The Same Hour Passes

It’s been a year since I held Lorenzo. The most important hour of my life. Technically, it’s been a year and two days. In my heart, a lifetime. My heart didn’t break that day—it pulverized. It was difficult to breathe and the moments when I woke up again and again to our new reality were nearly as breathtaking; their repetition left an ache in my body. As my support group is helping me to understand: This was a personal, physical, and spiritual experience. This was a significant event. We can use things like art and music to move the feelings up and out of our bodies, where, for mothers like me, the entire story happened.

 

Our trip to California kept us busy and moving right on through those reminiscent May days. Last week, back in Santiago, back in late autumn, the exact time frame a year ago where we were receiving Lorenzo’s diagnosis and coming to our decision, it was all I could do to move my body down the street with Ruby and keep up with other essentials. I came to a near stand-still, much like those first days afterward. There was very little “accomplishment,” next to none checking of boxes. Things could just be, even if that meant still and quiet. I miss California as a quiet place. We had tastes of it, of course (in our moms’ backyards, parked at Ocean Beach with La Playa burritos), but expat living can change where you come from as much as it changes where you end up.

 

In the stillness, I thought hard about what I was going to do to honor Lorenzo on June 2nd. I’ve come a long way since then, but I am back inside that hour in an instant and I wanted to pay significant respects to our significant son. It’s not even on my radar to let go of his ashes, so that wasn’t on the table. In Santiago, where it’s largely just us, I knew it would be private, if not confined to things like the mind, like conversation, like the sway of a candle’s wick.

 

Rituals are important for our coping, but my group leader has also helped me see that these rituals can be done at different times and they can be as simple as that candle. So, when the day came, I let them be. I wrote a letter to Lorenzo, not for him or about him, but to him. I was grateful to spend the day with Ryan, and we took Ruby to the dog park because making her happy truly does help. Thanks to so many of you, I posted the 1,000th heart link in the chain for Lorenzo. I also opened the memory box the incredible nurses at Stanford made for us and went through it gingerly, as I do from time to time. It’s too private to share visually, but I will tell you that he was given a heart-shaped pillow and a small gown covered in colorful hearts. Can you believe that?

 

Finally, I tried to stay in the present, respecting what Lorenzo is now, today, in our minds and hearts, as much as he was a year and two days ago in my arms. There are other days to think about the future and what might transpire between now and the next June 2nd. Thank you again to everyone who remembered Lorenzo and told me they were thinking about him. That carries him into the present too, and I am so grateful for that. Thank you for reading this past year, for listening, for dealing with my emotions as I deal with them. I hope I haven’t tried your patience or over-tested your endurance because this won’t be the only year without Lorenzo. The seasons—their degrees, their leaves, their scents on the air—may repeat, but time is always taking us farther from certain significant events and towards others. The same hour passes, but holds something altogether different.

 

Remembering Hope

It’s Memorial Day. I’m back in rainy Santiago after a quick trip to California for a lovely family wedding in San Francisco. In the very same venue, in fact, where Ryan and I were married two-and-a-half years ago, after getting engaged three Memorial Day weekends ago. Time since then has gone both quickly and nearly still.

Photos from a May day at Ocean Beach, CA
with good friend and avid heart-finder, Courtney.

 

Returning home in May meant I was home over the days my family, friends, and I celebrated Lorenzo, the days when he felt guaranteed to be there with us one day, the days when I stocked up at Target because the baby things imported to Santiago can be double the cost. And I wanted to be prepared. I was “safely” in my second trimester and I was ready to start nesting. Then, on May 28, we received the first, devastating hint of the diagnosis. “The heart does not look normal,” my doctor said. By May 31, we were back in California.

May in California is beautiful. Sunny, breezy, the fog typically at bay. But I could feel something else in the air this time. I could feel the temperature of a year ago and the searing shock of our changed lives and the total disbelief that we had to say goodbye to our baby.

 

 

Last Tuesday, May 21, while I was home, Baby Hope lost her battle with HLHS. She was only a year and a month and 17 days old. She weighed 12 pounds. She lived most of her life in the hospital, under the care of doctors and the constant love of her parents and big sister, who fought for her with such strength and faith. Her mom, Amy, shared Hope’s journey with the rest of us. She was brave enough to reach out to me last summer for most of you/winter for me, and acknowledge how difficult both of our journeys as mothers—both of our choices—are. I was brave enough to read her blog every day since then to see, maybe, how Lorenzo’s life would have gone had Ryan and I chosen that path. Hope’s stats were so similar to Lorenzo’s, I felt like Hope provided a window into what might have been.

 

 

I saw what infection and blood clots and major bleeds and compromised organ function and difficulty breathing and not processing food really look like. I saw how it felt to know that Hope was not in fact eligible for the third of the three open-heart surgeries the doctors tell you about when your baby is diagnosed with half a heart. Hope’s only option was a heart transplant, which never came. I realize you can’t compare in these situations. Like most comparisons we might make between our lives and others’, it doesn’t help. But I needed to see what life was like for Hope and her mom and the rest of her family. (Just because we made our decision nearly a year ago to the day doesn’t mean I don’t still try to understand. As Ryan puts it, he can accept if he can understand.)

