What More, I Say, What More?

My husband and I each stood on the sand with an arm around the other, our backs to the waves, and looked down at what we had built together. We knew it wouldn’t last. Come evening and high tide, those waves would break closer to where we stood and dismantle what we had traveled nearly three thousand miles to face. But in that moment, things were peaceful again.

Ryan and I had flown to the coastal town of Máncora, Perú, from Santiago, Chile, where we live, though we are both from northern California. It was three and a half months after we held our son for one hour. He was not alive when I held him. Nestled inside his still, seemingly perfect body was only half a heart. We went to Peru to honor what would have been his September due date, and I went in search of a sign, even though I had found it difficult to believe in anything like signs or a plan or an open, receptive universe since the death of our son. I did not believe that everything happens for a reason, though many people were telling me that, somehow without realizing they were also saying there is a reason for a baby to die and, specifically, for my baby to die. What is the reason that two or three out of every ten thousand babies should develop only half a heart?

Back in May and through 22 weeks of pregnancy, we’d had the illusion of safety because everything had shown us a thriving, heart-beating baby and, as we knew by then, a boy. So we named him: Lorenzo. We’d call him “Enzo.” During a visit home to San Francisco, there were baby showers for Lorenzo, earlier than I ever would have had them if we still lived there, but, as expats, we celebrated when we had the chance. We took a child CPR class in English when we could. We bought 0-to-18-months worth of clothing and brought it all home to launder the day before the anatomic ultrasound revealed two chambers of his heart instead of four. While the heart forms in the fifth week of gestation, it can take at least four and a half months to see it clearly. In our case, we didn’t see it until five and a half months. That was a late May Monday in Santiago, autumn. By Wednesday, we were on a plane back to California, where it was almost summer, for second opinions and options. Everything was opposite — not just the hemispheres and the weather patterns, but also our understanding of what parenthood was going to mean. At that time, Lorenzo was still safe and warm inside of me, the only place we could guarantee his comfort. Once he was out on his own, once his lungs needed to work and his heart needed to pump oxygenated blood to his tiny body, he would always be in danger.

Stunned and shattered, we consulted specialists about Hypoplastic Left Heart Syndrome (HLHS), a severe congenital heart malformation where both the aorta and left ventricle are too underdeveloped to sustain life, and holes in the artery and septum do not grow or close as they should. There is no known cause and no true repair. Once Lorenzo was born, systemic circulation would become impossible. And there were only three things we could do, none of which we wanted to choose. We could carry him to term and offer palliative care over the hours or days he might live on his own, though my gynecologist in California did not encourage this option because it presented an ethical dilemma for the hospital, which might be obligated to intervene in order to sustain life. We could terminate before 24 weeks, which would lead to another choice: whether to induce a stillbirth or opt for a surgical D&E. Or, we could leave it in someone else’s hands as our baby faced a minimum of three violent open-heart surgeries to rewire his heart, beginning at one week old and with no guarantees of initial or continued surgical eligibility. A world-renowned pediatric cardiac surgeon told us he would not put his own child through the surgeries, which are also in essence palliative care. The head of neonatology told us about living in the hospital, treating the baby’s anxiety, and the complications that often arise when half a heart starts to ravage a body: infection, difficulty breathing and feeding, blood clots, pulmonary embolism, stroke, brain damage, organ failure, and sudden death. Given survival and eligibility, at some point a heart transplant would be required, bringing its own set of uncertainty, risks, and complications. In terms of survival, rates are unreliable because each case — each heart — is so specific and our son had certain risk factors that posed a threat to even tenuous life.

Whenever I tell the story, I want to skip that long, last paragraph because it sounds defensive, even though I am far from the only woman who has had to defend her reproductive rights this year. I live in a South American country where any form of what we did — the second choice — is illegal for any reason, even to save my own life. But I don’t want to sound that way. I want to sound like the mother I am who did what she had to do to protect her child from certain pain and suffering and severely negotiated, likely short-term survival. My husband and I chose to take on a lifetime of that pain and suffering in place of his, and on June 2 I labored and delivered and met Lorenzo. He weighed one pound five ounces, never opened his eyes, and changed my life forever.

We returned to Chile, where the due date was still September 20, 2012. I had heard from my grief counselor and a few other mothers like me (the exact number of us who make this wrenching choice each year in the United States is unknown) that the weeks leading up to the due date were often harder than the actual day. This was true. I cried as I had when my milk first came in and we accepted our baby’s ashes from a man we’d never see again and I opened up a memory box many times a day to look at pictures and footprints and a tiny hospital bracelet with Lorenzo’s name on it even though he never wore it. Just because there was so little to hold onto didn’t mean I wasn’t trying to hold on.

