The Filter and the Path

You cannot live through this and see the world the same way. You have a “bereaved parent” filter now, and it’s hard to believe it will ever be lifted from what’s in front of you. That new viewpoint is part of the overarching lesson… in keeping priorities aligned, realizing what’s worth worrying about and what isn’t (with far more now in the latter category), and hoping that I will be a wiser, more compassionate person as I continue on. After all, as Ryan says, we are both still here. It’s shocking that I need that reminder sometimes, but I do. Some people even say I’ll be a better mom now, and that may well be true. However, it is not a step anyone would volunteer to take on the path to parenthood. And I would have been a good mom without it.

Another version of two paths: Hometown, California…

 

It is a step toward a different kind of parenthood because it is a step forward without Lorenzo. I’ve written before about the alternate reality — the one where my ultrasound on May 28 shows us a healthy heart — and we continue on with stroller shopping and nursery organizing and I finish writing a novel about grief, as if I have any idea what I’m talking about. Two months out, I’m realizing that it’s not just one fork in the path. It’s not simply the “with” or “without” Lorenzo path. So many things stem from that division and continue to determine a different kind of future.For instance, the novel I’m writing no longer makes sense. I did finally take it out of the box last week, feeling ready to do what’s needed to make it true. But I don’t see the nearly finished book I put down a few months ago. I see a giant mess and I’m not sure if that’s the depression or trust-worthy judgment talking. Much has clarified itself recently in my world, but I can’t assess how that clarity is at work in the world of this novel. Regardless, I can’t look at it without the filter on. In the meantime, my document about Lorenzo has doubled in size. That is where my energy is going as the path continues to fork. Perhaps the path where I write a novel is now one where I craft a memoir — and I never could have seen that coming.

Last week, I also started acupuncture. Being given the sage advice to find help wherever I can, I’m trying it out again. I told the acupuncturist our story, that it was due to “bad luck,” as one of my gynecologists back home said — after (as I must remind myself) he said that it wasn’t anything I ate or drank or did or didn’t do. Slowly, the acupuncturist shook his head. “Not bad luck. An experience.” I’m not sure I would have been ready, even a week earlier, to hear it put that way, but for some reason I could accept that interpretation. The filter, while always on, lets certain things through at certain times.
I realize I’m also writing here through that filter and it must be hard to read. It’s depressing. It’s painful. It’s a nightmare you might not want to get too close to because, let’s face it, it sucks up close. I don’t blame you. I hope this post also reassures you that while there is no denying the hell we’re in, I am trying. Trying to write, to prioritize health, to believe that I will travel from step to step because I now understand that’s what faith is. In kind, I finally got my period. I overshare that piece of information because I told you I was waiting for that first step forward with a stabilized system. In the meantime, it was limbo. It was purgatory. It was spinning around and around in place. Now that particular “in between” has passed and I am very, very relieved.
…and close to home in Santiago.

I am in a new “in between,” a new offshoot of the fork, as I wait to be pregnant again. I won’t be chronicling those next steps — it’s too terrifying to share here and potentially have to unwind again. It will be a long time before we hold another baby in our arms and, for as much as I have shared, it remains a private journey for us. We appreciate your love and support as much as ever, even if I go quiet about the milestones for a while. Just trust, as I try to, that there will be a happy day someday when I can share more about a healthy heartbeat joining our world.

 

In the meantime, the forks keep appearing. The timeline keeps unfolding differently. The months of the next calendar year become potential due dates, even though I try to resist that urge to define the future or let “May” or “June” or “July” mean anything other than “May” or “June” or “July.” Or, on the other path, let those months become markers when Lorenzo might have been doing X, Y, or Z. Still, it’s hard to make commitments, to have any idea where our family will be or be able to travel to or what we’ll be able to participate in. A family event where I might have passed a teething baby around to meet our relatives is now one I may not be able to attend at all if Ryan and I are fortunate enough to be welcoming another child. Or, we may be all too free to be there because that child won’t arrive for much longer than I am willing to feel prepared for right now. We just don’t know. You can see only so much through the filter. The forks reveal themselves only so far ahead on the path.I realize I’m giving you two metaphors when strong writing typically calls for one. Like I don’t know which book to write, I don’t know which metaphor better helps you to understand. It’s part of the division. Maybe, in giving you both, you understand a bit better how I see and where I walk.