 

 

Some days, seeing the pain and the tubes and the listlessness on such a small baby validated our choice. I could see clearly what we spared Lorenzo. On other days, when she smiled, the view wasn’t so clear. Would it have been better to be holding my baby even if he was so sick? If so, who would that have been better for? Can you use words like “better” when such tiny souls are fighting for life? I no longer think so. As my group support leader put it, we may embrace both feelings. I can wish the best for Hope, as I did over the past year, and feel a sense of relief for Lorenzo’s freedom from the same circumstance. This isn’t a situation where we reconcile or barter or decide once and for all who is right and who is not right. Those words don’t work when babies are born with half a heart.

 

 

When Hope turned one last month, her brave parents posted a stunning video of her first year of life. I sobbed. How could anyone looking at her not break and cry out for an answer? It also made me wonder if Lorenzo would have made it that far. Understanding, it turns out, does not always spare us from wonder.

Forty-seven days after Hope’s first birthday, her heart gave out. Her mom held her. It was the scene of love and panic and shock and grief I imagined for Ryan and myself over those days we were making our decision. I knew in my heart a day like that would come; it was just a matter of when.

 

 

I’ve shared all of this in case you, too, might need to know what the other path looks like. Because I no longer believe one is right and one is wrong, I have to believe each parent knows what should be done for each child. No matter how they got there, Hope and Lorenzo are now free of pain. As a result, Amy and I know a pain unlike any other. I have a feeling she wouldn’t change a thing about her decision, and today I’m feeling like I wouldn’t either. The one thing we would surely sacrifice our own lives to truly change—two chambers into four—couldn’t be.

 

 

Today, I remember Lorenzo and Hope and all the babies like them. I remember their parents. My heart aches for them and, while it may beat as it ever did, it is forever changed.

 

The Morning After Mother’s Day

The morning after Mother’s Day is harder than Mother’s Day itself was. That’s a surprise. Maybe that’s because Mother’s Day itself was a Sunday. That means Ryan was home and we took Ruby out for some tennis balls in the backyard and we ate all three of our meals together and we called our moms and heard their voices and reflected out loud about Lorenzo.

 

 

Last year on Mother’s Day, I was home in California, celebrating with my mom and Ryan’s mom as well as my aunt and uncle who were in town for one of my baby showers. Imagine! How different the world was! Ryan’s mom gave me a sweet book of poetry about motherhood. Right now, that book is in a shopping bag with other baby-related reading in a closet I open very rarely.

 

 

But I am a mother. How to square this with our culture’s typical interpretation and projected imagery of “motherhood”? I’m trying to write an entire book to square it, but yesterday I wasn’t concerned with that. I stayed offline. I got a haircut from a friend who makes me laugh. I finished Swimming with Maya by Eleanor Vincent, who lost her 19-year-old daughter after a freak fall from a horse. Last week, I finished, Holding Silvan by Monica Wesolowska about letting go of her beautiful infant son. Last month, I finished The Still Point of the Turning World by Emily Rapp about parenting her terminally-ill child. Last year, I read An Exact Replica of a Figment of My Imagination by Elizabeth McCracken about her stillborn baby. Are we mothers ever really in control?

 

 

Mostly, I thought about Lorenzo. I kept thinking over and over: I hope I was the mother Lorenzo needed me to be. I pray with all my heart and will that he senses that. It is all that matters at this point: that he somehow feels the love Ryan and I have for him. It’s the same love out of which we made our decision. The thoughts arrived with a clarity that hasn’t settled so close to me since those first days without him. Maybe that was my Mother’s Day gift.

 

 

Mother’s Day happens in autumn here. There are fallen leaves all over the ground… again. They tell me without my having to think that it’s almost been a year. On May 28, we received the diagnosis. On June 2, I saw my son’s beautiful face. Those days are right around the corner. Mother’s Day, always in May, was yesterday. It’s a vortex of time and loss and love.

 

 

I’ve joined a professional support group for moms like me, and it’s helping. We speak over the phone when it’s late in Santiago and I’m the only one in the house still awake. When I mentioned the impact of the leaves on the ground, the leader said that our memory—and its weather, smells, etc.—can put us in a completely different place with our loss. She also told us to prepare for these anniversaries, to ask ourselves what’s the best way to spend the day? Where? With whom? We’re supposed to have a Plan A and a Plan B in case we need to be flexible. We’re supposed to let others know we may need extra support.

 

 

So, here I am, letting you know. To those of you who remembered me yesterday and acknowledged Lorenzo and my form of motherhood, I can’t tell you how much that means. Frankly, on a morning like this one, it means I have soft spots to go back to and rest upon.

 

 

I want to extend the same courtesy. To everyone who is a mom in a way she didn’t expect, who wants to be a mom, who is struggling to become a mom, who has lost a mom, who needs a mom, who has accepted she won’t be a mom, I wish you strength and peace and solidarity this morning after Mother’s Day. On whichever day that’s harder than the one before, I hope I can provide a soft spot for you when you need a rest.

