The Due Date is on the Horizon in Yet Another Country

When you become pregnant, one of the first things you try to figure out about something so mysterious is the baby’s due date. The excitement builds. The dreams begin to take shape. When will this little creature come into the world? What time of year will it be and what kind of baby clothes will best suit the weather? What astrological sign will he or she be? What are fun birthday party ideas for whatever season it happens to be in whichever hemisphere you happen to be living in when your baby turns 1 and 2 and 10?

You see, this is how far the mind goes just finding out you’re pregnant. Once you pass the end of the first trimester, it goes even farther, to what he—because your doctor is confident it’s a boy—might be interested in, who he might look and sound like, and what it is he might show you about the world. After the anatomic ultrasound, it goes farther still… In our case, the anatomic ultrasound is where we learned about our son’s severe congenital heart defect, Hypoplastic Left Heart Syndrome (HLHS). Terror built. Dreams started cracking.

I found his name on a bench here not too long ago.
I’ll include some other bench art coloring
the streets here in Santiago.

Four days later on another continent, Ryan and I made the hardest decision we’ve ever had to make and we made it as new parents. We live with that decision every day and some days, for me, our anguish threatens to override the certain suffering and uncertain survival we spared our son based on the information we gathered from the specialists we consulted at two top hospitals in two countries.

In ten posts about my son, I have yet to link to his condition directly, as I have just done here. Honestly, I’ve been terrified to do so. I fear it opens us up to direct assessment and potential judgment although any of you can just as easily read between the lines about we had to do and run a search about his condition (with which I have labeled each post) and find the same information we did. Even though I find it to be limiting, I linked to the American Heart Association because my doctor directed us there and warned us about how much inaccurate information lives online. Our surgeon reminded us that statistics are statistics; the outcome of each case depends on each heart.

 

But I came back here to be honest, so I’m going to be. I’m scared that you will think we didn’t fight for our cherished baby. I’m worried that you will assess his condition based on a few links online and determine with some sense of confidence what you would have done and that it may be different than what we did. I’m terrified you will think his condition was fixable. I fear you will judge me. I’m sorry to admit that to you because not a single one of you has yet to show me anything but compassion in whatever form you are capable of showing it. But what if I tell you more?

Some of you held onto hope during those horrible days when Lorenzo was still growing inside of me but we knew his heart was not going to function on its own in our world. You told me you thought he chose us and that we were here to guide his every breath, perhaps implying we should let him fight for those breaths. You told us we could still be his parents and that he could still have a good life, perhaps implying we should give him life no matter the shape or condition or length of it. You told me things that were meant to be helpful, but you told them before you or I knew what we were going to do. Now, those words ring out in my head sometimes. I have to keep breathing as the ringing subsides and I remind myself why we chose what we did.

 

Every story/every choice is unique; that’s why the preservation of reproductive rights is so paramountly important right now. I think the uniqueness is what gets lost in the shuffle a lot of the times when politicians argue and a contingent of uterus-less men often of a certain age, race, and faith says things about what women not only of all ages, races, and faiths, but also circumstances, cultures, classes, and medical conditions should do with their uteruses. I’m going to link to a few unique stories so that uniqueness is clear:

* “Un-bearing” by Mira Ptacin and published by Guernica

* “Knocked Over: On Biology, Magical Thinking, and Choice” by Martha Bayne and published by The Rumpus

* “The Only Good Abortion Is My Abortion” by Maggie Koerth-Baker and published by Boing Boing

* “A Voice for Shelby” by Erin Greenough and published by A Heartbreaking Choice

 

Ever since this happened, I’ve looked for other narratives in order to make sense of my own, knowing full well there is no other narrative that matches ours exactly. These stories, like every one of us, are too unique for that. Still, the final story, about Shelby, is as close as I’ve found to what we experienced with Lorenzo. It’s as close as I can come right now to telling you exactly what happened. I think all of these women—these mothers—are incredibly brave. I think their publishers are incredibly brave. I have been strengthened by the bravery and strength of character and love of child it took for these women to write publicly.

I am trying to muster a similar bravery and strength, but in my public writing about my son, I am slow to articulate that week of our lives—mine, Ryan’s, and Lorenzo’s—when everything changed. Privately, I am writing out every excruciating detail, so that I will always know what happened and so I can come back to our choice when I need to. One day, publicly, I hope to help other parents who make and come back to their decisions. Maybe, just maybe, I can also change some minds—and hearts.

 

It’s September. Our son was due to be born this month, in a matter of days from now. Ryan and I are planning a trip up north to Peru to honor him and to try to find some peace alongside the Pacific Ocean and together as two during a time we were preparing to become three. We are already, in the hardest way possible, a family of three.