No Reservations in Hell

 

A stranger’s leftovers, Nice, 2007.

My husband and I keep meaning to go out to dinner. I’m not sure what it would prove. That we’re still normal people who didn’t just change in every way? That we can still enjoy a good meal amid the company of strangers?

The last time we tried this was nearly two weeks after we lost Lorenzo. Ryan and I were spending nearly every minute together, as we did those first few weeks, and after a follow-up appointment with my OBGYN it seemed like not a bad idea to go across to the mall to get him some work clothes, and then why not just go across the parking lot to grab dinner? How normal, that progression of thought that got us there.

Losing Lorenzo was still every conversation, every gesture, every reason behind every tear, physical collapse, dazed expression, and moment of waking side-by-side. In many ways, it still is, of course. But we also have to function back here in Chile. We have to talk about grocery lists and walking the dog. There, heartbroken in California, we were still weirdly in a place we now vacation to, technically. We had the luxury to grieve in each other’s company for hours and hours at a time, whether we were sitting in the backyard or picking out Khakis at Macy’s Men’s Store.

So, we went to P.F. Chang’s. We ordered far more food than we could eat. And all I saw were families with children. It didn’t matter if the children were college-aged. I saw mothers and fathers and the people who made them into mothers and fathers. Those were the only possible cookie cutters to fit these strangers through. I stared. I imagined the scenarios for their gathering at a table or two away from us… Stanford graduation? Once a week family meal? Early Father’s Day celebration? They looked innocent, un-grieving, though now I know better than to presume who hasn’t lost, perhaps just as deeply as we have. I had to force myself to look away, to steer my focus back to my husband and our meal. But I wasn’t there.

—

We haven’t gone out to dinner, just the two of us, since. The past few weekends, we’ll say it: We should have a date night. We should go out to such-and-such place. But all I’m thinking is that we went there the night before we got the bad news or do I really want to be out in public when the crying starts up again? Like it did the other night, which marked another full week passing without my period, without that first step forward into the future where it’s possible for this body—that so catastrophically failed to protect our son—to create a healthy life.

Fortunately, I had already decided that pajamas, the couch, Ryan and Ruby close at hand, and a motley pasta were far better ideas than dressing for public, ordering off a menu, and watching dozens of families dine since Ryan and I prefer to eat around the time parents with small children do (7pm) versus when most Chileans under the age of 80 do (10pm). It was always one of the things I loved and looked forward to about it here: 1) That restaurants were kid-friendly places and 2) We wouldn’t be the only family keen on the early-bird special.

So, we still haven’t had a date night. That isn’t to say we don’t set the table at home and talk about how we’re doing (by that I mean how we’re really doing) and feel secure knowing the dog is lounging on her bed nearby and things are at least right inside our home. They are rarely right out in public these days, or in the room up the road where I found out our baby had a fatal heart condition, or where it was confirmed in another room on another continent, or anywhere in the universe that allows babies to suffer and die. That does not have any suitable arrangement.

Birthdays, 2010, Waikiki. It’s boggling how innocent we look.

Because the shortest version of the story I am sharing with you is that my baby died. My. Baby. Died. That is the entire story. That is the change in me and the way I see the world. That is both my fear actualized and my fearlessness because I dare the universe to ever wage war against me again. I dare anyone to take on a bereaved parent. Unless you are one, you will never truly understand and that’s a blessing. That is also a shorter version of the story. Though I love you for trying and helping.

Going out to dinner—the carefree distraction you need to possess in order to do so—it’s simply one of many normalities that no longer make sense. Like celebrity gossip or Coca-Cola or social media. Like anything other than my son having lived.

Another way to say it: I’m still very much in Hell. That’s how I’m really doing. And I suppose you just don’t take ‘Hell’ out to dinner.

 

HELP (as Noun and Exclamation)

I’ve written to you about Lorenzo, our son who was only safe inside of me because there his lungs didn’t need to function on their own and his two-chambered heart could suffice. His little body received all the oxygen it needed from my placenta. He never knew life outside that close, warm space. He never had to struggle for air. His brain was never deprived of the full doses of oxygen a four-chambered heart is designed to supply. And when I finally saw his beautiful face, it was at peace. I focus on these realities when the doubt/guilt/comparisons/questioning/horror creep in. It’s part of how I reach out for help because a dear friend told me recently that’s what the scarier part is: asking for what you need.

