Found Hearts, Part I

I keep seeing hearts. I find a stone shaped like one on the sand. I step over a spray-painted pink one on the sidewalk. I notice them decorating benches. When we landed in Perú and were driving from the airport out to the coast, I saw a large, hollow, wooden one on the second-story balcony of a road-side home. It had to be at least five feet across. Someone must have shaped it and built it and set it there, and I happened to look out the window at just the right time in order to see it.

 

 

I focus on the hearts. First and foremost, they remind me of my son. Not that I need reminders—he is always with me. Not that his heart was whole—it was halved and incompatible with life. But the hearts—these outward symbols of both the emotional and the physical—also remind me of the love in this world and the impulse to represent it with a universal shape made up of two curves that start together and reach up and out and curve before folding back down into a point. That reminder of love is what I need. Especially when the anger bubbles and I want to scream and ask why my baby’s heart wasn’t whole and I shake my head wondering how things can go so wrong when you do everything so right.

 

 

I don’t scream or shake over the small things anymore. This tragedy has greatly handicapped that stress response. Where once I flared, now I might only sort of simmer or just stand numb in the water. But sometimes something small does happen—let’s say I lock myself out of the house—and I feel the ol’ stress response coming on. I don’t want to be that person. It may not make sense, but I am so changed by my son that I either don’t want to be the way I was before (i.e. easy to stress) or literally can’t be that way (i.e. youthful or readily given to bliss).

 

 

But time goes by, like everyone has been telling me it does. Your feet keep covering ground, even if it’s just around and around your neighborhood with your dog, and the next time you look up there are blossoms on the trees. An entire season has changed. The world has kept turning. Other babies have been made. So while I am not healed, as they say of time, and while this too has not passed, as they say of things, there is a quantifiable distance I cannot deny. It is no longer the month I held my son or even the season. Not so long from now, it will no longer be the year. As Gillian Welch so beautifully sings, “Time’s the revelator.”

 

 

Sometimes I wonder if I’m getting through the days simply because I’m getting used to them as they are. As much as I dislike that very thought, there it is. I am getting used to being the first-time mom who lost her child. I am getting used to embodying the grief. But the act of “getting used to” does not preclude discomfort and anxiety and feeling at a loss. What will I say when, God willing, I have another baby one day and someone asks if he or she is my first? If I say NO, they will ask about my surely older, surely living child and I will have to explain. If I say YES—if I lie to make this other imaginary person more comfortable—have I denied my son?

 

 

This person isn’t so imaginary. I’ve already been asked three times if I have any children. For so many, it’s such an innocuous comment, as is “Are you pregnant?” as is “Do you want kids?” as is “Oh, once you have kids, you’ll see…” as is “Do you want a boy or a girl?” These are little landmines now. While I don’t always know which way to go, I know enough now not to ask such questions of other people now. It’s not just the people you meet face to face either. Recently, a credit card customer service rep declared upon my telling her I lived in Santiago: “Oh! I have a daughter! Moving there! With a baby! Do you have any children?! “No,” I said. “I don’t.” It was and wasn’t the truth, but she wasn’t a person with whom I needed to get closer to the truth. Still, it didn’t feel right.

 

 

I owe my son his rightful place both in my heart and when I speak. He has all of me that way, even my eyes as I look upon this world and see so many hearts scattered about it.

 

One Billion Minus One

I recently heard that Facebook can boast one billion active users. Well, I am no longer one of them. I deactivated my account over three months ago.

Perhaps like many of you, I had used the site since 2007. I loved it for sharing photos, tracking friends who lived all over the country and beyond, and sharing life in Santiago, especially since Ryan doesn’t Facebook. But when I became pregnant with Lorenzo, I hesitated to post about it for a couple of reasons.