If I can, I will tell you more about that trip when we return. If I can, I will write more in the meantime. For now, the due date looms, I read these essays when I need strength, and I continue to tell myself what we did even though I can’t tell you, even though all I do is tell you. I continue to believe we did what we had to do as the only two parents of our only son with his only heart. Maybe for that reason, he did choose us. Maybe–and oh God, this is where it’s especially hard—we still deserve to be chosen again.

On Being “Better”

I think I need to make something clear: I am not better.

The pain has not lessened. I miss and love my son more than ever. I am not “handling it all really well,” as I’ve been told.

 

I know most of you know Ryan and me personally and love us and only want us to be happy again. I know I’ve shown you those glimmers of lightness and hope that are possible. But this process is not linear. As my friend Suzy says as she draws her finger through the air, “it’s wavy and circular.” She’s right. As a diagram from my grief counselor shows, grief is a wheel. As another shows, grief is also a concave arrow that loops over and under circles of shock, anger, and hope. I’ve been proud of us for not losing sight of HOPE—it’s always there, painfully small on the horizon, but there. But that does not mean we are better.

As many of you know, part of the reason why grief is so isolating is because it is so particular. Our lost loved ones are particular. While I don’t necessarily subscribe to the standard phases of grief arriving one after the other, the emotions embedded in those phases make sense to me because anxiety, depression, yearning, and guilt make sense right now. It also makes sense that while I have moved through disbelief and am settled painfully in awareness, I am still far away from acceptance. I still circle back to disbelief. I still feel panic. I still deteriorate and protest. I still withdraw and relate to that floaty feeling of “unreality.”

 

 

I feel the need to clarify all this because I’m feeling some pressure to be better. Some of that pressure is self-imposed and some is not, but it’s descending on me here in Month 3, which Suzy says is also one of the hardest. That actually does make me feel a bit better. That validates why the majority of Week 12 has felt a lot like Week 3. Like I said, it’s not linear.

Yes, I am in the process of “healing.” Yes, I sound better sometimes. Yes, I do not prostrate myself at your feet and wail though I imagine doing so sometimes. I can still be a civilized person, but does that mean I’m “better”? What is “better” anyhow? Even in my mind, I can’t quite characterize it. Does it mean I shower and get dressed? Does it mean I laugh with a friend? What does it mean when I do those things one day and the next cancel plans I made on the day I laughed so that I don’t have to be somewhere public and sunny on the day I did not shower and get dressed? What does it mean when I am in conversation with someone articulate and realize I have just stopped speaking mid-sentence, with no intention of finding the right word or finishing my thought? What does all of this mixed together mean?

 

 

Some of you have the answers. I should volunteer. I should go back to teaching. I should do anything other than go to bed forever. I love your optimism and positivity. I was one of you a few short months ago. All I can say is I rescued Ruby and I’m writing a book about my son and coping and reproductive rights. I’m making sure my husband and I eat healthy dinners. I’m not slitting my wrists. Were I to return to teaching, I would be horrible at it. I would look at my students of English as if I had the right words. And I don’t. So, it doesn’t go without saying that I am grateful to be in a place where I don’t have to just yet. We are far from home, but can afford my staying home.

Others of you, like me, don’t have the answers. From the beginning, I’ve used words to say that words are inadequate for this. In my private documentation, I’ve used precisely 34,161 words and I’m chasing more, though none will answer the biggest questions of all: Why does this present in 2 or 3 or 4 out of every 10,000 births in equal measure the world over? Why did this happen to our son? Why was the left side of his heart “underdeveloped”? Why were his aorta and left ventricle “too small”? (In our case, there was no visible aorta at all.) Why did “the holes in his artery and septum” not “properly mature and close”? I’m quoting the American Heart Association, but I think “underdeveloped” especially isn’t the right word; it implies at least a fair amount of development. When my doctor drew our son’s heart on a piece of paper, the left side looked like a mere sliver, a Waxing Crescent Moon. It looked like it never developed at all. So, there again, even science and medicine and diagnosis can’t give it to you straight.

 

Because there’s no ultimate answer, my hope is that my attempt to find the words helps other parents like us one day, even just for a little while. But even that is not my ultimate hope. My ultimate hope is for healthy babies the world over. Then I will be better.