We knew we did not want to be in Chile, where September 18 is the dieciocho, the national day of independence that is celebrated for up to five consecutive days depending on where it falls in the calendar year. It makes the Fourth of July look like flickering candles on a birthday cake. Every public park in Santiago turns into a festival of empanadas and homemade chicha and flapping flags and costumed animals and cueca dancing and even parachuting members of the Chilean Air Force touching down in a corral amid plumes of orange smoke. We couldn’t let Lorenzo’s due date be swallowed up by flags and smoke. In order to protect it, we had to leave the country. We wanted proximity to the healing ocean, so we picked Máncora, Peru, a small coastal town closer to the equator than either of us had ever been before.

I hoped to find some kind of peace in Perú, but I also wanted that specific sign that we did the right thing — not by politicians back home or religion where we live — but by our son. I needed to feel that Lorenzo was in a better place though my faith in any such place was also lost in the rubble of our previous, innocent lives. Still, if the sky decided to open up and show us such a sign, I would suspend disbelief, bow my head, and say thank you. On the flight, I started Cutting for Stone by Abraham Verghese and read the opening line: “After eight months spent in the obscurity of our mother’s womb, my brother, Shiva, and I came into the world in the late afternoon of the twentieth of September in the year of grace 1954.”

Was that it? Seeing Lorenzo’s due date in print while physically moving toward that very day? Could it really be as simple as finally reading the book I’d seen on the desk of the surgeon who told us he would not do to his child what we had still been undecided about doing to ours? If so, what did it mean? That my child should have come into the world on that day, too? I had thought the sign would be definitive enough that I wouldn’t question when I saw or heard or felt it. What about a hundred pages later, when I read: “Hema believed in numbers; next to one’s name, nothing was as important as numbers. What is it about this day? she asked herself. It’s the twentieth day of the ninth month. No fours or sevens in there . . . Airplane almost crashes, a child breaks his leg . . . What more, I say, what more?”

The hotel sat on a nameless dirt road in between the ocean and the Pan-American Highway, which extends some 30,000 miles from Alaska to Argentina. As is often the case in coastal Latin America, seaside cabañas that travelers rent were close to single-room shanties of clay and straw and cinder blocks that lined other nameless streets. So, there was barbed wire surrounding this particular paradise and 24-hour security to patrol it. The red and white of a Peruvian flag jutted out from the hotel down the road, but otherwise there was no fanfare. Only the crash of the waves, louder than I’d ever heard them. But it was the same ocean, our majestic Pacific, that bordered much of our lives as Ryan and I each grew up in California, and it felt like a kind of homecoming. Ryan could surf it and I could float my unoccupied body in it.

Up in the sky on that dark first night was a waxing September moon, and I wondered if that was really the sign. It reminded me that when my doctor first drew Lorenzo’s heart on a piece of white paper, he used a thin, curved sliver to represent its left side. That was the moment when spider-webbed cracks started spreading across both reality and our dreams for our son. Later, when my husband asked specialists in Chile and California if there was any chance his heart would fix itself, my heart sank in the company of his hopefulness. But what was seeing a waxing moon in that drawing — the implication of regeneration where there was none — if not hopeful? Steps from the sand, I stared up at that narrow moon and down at its weakened but unquestionable reflection on the water. Maybe Lorenzo had something to do with it shining down on us. Or, maybe it really meant to show us that his heart could have shined after all. Signs, it seemed, were slippery.

Over the next four days, Ryan surfed though the waves were unusually small. I dove into the pool and let the world above disappear, only to surface amidst its undeniable beauty. In the afternoons, I went to yoga with two other tourists from England and met Ben, the instructor. He was from Oregon and had four visible tattoos, three of which were raised and new. Maybe he was looking for signs, too, and deciding to go ahead and create them. When he started class by asking us to open our hearts, it summoned me, temporarily, from my unwavering focus on Lorenzo’s heart, even though it had slowed and then gone quiet months ago. Standing stock still in the grief, Ryan and I have often reminded each other that we are the ones still here and our hearts are the ones still beating. Ben’s question worked in the same way — reminding me that I still had a heart to open when asked.

When I awoke on September 20, it felt like any other day without my son. Lorenzo had already come and gone. I tried to remember what a good friend had said when I worried about how to meet this day: Now it was a day he wouldn’t begin suffering. That was the rub: No matter what, he was never going to come into our world with healthy cries in his lungs or a long life to chase.

In the days leading up to the trip, I had wanted to think of some tangible way to honor whatever world Lorenzo did come into. We didn’t have his ashes; they were back in California with my mother, in the house I grew up in, next to my wedding album and a glass heart. But this memorial wasn’t about the materialness of him; it was about the immaterial: love, grief, forgiveness, signs, a world where babies develop fatal diseases, and our attempt to be good within it. I couldn’t think up how to represent all of that, but hoped for a simple, meaningful way for Ryan and I to recognize this day as our son’s. Would I read a poem? Would I write him a letter and fit it in a bottle and toss it out to sea? Would I say a solemn prayer? It all seemed to fall short. But after spending days walking along the stones that lined the water’s edge, I knew what we could do: write his name in stones on the sand. It would represent him as best we could — by name — and face the heavens. If the sky would not open up and show me a definitive sign, I would send one in its direction.