One, I wasn’t sure how much of my child’s life I wanted to put online. Let me emphasize that I in no way judge others and in fact relish all those baby pics I get to see because social media makes it so easy. I’ve easily posted a hundred photos of our pup Ruby on Instagram; I fully get the impulse to share cuteness with the world. Still, it felt like a parenting decision, and I wanted to take a little time to think about it if my online profile was going to have a new member. 
Party of One.
Two, what if something went horribly wrong? How do you possibly announce online to your “hundreds” of friends and then un-announce? So I waited until the second trimester was more than well underway and I felt a real sense of confidence because every prenatal exam had thus far shown us a thriving baby boy. This waiting confused some folks, and it got to the point where it was harder to manage others’ postings about my pregnancy than to just go ahead and do so myself. It’s a strange world we live in that subjects such personal news to so many so quickly.
Three weeks after I announced, everything did go horribly wrong and I had to think about how I would possibly un-announce. I realized I couldn’t. How could I let a status update sum up this tragedy? How could I deal with the onslaught of commentary? (Privacy settings and notifications often just re-file that onslaught elsewhere.) How could I participate and “like” anything in this world ever again? I hated the fact that I was even worried about it, but shock makes you think about curious things. I once fell down a flight of stairs and the first thing I said to the person who ran over to help was that I had his same phone. Our mind goes to places ahead of us, and sometimes those places don’t even make sense when we catch up. 
I fell down the stairs in 2006, before status updates were such a prevalent part of life. These days, it seems when something good or bad happens, a lot of us take to sharing with the world the easiest way possible—by heading online and, as the one-billion-strong might suggest, directly to Facebook. Some people get a lot of support from such a visible platform when needed. It can be a form of social media as well as meaningful social change. I imagine, like it did on Twitter, it can rapidly engage disparate views when a certain vice presidential debate is on fire. Personally, I just couldn’t share, not there, not about this. For awhile, I wasn’t sure I’d be able to write about it at all, even given all the space and characters in the world. But within a month, I did, posting here on this blog the beginning of the story. And I haven’t stopped since.
So, why can I blog and be on Instagram and Twitter, you might be wondering? Well, there is infinite space on a blog. It’s home turf. It’s one conversation more or less in my control. I didn’t really start using Instagram until after, and life these days is very much about the before and the after. I’m still on Twitter because it isn’t personal in the way Facebook is. No photos of my pregnant person live there. There are mostly articles to read and share, and that has felt manageable. But I can’t go back to Facebook. If I ever do, I won’t delete the pregnancy photos and the joyful comments from friends because this experience can’t and shouldn’t be deleted. My son existed and I will never deny that existence. The point is that I don’t want to go back. I am not the person whose life was documented there for the preceding five years. She is gone, too, even if I am still here. 
So, I stepped away from the rest of the billion and felt almost instantly better for it. As I person, I think I’m a bit better for it, too, because if I’m honest I’d gotten in the habit of checking a little too often. I was a little too aware of it. Being so far away, I relied on it a little too much to feel closer. Maybe some of you know what I mean. Now, if someone wants to know how I’m doing or if I want to wish someone a happy birthday, it takes a little more effort than a quick profile post. It means a personal email or a Skype date. If someone wants to know about our journey, but isn’t comfortable talking to me, I know there is this blog to follow along with, which helps both of us. 
I hope no one takes any of this personally. If you love Facebook, I get it. Please go right on loving it. I’m just trying to show how isolating it can be even with one billion others there with you. Sometimes, I suppose you have to deactivate in order to really re-connect.

Bringing Up Puppy

We got Ruby, our seven-month old pup, fixed last week. To say goodbye to her at the vet and know she’d be having major surgery reminded me again just how little control we have. Thankfully, she came through like a trooper and aside from her sad (though somehow adorable) little cone and some itchy stitches, she’s doing just fine.

Wishes are pushing up through the grass all over Santiago this spring.

We did have one rough night where the only thing that seemed to calm her down was sleeping with me on the couch. We don’t usually let her up on the furniture, but I realized there was little I wouldn’t do to take away her pain and discomfort. I thought of my mom who was always there when I was sick, telling me to give her the pain so I could get better. At the time, I didn’t know what she meant, but thanks to a child’s imagination and willing belief, I didn’t question either. I just closed my eyes and thought about where the pain lived in my body, whether it was a stomach’s ache or a leg’s growing pains, and pictured it sort of evaporating into little bubbles that could float over to her. I never thought she would “catch” my pain herself; I just thought moms were better equipped to handle and dispose of those pain bubbles.

As Ruby’s mom, a couple of things are not lost on me this week:

Sleepy Cone Girl.