—
“Grief doesn’t hit and run; it stays and sometimes for a very long time.
Anyone with a heart knows that.”
—Rococo by Adriana Trigiani

Glimmers

I want to say thank you to those of you who read this, who follow our journey, who respond in beautiful ways, who bear witness to this grief, as beastly as it is, in order to help me honor my son, as compact as his life was. When you tell me you read these words and that they affect you and that you hear me, it also helps me feel less alone in this, which is a gift during a long span of days that have added up to two and a half months without Lorenzo. To all of you who have emerged and stayed close, I say thank you.

Valparaíso, Chile.

A friend from New York deserves an extra big thank you. Mr. Jason Valenta flew in last week to make me smile, distract me with his gorgeous wit, and reminisce about when we first overlapped 12 years ago. We were both in our early 20s, both from San Francisco, and both working at Lotus the summer it opened in New York City. It was 2000—a decadent, distracted era—and I knew I was living a “time of my life” as it unfolded. I didn’t need reflection to know I would never stand in exactly that spot again, outside a top nightclub, clipping or unclipping a velvet rope, in control of something as coveted and out of reach for the layperson as entry. It was where “J.Lo” turned 30. It was where I first realized how far money and beauty could take you in a city like New York, chock-full of money and beauty. It was where I was young.

Where street art is in abundance.

It was my job to hold a clipboard with each owner’s guest list and to “make it pretty inside,” as one owner put it. I did for that summer, as I teetered on heels and the sun set over the Hudson River that bordered the Meatpacking District. When we got off work in the wee hours, Jason would hook me and my broken feet onto his back and carry me down the street for a shift drink. From the moment we met, he taught me how to make it in New York or at least dared me to go down trying. Jason never did go down. Today, he is as amazing as ever with as amazing a job as ever. I headed back to California a few years later for my own comfortable version of amazing, but for those hot NY nights, he showed me how to serve (“left to right”), what to order (“something red and fabulous”), and where to do it (“The Tapioca Room, honey”).

As are these hillsides.

He is no stranger to the Southern Hemisphere, so when business took him to Buenos Aires recently, he popped over to Santiago for a few days to lift my spirits. We ate at all the good restaurants, talked about Pablo Neruda, drooled over the views from the tippy top of the W Hotel, and escaped to Valparaíso for a particularly sunny day sandwiched on either side by 48 hours of rain. We took steep, rickety trams up two of the magical port city’s some 41 hills and walked others. During its heyday, “Valpo” was known to some as “Little San Francisco,” and if we didn’t feel right at home with its colorful murals, endless hills, nearby Pacific Ocean, and laid-back bohemian vibe.

Reminiscent of SF’s Painted Ladies and power lines.

Around each corner was another masterpiece. If windows were broken or siding rusted, those cracks in the exterior provided another vantage point. The colors were just as bright and the magic of a city that undulates on its own waves just as uplifting. The street dogs even seemed to have a different gait than the ones here in Santiago.

Could this four-legged friend be Ruby’s papi?

Ryan and I were able to breathe deeply in the way proximity to blue ocean, crisp air, and new discoveries can. So, I embed a few of those discoveries here, to add some flair to your day and to prove that Ryan and I still see in color. We welcome the glimmers—of light, of sound, of salty air, of hope for more carefree days like this one to follow.

I’ll take the glimmer wherever I can find it.

But that does not mean we don’t still have our jackets on, the ones we put on the day our son died. So, we smile in mixed company and show the world that we are still here. We seem to be handling things well because we can seem to be handling things well. I know just as assuredly that our summer of innocence is over as when I knew it was underway. Jason has witnessed both: the young girl who didn’t know which way she was walking on the streets of New York and the wizened woman winding her way up foreign hillsides.

Good advice: “Turn off the TV. Live your life.”

Twelve years ago, it was all ahead of Jason and me: the ecstasy and the misery of being young and breaking even in New York City, falling in and out of love with our adventures of choice, and meeting up in Paris, San Francisco, and now Santiago. Much more is still ahead. We are planning to meet up in Buenos Aires next. While that may only be a scant few months away from now, it is a longer stretch of time than the one I have lived through since May 28, when my life changed more quickly in 12 hours than it has over the past 12 years. So, who is to say who we will be at that next rendezvous?

A tram eyeing the grand Pacific.

I do know it was lovely, for a few days, to take off our shoes and let Jason carry us off somewhere. But eventually you come down the hill, the sun sets, you pull the jacket close across your chest, and in some strange way, that is when things feel balanced again, with the grief back in place and the quiet restored because as much as we love to try, it’s hard to be the people we used to be.

 

This Is My Tribute

Writing this is all I do. Writing this is everything I do.

I journey here and I journey to my parallel, private writings about my son, and those are my main avenues to any real sense of “arrival”—that feeling that you are interacting with a larger aspect of the world. I no longer get that feeling from teaching a class, say, or interviewing someone for an article. I’m (not) sure I will again one day, but for now I arrive right here, at a writing table that has traveled from New York City to San Francisco to Santiago.