We walked down the deserted side of the beach holding hands. I let go when I found a large seashell like the kind I’d been collecting that week, bleached white on the outside, concave and opalescent on the inside. Ryan let go when he found a good skipping rock and sent it flying across the relatively calm Pacific waters. Our actions felt carefree, even youthful, sensations we hadn’t felt since our loss had aged us into different versions of ourselves.

“How about here?” I asked. I stood before a free rectangle of sand, parallel to the sea and already framed in scattered stones.

“It’s as good a spot as any we’re going to find.”

I knew Ryan was doing this for our son, but also for me. I was the one who needed signs and ceremony, and I think he needed me to be okay. In that moment, all either of us needed were stones, so we reached down and scooped them up. They were as large as the palms of our hands. I used the shell to start the top of the capital letter L, and we went from there, lining up the stones as they formed his full first name: L-O-R-E-N-Z-O. We’ve never used the nickname Enzo. A nickname has life in it.

Among the stones that became the letters, I found a heart-shaped one lying right at my feet — shaped by its salty tumbling into a verifiable three-pointed gray heart. It had to mean something that I’d found it on this day in this spot, but I was too focused on our task to define it as a sign. I placed it in the center of the first O to represent me and found a large, flat stone to place in the second O to represent Ryan and his skipping rocks. I wrote, “We love you,” beneath his name in the sand. I looked for more seashells and placed them face up on one stone from each letter, so that his name might shine for the seagulls and whoever else was looking down.

I hadn’t brought my camera because we’d only brought ourselves, but I didn’t want to forget the size and shape and glimmer of what we built for him. So, standing there, assessing our work, our arms linked around each other’s backs, the waves crashing behind us, we took a long, concentrated mental picture to emblazon his name as we had created it in our minds and hearts. When I felt I could turn my back, I found one more rock and replaced the heart-shaped one so I could carry it with me on this journey of my own.

As we walked away, I watched as the distinctness of each of those capital letters started blurring into another haphazard collection of stones, similar to the ones again at my feet. I knew “LORENZO” was still perfectly formed, receding in the distance from our perspective, but just as much there. That’s what our son feels like to me sometimes: out of sight but still there, perfectly formed for wherever he is now, and clear as that hour in my mind’s eye.

The rest of the day shaped up to be much like the others. The sky never opened up and that was okay. By nightfall, the moon having waxed to more than a sliver, something like peace walked with us as we returned from dinner, said goodnight to the guard, unlocked the cabaña, and prepared to close the day. Finally, I took off the heart-shaped locket my husband gave me before a heart would come to mean what it does now.

“What time is it?” Ryan asked.

I turned to the bedside table to check my watch, but it wasn’t there.

“My watch is gone,” I said in good humor, as I walked around the small, self-contained room and waited for it to emerge.

“So are our backpacks.”

Sure enough, they were no longer propped up on the sofa. My gut clamped. Without my backpack, I was also without my laptop, kindle, camera, and iPod. It also meant I was without some eight pages of handwritten notes about my son and this trip and signs. It was undeniable: Here was the sign I had been waiting for and it was telling us we were indeed bad people. We had taken our baby’s life before nature could and now we were being taken from on the day we had expected to meet him.

What more, I say, what more?

At the police station, we listed our stolen items and spelled “Apple” for the police chief who had never heard of the word in association with a computer. I madly scribbled as many make-up notes as I could, though I suspected I would need different words to tell this part of the story.

By morning, I no longer thought the message was that we were bad people. It was less specific than that. Instead, I only saw how random it all was — go to dinner on the due date of your lost child and discover that someone has watched and robbed you.

I spent an hour walking the mile or so of town that bordered the two-lane highway and passed out fliers offering a cash reward for the return of our things. As I was about to head back to the hotel, Ben, the yoga instructor who’d asked me to open my heart, waved from a three-wheeled mototaxi and hopped out. He took the last remaining flier from my hand and, looking like he knew something I didn’t, stuffed it in his pocket before pulling me aside.

“You have to let it go,” he said. “The stuff, all of it.”

He couldn’t begin to know what “all of it” entailed, but I was willing to listen. We walked off the highway to a short set of steps that looked out at the narrow canal below. Ben made a motion with his hands, as if he’d dropped something imaginary. “Once you do that, you’re free,” he said. “And you’ll see that so much comes back to you.” As I’d done for nearly all the days since we learned about Lorenzo’s heart, I started to cry.

We sat down on the steps. “Here, blow your nose,” he said and handed me his orange scarf, in all likelihood crafted somewhere nearby.

I took it and dried my eyes instead.

“No, let it out. Don’t take any of it back in.”

So I didn’t. I blew my nose in my yoga instructor’s scarf as we sat close to the only road that linked the country where I came from to the one where I now lived, and the knowledge that, for a short time, Lorenzo had traveled with me through both.