First, I’m not nursing my own child through his pain and discomfort. I am not preparing to hand him to a surgeon for his first, violent open-heart surgery. That is if he would have made it that far. I am not by his side as he recovers from that first surgery, if he would have survived it. That is not the path, though it’s also a parallel one now. I no longer just imagine the healthy boy reaching milestones like smiles and steps and silliness. That healthy boy was never going to be. Now, I imagine the boy with the sick heart. Though, in order to be truthful to the reality of HLHS, I have to also imagine losing that boy at any step along the way… soon after birth, soon after the first surgery or the second or the third, or suddenly out of the blue without warning. Though what are long hospital stays, infections, blood clots, strokes, brain and nervous system damage, and additional surgeries to handle the secondary complications if they are not warnings?

Three Kings of sorts, holding court outside the largest mall
in the city–and all of South America.

Second, Ruby will never be a mother. It’s not nearly as common to spay or neuter your pet in Chile as it is back in the U.S. The dozen or so savvy, gnarled street dogs I see on any given day are evidence of that. Had we not rescued Ruby, she would likely be a street dog herself by now, as her dad was, because the family we adopted her from wouldn’t have been able to keep eight dogs in their yard. While we saved her from that, in some way we sacrificed her motherhood in order to do so.

She’s still just a pup herself. It wouldn’t be advised for her to conceive until she’d gone through a few heats anyway, and Ryan and I are not in the dog-breeding business! But as I sit here, wishing and trying to be pregnant myself, I can’t help but wonder if we’ve deprived her of something. Do dogs mourn the loss of their ability to reproduce as we humans might? Will there come a day when she feels something is missing from her life? Will she have to do some soul-searching to get through it? Rationally, I know the answers to these questions. I know she’ll continue to have a good life here with us, complete with tennis ball chases and long walks where we stop and say hello to the neighborhood dogs, and lots and lots and lots of love.

Sitting pretty.

I want to mother and I know the fact that we have Ruby came out of that maternal instinct going from being so very close to fulfillment to being so suddenly and tragically deprived. I was left with a hole so large it felt more expansive than my very person’s ability to contain it. I was now an occupant of the hole, and I was going to have to start somewhere new and frightening in order to fill back up. I’m nowhere near full, but getting Ruby 18 days after we lost Lorenzo has helped. As it turns out, we also got her on the 20th, three months to the day before Lorenzo was due to be born.

There are several days of the month that now mark an anniversary of some sort in relation to this experience of grieving. On the 28th, we got the bad news. On the 2nd, Lorenzo came into the world as he did. On the 20th, he was due to be born and, going forward, be maybe a month or a year old. I have to meet these days from here on out, though they don’t always undo me. A random 5th or 13th or 22nd can undo me just as easily. It’s not about the number; it’s about this hole that will only ever be so full now. Fullness has to mean something altogether different because I am not the person I was before. My husband is not the person he was before. Because Lorenzo is not his person. And he is not replaceable.

Getting back to her playful self with Birdie,
part of a little care package from my mom.

So, I take care of Ruby Girl. I give her the love I have to give and make her life as good as I can. I wonder if she has any idea about the goodness she brings to our lives. We did the responsible thing and got her fixed, but there are so many new feelings to bring to bear on even that act. There is a consciousness of giving life to another, at least biologically. Well, I’ll be if she hasn’t given life to me and I haven’t given life to her. So, there must be so many ways to inhabit motherhood. There must be.

 

Letting Go in Máncora

Some time has passed since I last posted, and I’m still wrapping my mind around what’s transpired in the meantime. The events aren’t necessarily intended for reasoning or standard expectations. Instead, I’m seeing just how random everything can be (or at least feel) and that so much depends on how we react and the lessons we learn.

The Pacific Ocean…
seen now in California, Hawaii, Australia, Chile, and Perú

As I mentioned we would, Ryan and I traveled to Perú to honor Lorenzo’s due date, September 20. We chose Máncora, a coastal town in the north that sits on the Pan-American Highway and has warmer Pacific waters than we’re familiar with in either California or Chile. We wanted to be by the healing ocean in order to mark this solemn day—that was our first and really only priority. We did not want to be home in Santiago, amid the festivals and flags and general fan fair of another dieciocho. All the better that Ryan could get in some much-needed surfing and I could walk the beach and center with some yoga. We could get back to just be-ing.

My husband, the insta-celeb.

I’m not going to name the hotel. It’s not important at this point and I don’t want the culminating event there to overshadow the trip. I want to remember the four days where Ryan and I got to be together uninterrupted and undistracted, the daily yoga sessions that asked me to open my heart, the incredible food, the sunsets practically within reach of our patio, the way the wind picked up in the afternoon and sent ripples across the surface of the pool, and the simple, private ceremony we had to honor Lorenzo on the morning of the 20th on the beach, a few hours before those winds picked up. I remember that ceremony, especially, and the peace we felt and my legs submerged in the waves soon thereafter.