I thought I’d share my thoughts on “help,” both in the sense of what words and gestures of love have helped me and Ryan through the last seven weeks of our lives, as well as where I’m floundering… where “Help!” of some form is going to be needed. At the moment, I’m still bracing myself against the dark fence, looking for the contrast of light.
First, the positive, the half-full, the gratitude, the fresh flowers on my desk in Lorenzo’s vase:
• “Grief chooses us,” said by a mother who lost an adult child. I knew the daughter well and now, after the ten years since her tragic loss, I know the mother well. We’ve worked together closely toward the same end: cancer funding and research. But perhaps I have never truly talked to her until we talked about loosing our children. The segments of our grief are very different. She lost an only daughter on the cusp of the kind of life that true kindness, intelligence, good humor, focus, and beauty prepare you for; I lost a 1 lb, 5 oz, 11 3/4 inch son who had his father’s mouth, my nose, never opened his eyes, and should have had every potential ahead of him… first steps, laughter, a healthy body in motion chasing down each dream he dared to muster. Both of these futures were cut short, leaving parents to wring their hands, ask why without any expectation of an answer, and find whatever ways possible to keep carrying on WITHOUT, which is now a state of being. Her comment liberated me from the idea that I should be grieving a certain way, that my own progress could possibly be measured against anyone else’s, even hers. Of course it can’t. She is the only mother who lost Sara. I am the only mother who lost Lorenzo.
• “Your babies are waiting for you,” said by possibly the most inherently good and generous person I know. Whatever she or I or you believe, I believe in this idea. In this HOPE that the future is out there, waiting to form and become our destiny. Maybe Lorenzo will guide them now, his younger siblings, if we are so blessed. One day, I will tell them about their older brother and protector.
• “Don’t have expectations of yourself because the process is not linear,” said by a grief counselor. This is why yesterday was harder than the day before. This is why I don’t know what to say when people hope that with each day it gets a little bit better. This lets some of the pent-up air out of my lungs. This has made it “OK” to lie on the couch at 7AM and pull a comforter back over my body and pet my dog at my side and pivot from there until the afternoon. There is a novel looped through a binder in a box under my desk. One of these mornings I will lift the lid, reach down, and start again, but that morning has not arrived yet. It is a novel about love and loss and grief. Before this, I thought it was nearly finished, after spending two-and-a-half years writing it because I thought I was close enough to grief to do so. I know picking it up again means readying myself for a different kind of book.
• “They’re ahead of us in this existential wackiness,” said by another mom who lost the way I lost, meaning our sons’ journeys have continued, meaning we can admit we don’t understand it, meaning my pain is partly derived from trying to align Lorenzo’s journey with my own… with footsteps on our earth, in our time, inscribed by the meaning I know through love and accomplishment and touch and compassion. Who am I to believe there is only this meaning, only this way to travel? 

• I’ve also been given images to hold onto. I may one day put all this into a box, a good friend said, but it will always be a box without a lid, perhaps more contained as time passes, as this becomes lighter, but never truly better. It will all be there for me to look at and carry and remember by, moment by moment. Or, as my husband said, this is like wearing a heavy jacket… while walking up stairs… and carrying an over-flowing box. We don’t ever take these jackets off now, Ryan and I, and even our jackets are different. Still, they are on for good, but sometimes we may feel lighter as we walk with them and sometimes, heaven help us, we may, for a portion of time, forget they’re there.

• There are many, many more helpful words that have been found by dearest friends and family and even the new friend I now have a bond with because our lives share a symmetry you would never want. She’s right, there is no boredom in this. For me, the waiting is the thing. 