I have to come to it, sit at it, and open the pages that talk about Lorenzo, and circle back over the week where we had an ultrasound in Santiago on a Monday afternoon and I delivered him on a Saturday morning in California. I have to go back over it to understand and come to terms with the information we gathered, the impossible decisions we made as parents, the expressions on the faces of the doctors and the nurses as they told us we were still good parents, the sense of how grave everything really was because of the kindness that was extended to us from all sides, and the once unfathomed emotions that are now part of the rest of everything. I have to go back over it because it’s impossible to accept what happened on a Friday afternoon into Saturday morning without first understanding what happened on Monday and Tuesday and Wednesday and Thursday. For now, those days are still very private.

I reach out from that privacy as I can. I write this. I access a compassionate community I never knew existed: a series of beautiful people I have sought and found through a process that began with a hospital-appointed social worker in a delivery room and continued through calls to three grief counselors who all called me back immediately. The process included somewhat desperate emails to two other mothers like me who I hoped might help me deal with the impossible emotions that come tethered to the decisions we had to make as parents. The process led to Ruby. The process then hit a wall, as I gathered information for some dozen professional therapists scattered amongst all three of the previously mentioned cities my desk has resided in, only to never reach out. Really, I, no longer sure of where to turn to get the emotions out, hit the wall. I found the acupuncturist instead. This week, I’m drinking grapefruit juice to help my liver, which I’ve learned is also responsible for filtering our strong emotions, our extreme sadness or fear or happiness.

Like that week, the process also circles. I email the other moms, I walk Ruby, I go to the acupuncturist, I sit down here. A few circles ago, a mom asked what we were planning to do in tribute to our son. Very early on, I thought we would hold some sort of ceremony in California soon after, where he was made on a first anniversary in Carmel (it always seemed very meant to be that way) and where he came to rest in my arms in the hospital where I was born (as it never seemed meant to be). But it would have been lodged forever in the still raw wound of this. Since then, Ryan and I have not been in a rush to figure it out. Lorenzo lives in our hearts always. He taught us that our life here together is but a nanosecond, but that that doesn’t mean we don’t have to be patient.

Recently the same mom shared that she reads about Lorenzo here and suggested that perhaps my writing this is my tribute. I love her for saying so, and I think she’s right. I think it’s always been about that, consciously and not so consciously. My uncle put it another way—that it feels religious. That is not to overestimate my own writing, but it is to say that two people (one whom I’ve never met and another who has known me my entire life) see something lasting here that I want to be seen. That in writing about Lorenzo, he somehow travels out of that anguished week and through me and into your minds, however you picture him or gain meaning from his life.

I’m learning that there are many ways to tell the story of grief, of losing, of who the person who changed you so categorically really was. I don’t know who Lorenzo was going to be. He was not going to be the healthy-hearted boy I keep dreaming about when my mind ventures too far from the realities of that week. That would be as much a fantasy had he lived outside of me as it is to me now. But I do not know what he would have been like or funny things he might have said if he lived long enough to see humor in the world or all the terrible pain that would have led up to then because we decided to bestow it upon him. I can only tell you that he and babies like him are so loved, so missed, so whole in our minds it’s as if they grew and ran and laughed. It’s as if they lived entire lives before they spiraled back down into the moments when we lost them. They did live their entire lives.

I don’t expect you to relate. Sometimes I can’t even relate to other parents like us because I catch one different detail and spin out from there… Oh, but she didn’t deliver. Oh, but he wasn’t her first child. Oh, but she didn’t have to make that choice. I’m sure the delicate bridge we’re walking across teeters when they arrive at the differences in my story. It makes us ask: How do I live through this exactly if no one else did exactly? These bereaved journeys are terribly unique. But as much as I search for our story out there, I don’t wish for anyone else on the planet to know exactly what Ryan and I know exactly. I only wish that we continue to see one another across our respective fields of adversity. That is what compassion is. That is what we try to share. That is me writing this to you. That allows me to have read the enclosed Elisabeth Kübler-Ross quote, given to me by a beautiful friend, and to understand instantly its meaning.

 

The Needle and the Dog

In thinking more about what helps after losing Lorenzo, I’ve landed on two things. Beforehand, I should say that there are the givens, and I value them more than ever. My husband: his love and our communication. My mom: her patience and unconditional support. Our nearest and dearest: their letters and conversations. Without these people, I am a blind beast in a cave because that is often what the grief seems to resemble–a new creature’s skin I keep waking up in and learning a different aspect of each day. In addition, there are two specific courses of action that are helping, and they involve a lot of needles and a fair amount of dog hair.