 

The Way to Machu Picchu

When you’re only one country away, getting to Machu Picchu can still take a few days—even if you don’t hike the Inca Trail. First, you board two planes. Then, you may spend two days in the lovely city of Cusco in order to adjust to the 12,000-foot altitude and where endless color can be found… in the bonnet of a wee lamb,

 

 

… in the glow of the age of the cathedrals in Plaza de Armas,

 

 

… on all the doors painted blue and often covered in hearts,

 

 

… in the twirl of the skirts on the dancers we happened upon one evening in the Plaza,

 

 

… in the textiles and fruits and bread and meat all piled high at Mercado San Pedro,

 

 

… and in the wraps the women use to carry their belongings as well as their babies, strapped snuggly to their backs.

 

 

On the day you’ve been waiting for, you awake in the dark and take a two-hour bus ride followed by a two-hour train ride. The countryside is enveloped in mist, or so it looks like as the sun peeks over the jagged mountain line and shimmers against the dew crystalized across the fields of short crops. You might think about how long it has been since you’ve really seen morning dew like that. But it isn’t mist at all wrapped around you as the bus bumps along through the early morning. Really, you are in the clouds. When are things ever what they seem?

 

 

Then, another short bus ride along narrow dirt switchbacks to the top and a view of history so expansive, you realize almost immediately that the many and widely circulated photos you’ve ever seen of this world wonder haven’t come close to containing its essence.

To the right.

 

Head on (above), from behind (lower left), and up close
(lower right). The original water supply/drainage system still works!
And to the left.

 

What you can’t sense in the photos are the breezes that wrap around your legs. Or the birds that hover and dance in midair before swooping down to the snaking riverbed far below both of you.

 

On the path to the Inca Bridge.

 

There is also the smell of the grass along the perfectly spaced and angled terraces, kept mowed by one of 16 llamas descended from the two that were initially introduced to the ruins some time ago.

 

 

There is the moment when the tour is over and you climb to the famous lookout point and rest on the grass nearby and try to take it all in so you can really remember what it feels like to be surrounded by an entire Incan village built over five hundred years ago, so isolated it was spared during the Spanish Conquest and fully protected until the last century. It makes you want to both be still and jump for joy.

 

 

And then it’s over for you and the couple thousand of tourists who visit on any given day. You descend the steep stone steps, get back on the buses and the train and crawl tired into your bed back at the hotel in Cusco before you wake up to fly back home. You have the feeling that you would love to come back, but wonder if you ever will.

 

Full moon over Cusco.

 

Praying for Boston

Boston College Graduation, May 2002

Since Monday, I’ve been glued to the news, just like many of you. I’ve checked in with loved ones in Cambridge and Jamaica Plain and the friends from my own college years in Chestnut Hill, a peaceful town at the end of the green line. My cousin was watching the race close to the finish line, cheering as friends went by. I’m so grateful that she got hungry. She and her fiance were in a nearby restaurant when they heard the bombs go off.

An entire city is now locked inside and under surveillance during an unprecedented manhunt. Schools are closed, including Boston College. Military humvees are on the streets of Watertown. The police searched nearby Newton, where I lived freshman year. I remember watching the Boston Marathon from a street corner there, as the runners came around the bend and prepared to tackle Heartbreak Hill, a shallow, yet steady half-mile incline that must feel like it goes on forever when you’re over 20 miles into a marathon.

That heartbreak has taken on a whole new meaning… A child taken at his most innocent, graduate students younger than I am, and now another victim in the wrong place at the wrong time. Parents just getting to know their worst pain. The last mile of this year’s marathon dedicated to Sandy Hook victims, and the knowledge that there are now families who have experienced back-to-back terror. The added defeat in Washington, where the Senate couldn’t even expand gun control this week.

I remember another time Newton was part of unfathomable atrocity. During my senior year, two hijackers spent the night in a hotel there before they woke up very early and went to Logan Airport. At that time, I was on campus and worried about loved ones in New York. I didn’t own a cell phone, so I used the pay phone in the dining hall to check in on another cousin who worked downtown. Now, we have the personal technology to help the authorities and to document the experience in real time. It changes the speed and the means of how we absorb the event, but there’s so much we still don’t understand about each other.

Where do we go from here as a world so catastrophically divided? Many countries are, tragically, much more conditioned to this kind of attack, so I ask on behalf of all of us. We all come into this world the same way; we’ll all take a last breath. How can we go so far astray in between? I know there are international relations and radical beliefs involved, misunderstandings on all sides and, as a result, unfortunate racial profiling. A 17-year-old kid, a runner, misidentified as a suspect by the over-eager media was scared to go outside before the entire city joined him in another version of that fear.

Acts of valor and kindess emerge during these tragedies. People rush in to help the victims. They surround danger. They act. Humanity responds to humanity. I will try to focus on that when the questions don’t have answers.