No caption needed.

I almost don’t want to tell you what happened because it might spoil an image you have in your mind now, just as it threatened to spoil so many of ours. But I tell you so we might walk along together in this confusing universe.

Colors. The first solo pic I’ve allowed to be taken in four months.

On the night of the due date, after we’d met the day with such anticipation and managed to find a real sense of peace, our locked hotel room was robbed. We didn’t notice at first; nothing was in disarray. We came back from an early dinner in town, I took off the heart-necklace Ryan gave me for my birthday two years ago and which I’ve been wearing with new meaning the past few months, and went to check the bedside table for the time. Only, my watch was gone. “So are our backpacks,” Ryan said, and sure enough they were no longer propped up on the couch. If our backpacks were gone, that meant our laptops, ipods, cell phones, Kindle, and two sets of house keys were also gone. In addition to the watch, they also rooted around for my camera, Ryan’s sunglasses, and even his SF Giants baseball cap. My gut finished its twist when I realized my hand-written notes about Lorenzo and this trip were also gone, as I’d put them in the front pocket of the backpack earlier that day so they wouldn’t be at risk in my beach bag, as we were warned theft was most likely to occur down on the beach.

Peruvian ceviche. It doesn’t get better than this.

Thankfully, we were safe, our passports were well hidden, and our wallets were on us. But there it was—we’d been robbed—as we told the front desk, as we told the other guests who stood outside their beachfront cabañas gawking at the scene and surely grateful it hadn’t happened to them, as we told the Peruvian police in the final hour of the due date. Whoever it was had the key and took the time to lock back up—an inside job—which adds a certain rancidness to the violation. “Trust no one,” as my husband sometimes says, both in and not in jest, though we both do trust others. I know there is much unspoken here about our privilege, the poverty in Máncora, and that whoever did have the key is likely far worse off than Ryan and I are in many ways. For those reasons, I don’t feel like a victim; I just see clearly how barbed wire, 24-hour security guards on patrol, and lock and key don’t actually protect you.

Mototaxis like this one are the main method of transportation.

The hotel did what they could, but needless to say, our things were not recovered. Thanks to my friend Amanda, who jumped through hoops, we had house keys waiting for us when we got back at midnight two days later. We’ve started to replace these things that we lost, which are thankfully mostly all replaceable. The headache of protecting all the information on my laptop has been the main frustration and a hard lesson learned. I will never again travel with such a valuable workstation, though nearly every other guest at the hotel had one of their own with them at breakfast or by the pool. We seem so used to this technology being with us at all times, even when we’re far away from home.

Of course, the street art caught my eye.

Many of you dear friends are so wise and have offered truly helpful insights. Those insights have helped me arrive at the over-arching lesson: I may not understand how the universe works—taking things away from us on a day that reminds us all too vividly of the depth of our real loss—but I have to let go… of these material possessions as well as the heavy guilt I’ve been carrying. I don’t know if I’ll succeed every day at this, as the past four months have continued to be that wavy, circular line my friend Suzy talked about. But I have to try to carry less of all of it.

It was right there at our fingertips.

Which brings me back here, to where I am right now, with Ruby asleep near my feet and my and my husband’s personhood safe—all that really matters. I can’t explain it; I do feel lighter. Not better, but lighter. Whether it’s because I physically have less to carry or because we’ve honored a due date that has now passed, I can’t quite say. It just seems no matter how we are forced to part with the material, our liberation from it can feel as freeing as it can disheartening sometimes. Although, any good Buddhist will tell you (as my friend Elsa did), “all that is material is immaterial.” So, what do you do when it’s the immaterial that has it’s hold on you? In my case, you travel to Perú, set it all down in order to find peace by the ocean, leave it there, and come back home again.

 

The Other 959 HLHS Babies

I’ve been telling you as much as I can about Lorenzo. For carrying him six months and holding him one hour, there is only so much to tell, but even that amount can feel infinite. Today, I also want to tell you about other babies with HLHS. Other babies brought into this world and fighting for their lives. According to the CDC, each year around 960 babies are born with HLHS in the U.S. alone, and any sort of definitive reason why is unknown.