Here’s where I still need some help:
• I have no sense of time anymore. It passes very slowly and without urgency until suddenly it is all urgent and I’m in a world where I never ovulate again or, if I do, I never get pregnant again or, if I do, there are more fatal complications. Ryan is better at believing in a future where our healthy children are running around and we can’t imagine a time when they weren’t. I believe in it, too—I have to—I just believe it more when he says it. 
• Metaphors aside, you can’t know how you will wear the grief, and sometimes I stick my neck out of it for a moment and look down on myself—un-showered, pajama-ed, though I’ve already walked the dog three times in one of those flannel pants-running-shoes-big-ski-jacket kind of looks I might have been horrified by as a carefree teenager. I think everyone can see this, but of course they can’t. They can’t know the real jacket I’m wearing, just as I can’t see theirs. To them, I’m just that girl with the sexy three-inch gap between the top of her shoes and the bottom of her pants, walking her incredibly cute puppy around the block again.
• I might need a glass (or two) of wine and I might need it (them) nightly. I am not beyond control with this, I know it will pass, and I talk about it with Ryan. I don’t hide it from him and I don’t hide it from you because I came back here to be honest. There is no point in turning to the side so others only see what you want them to see. That takes too much energy for you and doesn’t really do anyone any favors. I say this at 8:48 in the morning, far away from the influence of or desire for a glass of wine.
• I just made another appointment with the grief counselor and ordered four books on our kind of loss and our kind of decision. Now, Amazon can surmise just as much as you can. I’ll get auto-generated emails with recommended reading based on this order, or maybe I won’t because I believe these are the only four books that exist on the matter. Ours is an especially isolating, stigmatized, politically violent segment of grief. Still, I believe we did the right thing for our child, and that should be isolating, I suppose, even if many doctors also told us we did what they would do, that we were still good parents. But no one else had our child. No one else held him for an hour in a private room in the maternity ward of the very same hospital I was delivered in 32 years and four months apart from my son. 1980, 2012. February, June. Girl, Boy. That reality both connects me to and disconnects me from my own mother in the chain. Maybe it connects me to and disconnects me from you.
It made it so upon reading the noun, sere, I can now see myself in an entirely different part of the process. Sere (pronounced seer) means: “An intermediate stage or a series of stages in the ecological succession of a community. Example: forest, forest destroyed by fire, grass, brush, young trees, mature trees” (Wordsmith, 6.19.12).
Right now, we are living in a forest destroyed by fire, but we are believing in grass, believing in the community that helps us.

In This Present, HOPE

For the five years leading up to May 28, I have been trying hard to focus on “the moment” as a path to happiness. I have a book of Buddhist sayings that my mom gave me and copies have spread to various friends and family members. My mom likes to think we all look at the same saying each morning so that no matter where we are in the world, we share that same moment. I like to think that, too. It’s not rocket science; I’m sure we’re all working on staying in that moment, so we aren’t plagued by the past or daunted by the unknowns of the future. So, like Ryan’s aunt told us, we can just be.

That said, I suppose I shouldn’t be a fair-weather friend to the present. Even now, in the grief, I know I need to reside here, right here, through the horrible reality of losing Lorenzo and the hopeful future—of watching our boy grow up—that has been canceled out. I know I have to travel from being pregnant (the past) to not being pregnant (the now) to one day being pregnant again (the future).
This not being pregnant is nothing like the 31 years of not being pregnant that preceded it. This not being pregnant is a literal absence, an all-consuming deduction, a passing on of what my husband and I created. It is a loss of Lorenzo, but also part of myself, part of Ryan’s self. Of what of us was in him. That is my now, that is my present.
My present is also HOPE. As I walk passed a park with Ruby and see the children generate the motion of the swings, their shrieks high in the air above us, I see HOPE. I see what can be. That is how I let the hope into the present, even if it trickles into thoughts of the future. Without Lorenzo. With another child. A second child. A “rainbow” child, I’ve now heard it called, meaning the child who will arrive next and heal us, who we won’t be able to imagine not having, who will lead us out of the past. But sometimes the future can be too intoxicating for the present to handle.
So I step back into the present, back into the moment.

In this moment, we have Ruby. We have her unconditional love and her silly ways and her gentle temperament. She teaches by example when it comes to living in the present.