Let’s start with the dog: Ruby. Ruby Girl, Rubicon, Rubes, Ruby Tuesday, Rubik’s Cube, Ru Ru Rooster… the nicknames are endless for our little “Rubia.” Like so much recently, I never saw her coming, and now I can’t imagine a day without her sweetness and play and that face!

 

When Ryan and I were still in California, reeling from this sudden sharp turn our lives had taken, he suggested, partly in jest, that we get a dog. At that point, all we knew was that we were indeed coming back to Santiago and that we were returning without our son, who was supposed to be born here in September. How on earth we were going to get through the days that followed was as mysterious to me then as how stupid movies got made and how it was that there was so much unattended suffering on the planet: the extremes your mind goes to when it can’t process the here and now. So, the second he said it, I held onto it for exactly what it has turned out to be: a lifeline.

We arrived back early on a Sunday in July that happened to be Father’s Day. After a foggy dawn, we returned to our apartment, which I had left some two weeks before when there was a very real possibility I would stay in California and never see it again. I put a card on Ryan’s pillow. I had had my first Mother’s Day the month before when we could celebrate Lorenzo with an “unbridled joy” that I put in quotes now because it feels foreign. I wrote the card because he is a father now and he deserved something that recognized that even though we were so very far way from joy. Perhaps, especially because we were.

Three days later, on the 20th, the day that would mark our due date in three months time, we got Ruby. We owe it all to an expat friend’s husband, a professional dog trainer who happened to know of a litter of puppies way out in a barrio by the airport, and they needed homes. Because it rained that day, he was free to drive me there to meet them. We walked into a muddy front yard and found six frolicking pups, their mom and dad nearby and seeming as worn out and proud as any new parents. I hadn’t known what to expect to see or what I was looking for, but I met this little lady, regal in her calm temperament and gorgeous as ever with that fine white line running down her face, which looked to me like a line I should follow. I held her, put her down, and watched her scamper around with the pack I would be taking her away from, but made a promise to her and to myself to give her a good life. So, when the trainer said, “Okay, Jenn, which one do you want?” I knew.

 

Minutes later I was back in the passenger seat with a puppy on my lap and no leash or collar to speak of, much less a piece of kibble. We had only been going to look at the puppies, after all, but isn’t that how life happens? We can never truly be prepared. We went to the vet right then and there, and got her first round of vaccines, the leash, and the food. When Ruby and I finally headed home in a cab through the rainy streets of Santiago, we were alone together for the first time and it felt like any good adventure does: exhilarating, nervy, and semi-comical. Then Ryan got to meet her, and we introduced her to her new home, took a walk as a family for the first time, and named her (to Ryan’s credit, she is blonde/”rubia,” after all). “You got a good dog,” he said when we finally sat down to eat and I realized that for the first time since this started, my mind had been focused on something else.

She is my day. I wake up in this new strange skin, but I also wake up thinking about her. We walk, we play. She gets me out of the house and gives me purpose. Much-needed chemicals in my brain release because she makes me smile and inspires me to invent actual songs about her and actually sing them to her, aloud. She needs me and I need her. She is our family. When I hold her leash I see a symbol for that lifeline she truly is.

 

It’s hard to leave her. She cries and I want to, but we’re working on it. I do leave her twice a week for two hours to see my acupuncturist. As I told you last time, he is the one helping me see this as a life experience. He is the one doing the body work because that is where so much of the trauma is. I spent a few weeks trying to find a therapist, thinking that’s what I needed. I still may and I understand people who do. But I held back because I did not want to make this about my past or more words. This is about Lorenzo and his loss and communicating with Ryan and about preparing how little we ever really can for our future. So, when a good friend said I needed a laying on of hands, I knew she was right. I needed energy work and realignment and for someone to look at my tongue and see that I’ve been thinking too much and take my pulses (yes, pulses) and send energy to my lungs because that is where my sadness is.

I summarize–the practice is so ancient and the effects so profound, that’s all I feel equipped to do here. All I know is the first day he put a row of six needles along my abdomen, which had been so hard for me to look at, and yesterday he put five needles in my left foot “for my heart,” and in between those two sessions I have made many connections, including but not limited to the abdomen, where Lorenzo lived, and my heart, where he will reside forever.

 

Right now, Ruby and the acupuncturist are helping. Ruby is the way I see and explore the world outside, and the acupuncture is allowing me to sink into the internal world of the body and get out of the way of its healing. Somehow, somewhere in between, I am getting through the days.