This post is in memory of Liam, with prayers for Hope, and to raise awareness for all the babies facing a congenital heart defect. The fact that I stumbled upon them shows what phenomenal communities have gathered around these families and just how much heart their stories inspire.

Sculpture at Parque Bicentenario here in Santiago.
It reminds me that there are others calling the same call
and synchronized on the journey.

I’ve been told I shouldn’t look for these other stories about other babies. I’m too emotional. The high, narrow foot-bridge I walk each day is too wobbly to sustain the inevitable comparisons. But I don’t know one other person with this diagnosis in their lives, so I look elsewhere. I try to find the other 959 because the American Heart Association alone cannot tell me what I need to know many days: What was our son truly up against? What would his battle have looked like? With HLHS, there are statistics, but each case depends on each heart and the severity of the condition. You simply cannot know how your baby will react to treatment or what complications may arise. You can know, however, that there will be complications.

When I find babies surviving and even thriving, I feel at once relieved for their prognosis and knocked down to the floor, wanting to ask if that would have been Lorenzo surviving and even thriving. But I am so sorry to say that it’s much more often that I find a story where a baby may be surviving, but is far from thriving. That is the reality of HLHS and what is required to help these babies live to fight another day. These babies are and always will be my heroes, as are their devoted parents, as is every professional caretaker who discovers why fluid has built up or who inserts an IV with as little pain as possible or who simply makes another night in the hospital more comfortable.

 

I know from my searching that some of these babies are big kids now, practicing karate and heading off to kindergarten. I know that is the focused hope for every HLHS parent, even though the risk factors are still there for the big kids, too. Some of these babies didn’t survive the riskiest first open-heart surgery (The Norwood Procedure, usually done at around one week old). Others did and recovered in the hospital for a couple of months and even went home for a time before returning for the second surgery (the Bidirectional Glenn Procedure, the first of a two-part palliative operation). Some never went home between their first and second surgeries. Some never went home after receiving a heart transplant. Some have had to move around the country with their families in order to receive the best care or the particular kind of procedure their compromised body has come to require.

Even a new heart is not a guarantee for a life with few guarantees from the start. Heavy-duty anti-rejection medications must be taken, infections must be watched for, and even a new heart will only last so long. Without a transplant, a few of the complications include: blood clots (to the extent that central lines, which are requisites for the many open-heart surgeries these babies need, can no longer be inserted), pulmonary embolism or stroke as a result of the clotting, infection or sepsis, developmental delays due to brain and nervous system function, fluid build-up in the abdomen, lungs, and elsewhere (requiring drainage, chest tubes, and diuretics), difficulty feeding (requiring a feeding tube), difficulty breathing (requiring intubation, oxygen ventilation, or even a tracheotomy), and sudden death (which is always listed last in these long lists of complications and always socks me in the gut no matter how many times I read it). The fixes seem to lead to complications of their own: inadequate blood flow to organs and tissues during surgery, damaged vocal chords due to the intubation, fistulas due to the tracheotomy, bruising from all the poking and prodding, side effects from the medication needed to treat all of this, not to mention the general pain and discomfort these innocent little bodies endure.

 

I’m sure these families would say that none of this compares to the chance to save their son or daughter’s life. Every year, 960 families have to determine and follow what their compassion, beliefs, and instinct to protect compel of them, and that search does not yield the same path for each of us. I don’t know these parents and their babies, but I pray for them and I am grateful they are sharing their stories, which prove we are not alone, no matter how isolated our grief or circumstance may make us feel. I check in (daily in some cases) to see how these babies are progressing or if there has been another set back, and to understand how their incredible parents are managing, often with older children to look after as well. I linked to them so you might also support their stories and have a clearer idea of what our son would have been up against, what our lives might have looked like had we elected to take another path, and to where the deep cracks in our hearts would have continued to extend.

As I said last time, I have a kind of peace in my own heart knowing Ryan and I did what we believed our only son and his only heart needed us to do. I have moments of solace amidst the anguish. I still HOPE. While that may all be true at certain points each day, even the right choice, no matter what that ends up being for each family, can also feel very wrong. Similarly, I wouldn’t have been able to watch my son suffer such relentless complications and not feel that something was still very wrong, even if the decision to do so felt right. That feeling of the right in the wrong and the wrong in the right is another reality of HLHS and another reason why I find these stories. If anything, they provide an opportunity to refocus my prayers to those most in need. That, at least, always feels right.