In this moment, we have your love and support. If you are reading this, you support us. You take the time to understand more of our story, and I thank you.
In this moment, I have my own health and the health of my husband and the health of our moms.
In this moment, I add to a 14-page single-spaced document called “Lorenzo’s Heart.” It’s what I open to gather this experience as it filters back to me, sometimes scattering slowly and other times so suddenly that I have to go ahead and reside in the past for a little while in order to believe the present.
In this moment, I take a walk. Every three hours or so, I take Ruby outside and we explore the neighborhood. We meet other dogs and the children look up at their mothers as they walk by and point out the puppy. We do this starting from 6:30 am down until 10:30 or so at night. Then we repeat. The present can be very repetitive and that repetition can be helpful. 
In this moment, I make a meal. It no longer matters if it doesn’t come out right. Now that I’m not worried, it usually comes out just fine. Ryan comes home and we eat and we talk about the day and it’s okay that my today looked a lot like my yesterday. It’s manageable that way. 
In this moment, I haven’t gotten my period yet. I can’t imagine why I’d ever have told you all something like that except that now it hardly compares to how personal I’ve been with you, telling you we lost our son, telling you I delivered him, telling you his heart never beat on its own. I share this because the period is my ticket to the future. When it comes back, it will represent a first step toward being pregnant again. We’ll still have some time to wait as my system normalizes, then we’ll have the trying, then the risky first trimester to wait through, and on through the ultrasounds and testing that will bring ever more anxiety than before because we know the worst thing can happen to the most innocent among us. But I’m not worried about worrying. That’s parenthood. I look forward to it because it means there is someone to worry about, a rainbow baby boy or girl waiting for us just as we wait for him or her.
But, in this moment, there’s no period. There’s no first step. There are instead the many steps around and around the neighborhood with Ruby. There is the awareness that my interior is still beyond my control, as this experience has been teaching me. I know we need to be calm while we wait. That was the first thing my doctor said when I walked in last November with a calendar and a list of questions and said we were ready to become pregnant. She told me to relax, to give myself the full year—2012—for it to happen. 
Here we are in the middle of that full year, during which I’ve already been pregnant (the past), not pregnant (the present), and—this is where I have to stop for now because the future is a little dangerous for me to travel to too often, though people like to tell you about it… about the healing nature of time, about this making sense one day, about the whole landscape of our lives being more acceptable than the immediate picture. What they’re trying to tell you is that the future is easier than the present. Of course it is. That’s why it takes so much concentration—why it takes a whole blog post to all of you—to stay here.

What I Know Now

So, here I am in the grief. Last time, I mentioned I was changed. It was one of the first resulting conditions I could formulate in my mind, let alone articulate in conversation or on the page.

“I. Am. Changed.”

I want to be. I do not want to be the person I was before we lost Lorenzo. After all, what do you learn if you do not change? What’s the point if you do not change?

—

He was already changing me, of course, from the moment I checked the pregnancy test on somewhat of a whim, while Ryan was getting ready for work one late January morning and we both figured it couldn’t really be that easy to get pregnant. But there they were, the two blue lines, an equal-sided cross encased in a plastic circle. I ran into the next room in gleeful disbelief to tell Ryan what I had always wondered would feel like to say: “I’m pregnant.”

It felt wonderful and exhilarating and other-worldly, even though that other world was buried deep inside me. From that moment on, I started to change.

So that when I sat uncomfortably in a San Francisco bar because it was important to see a friend from out of town, I felt changed.

So that when I felt vulnerable, my first reaction was to protect my son. That parental instincts flare quickly when you know it’s no longer just about you.

So that when I walked down the street and caught my profile in a glass-walled Santiago office building and eyed our changing shape, I felt changed.

So that when I did anything — sat on the couch, boarded a plane, passed through a doorway — I was not alone. I always had company. His. I felt changed.

—

Now, that path we were walking together, he and I, has split. The metaphoric fork in the road. My feet had been moving beneath me, thinking we were traveling safely along, until suddenly the ground was no longer there, though my feet still pedaled through the long, awake night, desperate to keep us on course. But biology and chance and misfortune were lifting us up and setting us, both of us for a short time, on the other path, the one you don’t let yourself think too much about if you can help it.

Everyone hopes that as time passes, this is getting easier and days are getting better. That is our society’s forward motion: towards “better.” Well, as more time passes, it actually gets harder because my mind knows we are farther and farther away from that point of divergence when the scenery drastically, instantly shifted. That distance is difficult to accept because it means I am increasingly separated from the company we shared.

