he knows that I do not like doing dishes, so after the meal is cooked he springs into action to clean up the mess, a definitive showing of his love to me. It is not the stuff of storybooks, but it’s how our love works. We are a family of do-ers, preferring daily service to the more abstract concepts of love and care.
This pragmatist’s orientation toward doing love made loving Flicker incredibly difficult in those first few weeks after receiving his terminal diagnosis. If he was sick or injured outside the womb, we would have taken him to the best doctors and nursed him back to health. If he was hungry, we would have fed him whatever it would take to satisfy and nourish. If he was scared, we would have wrapped him up in safety and reassurance. But with him in the womb sick and injured, we simply could not do a thing. No doctor could fix him. No nutrition could fortify him. No physical touch could comfort and re-assure him. I was so powerless, a feeling that absolutely slayed me. Love became abstract, which was something all-together unfamiliar.
Eventually, though, I came to important realization: I was simply a mom living out unconditional love without reciprocity. What all moms do.
But to say that I had no tangible way to experience love with Flicker would not be truthful. Shortly after our diagnosis, a dear friend brought us a truly wonderful gift — a fetal heart monitor — which allowed us to listen to Flicker’s heart flicker, pulse, thump and gallop any time on demand. Flicker’s flicker became my lifeline to him, urging me to get out of bed each day and live life with him. It would be a life robbed of so many experiences, but a life nonetheless. I talked to him throughout my workday. We went on walks almost every night. My belly grew and it was impossible to conceal his little life from the public. I began writing to him as a way to process and reflect.
I will not deceive in claiming that this time was all rainbows. It was very, very hard at times. A sentiment about parenthood to which I think all moms, invisible or otherwise, can relate.
Before I met Flicker, my idea of balance was more aligned with the notion of steadiness. That is, not allowing myself to get too low or too high so that I can maintain a somewhat consistent state of general well-being. This trait had been one of much ribbing and confusion amongst my family, most of whom have never been quick to attach themselves to the concept of moderation. My mother does everything unapologetically BIG — talks, laughs, cooks, loves, projects, exaggerates, misbehaves — it’s what she’s known for and what draws people immediately to her. Let’s just say the apple does not fall far from the tree when analyzing the rest of the family. Consequently, my bent toward practicality and boundaries has always been a source of mystery.
But in this new normal of carrying a terminal pregnancy, steadiness was simply not possible. I also do not think it would have been healthy to repress the urges to feel the extremes. Our day-to-day was about living in the present; taking in whatever good, bad or otherwise greeted us in the moment. We learned to toe a narrow line that represented the collective average of this unpredictable oscillation between darkness and light. Dark: A horrible appointment with the NICU doctors where we were reminded of realities of his diagnosis in cold, heartless medical parlance. Light: A light-hearted beach day on Cape Cod with good friends followed by a scoop of the best homemade ginger ice cream I’ve ever had. Dark: Waking up on Mother’s Day knowing that I am going to be a mom to a boy in Heaven. Light: Spending Mother’s Day afternoon on Spectacle Island as a family, picnicking, reading and resting on a shaded hill overlooking the Boston harbor. Dark. Light. Dark. Light. And on and on we went. Over time, I gained an understanding of what this place of equilibrium felt like — seeking out joy without any tinges of guilt amidst this backdrop of sadness.
Every morning for the next three-plus months before I would get out of bed, we turned on the heart monitor and listened to Flicker. His heartbeat became our language; we could hear his, he could here mine. Beautiful. But on July 23rd, there was no heartbeat. I was 27 weeks pregnant, and I was furious. God, you were supposed to give me more time. He was supposed to be born alive. We have been so faithful. We have cared for this life and nurtured it the best we could. We have bonded with him and feel so cheated. Where is the love here?
But in a point of reflection more than nine months later, I can say that Flicker’s death was surrounded by so much love. His delivery was simply miraculous — there were some very scary potential scenarios, a near guarantee of a complicated c-section and just so many unknowns. But he came so very peacefully, no surgery, no complications. When they brought him to me to hold, it was clear that his earthly body had simply failed him. Had he been born alive, I just know he would have been in extreme pain, which would have been traumatic for both him and me. Instead, he passed away in peace, knowing only the protection of the womb. He would never have to confront bullies or naysayers or doubters. He would only know love. Of course, I have no way of knowing if Flicker felt the love that enveloped him during his brief life, but it gives me peace to imagine that he does. So that is what I am choosing to believe.
Motherhood is wrought with questions: Will he happy? Will he succeed? Will he have my husband’s thick hair? Will he play tennis like me? Will he love us? Will he love others? Will he contribute to the good of the world? Will he…..
I experienced the uncertainty of motherhood too, but my narrative is just a little different. I will never get answers to these questions, and will never experience the great gift of watching Flicker navigate through life here. But one unequivocal given in motherhood is that moms love their children, unconditionally. By that definition, I am a mom. Just an invisible one.
Today I wish all moms, invisible or otherwise, a very happy Mother’s Day.
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