Sometimes, I even feel two-selved because I can visualize myself continuing on the gleeful path, my belly (you) growing larger, the nursery nearing completion, Ryan and I leaving the hospital with you in my arms instead of a memory box of you. Yes, I was wheeled out of the hospital holding a memory box with my son’s photos and footprints. Yes, I delivered him in the maternity ward where they hung a fallen leaf on our door so the staff who entered knew we wouldn’t be leaving with our baby. Yes, I say “delivered” because I did not give him birth. Yes, I heard the cries of other babies being born that night.

Yes, because it’s winter,
there are fallen leaves all around Santiago.

And those are only the moments I picture before imagining the could-have-been of Lorenzo’s life, of his very own path through our world, a world he didn’t have a heart designed for, as Ryan says. What would his voice have sounded like? What about the world would have fascinated him? Where would he have taken after Ryan? Where after me? Where would he have surprised us with his astonishingly unique personhood?

—

Now I’m on this path, though I still try to claw my way back to the other one when I’m waking up in the morning and accepting the day. But here I am, and I now know:

• You cannot bring ashes in your carry-on luggage, or so the generous, somewhat hesitant man who delivered our son to us in a small white box told us.

• Where the deep compassion I see in some of the most incredible people I’ve known must come from.

• That our son’s sick heart was encased in an otherwise perfect body. That you cannot necessarily see these things that catastrophically change people.

• That we feel old now, Ryan and I. He said this to me at dinner the other night, and I agree with him. I feel “aged,” a word I’ve hardly related to during my 32 years. I look at pictures of the two of us, pictures from not all that long ago, and we look young, happy, and innocent, untouched by this grief. Will we ever be able to look at ourselves again and not see this? I ask, because there are many aspects of what I now know that I don’t yet understand.

February, 2012

• Just how many metaphors involve the heart: speaking from the heart, going straight to the heart, getting to the heart of the matter, your heart being or not being in it, a broken heart, a melted heart, a warmed heart, a heart on fire, heart strings, from the bottom of our hearts, taking heart, having some heart… and now, Hypoplastic Left Heart Syndrome, which isn’t a metaphor at all.

• That “anxiety” can exist for an infant, and that the neonatologist would have tried to anticipate it to the best of her ability were she to treat our son. That he would have struggled from the moment he tried to take a breath. So much pain. So much solitary uncertainty. That his one right ventricle would have had to be turned into a left ventricle to pump blood throughout his body instead of just to his lungs, from then on sending 30 percent less oxygen to his brain. That he had no visible aorta, another risk factor. That he would have needed a minimum of three open-heart surgeries by the age of two. That is, if he continued to survive or be eligible for those surgeries. That they did not present a heart transplant as a viable option. That I found out later that babies who do receive heart transplants need another by the age of 35. That there was always the possibility, despite all this, of stroke, of blood clot, of sudden death. Surgery… sudden death. Chasing a ball… sudden death. Sleeping… sudden death.

• That staying away from alcohol and caffeine, taking prenatal vitamins, giving up sushi and soft cheese and salami, drinking orange juice, moving your chair away from smokers… that all of that does not guarantee the health of your baby.

• That there comes a time for a “new normal,” whatever the fuck that means. That before you step into its light, you first sink back into the pre-change old normal for a time. For me, that has meant going all the way back to warm college clothes (big sweatshirts and wide-leg jeans) and the music I loved first (mostly classic rock and even Dave Matthews Band) because nostalgia is comforting.

• That the stars can appear brighter, the birds more miraculous, the grass sharper on your nose because you are seeing them all through your own world-splitting hurt as well as your pup’s fresh eyes. That you were expecting to see them through the eyes of your child.

Ruby <3

• That the grief counselor was right: “Shock is protective.” Now that the shock is gone, this leads me to believe she will also be right about what happens when the active support recedes… when your friends and even your family go back to their lives.

• That my husband and I owe it to Lorenzo to take care of our hearts, our healthy hearts.

—

I still do not know many things. For instance, what do you really ever say when your baby has died? What are the words and where do they come from? Is this still coherent? Does it even matter?

Where were all the words coming from before May 28? Were they coherent? Did it even matter?