Grief and pointlessness

Riley's jerseys

Gray clouds were smeared across the San Carlos sky like a thick layer of jam on that Saturday morning a few weeks back. It was early, but not too early as I set up my stadium chair at the top of the bleachers. With my cup of decaf, I cornered myself, away from other parents as much as possible because I was solo that morning. C’s dad was out of town; C’s stepmom was out of town; my husband was working. It was just me and I hate mornings when it’s just me at the Little League game. I just don’t know how to fit in. So I put myself in the corner and pretend I’m invisible. Then I scan the opposing team for blond boys with blue eyes and glasses that I can pretend my dead 11-year-old son is there. So that I can cheer for him silently. So that I can pretend that Riley is still playing baseball.

As the innings progressed, the clouds thickened and then colluded to make everyone and everything wet. It started as a few drops, but quickly progressed into a downpour. After a few minutes of rain, the umpires called a rain delay. Most people -- including the kids from both teams -- moved under the awning of the snack shack. I pulled my hood over my head, but stayed put. If I didn’t move, then no one would see me. I felt like a deer, frozen in place in my winter coat with the hood pulled over my head in an attempt to stay dry and invisible. One minute. Five minutes.

The other parents eventually joined the kids under the awning. Why hasn’t the game been called, I wondered. But I couldn’t ask anyone. I don’t know how to talk to the other parents. Do they know I have a son named Riley? I don’t know how to talk about the score or the at-bat or the home run. It’s easier to stay invisible. Ten minutes later and the rain continued.

For the sake of my son’s health, I mustered the courage to approach the team under the awning. I pulled him aside. “Do you want to go home?” I asked. “The game isn’t over yet,” he said. “But you are soaked and it’s cold. I’m worried you’re going to get sick. And it’s just baseball,” I said. “It’s okay. I want to stay.” I said okay and went back to my wet chair in the bleachers. A few minutes later, the drops became less frequent and the umpires said the game could resume as patches of blue punched through the jam layer.

The children went back to their sides of the field, their dugouts. The parents reclaimed their spots on the bleachers.I could hear their voices nearby. They talked about the rain delay. They talked about the score. They scolded their children for not catching the ball when they thought they should have caught the ball. They scolded the teen umpires for calling their child out when they believed that their child was safe. They cheered when a bat made big enough contact with a ball that allowed their child to run to second base without the need for scolding.

It’s all so pointless, I kept thinking. All the cheering and scolding and celebrating and complaining. But then again, what’s the point of anything? It’s all just a way to pass the time, to get through the weekend. An excuse to take pictures to hang on the wall. Something to do as a family. I don’t think it felt pointless when Riley played for all of those seven years. It was a place that he felt normal. A place where a uniform made him look like all of the other kids who had two ventricles and a spleen and their heart on the correct side of their chest pumping blood to its neighboring lungs and then to the far reaches of the body with ease. A place where I let myself believe that he was just like the other kids. And that him growing up was just a given instead of a fear sewn into my DNA that expanded and contracted with every breath.

Grief and scars

Rice love

The restaurant was dimly lit, but I could see the top of her scar that sat in the middle of her shirt’s neckline. My eyes went right to it; I wanted to stare. Not because her midline scar was a thing of curiosity, but because it is something I miss seeing on my boy. His scars were part of him in the same way his elbows were pointy and his eyes were blue and his lips were a darker shade red than others because of the low oxygen saturation in his blood. But I didn’t stare. I just wondered about her heart surgery as I ordered the tofu curry. Then I blinked back tears as she walked toward the kitchen.

Grief and Anger

When my husband got into bed last night, he ended up talking to the back of my head. I couldn't even meet his gaze. Yes, I was tired, but I didn't even bother to try to look at him because I was angry. His love for me baffles me sometimes because I'm not nice a lot of the time. And when I am nice, I'm a mess of a person with the snot draining from my nose and pile of soggy tissues nearby. He might argue that it's only some of the time that I'm angry and some of the time I'm a mess. But inside, it's all of the time. The rest of the time, I'm doing a good job of faking it.

Don't bother asking me why I was angry at him because I wouldn't have a valid answer. Please note my "faking it" face in the above picture.

If we were fighting, maybe I could channel some of the anger into that fight. At least it seems logical to associate anger with fighting. Anger with someone, instead of anger at nothing. Angry at the universe for stealing my 11-year-old son, my 11-year-old son who should be 14-years-old now and just starting high school. Angry at the air; angry at the clouds. Angry at the friendly cashier who asked me how I'm doing, when asking me how I'm doing seems like such a rude and invasive question. But I'm not much of a fighter. And my husband is just the scapegoat. I have a twisted feeling that it might be easier if he just got angry back at me. We could take turns being jerks and eventually, after a scoop of silent treatment, a serving cold shoulder, and a helping of being-really-busy-doing-other-things, I would apologize for being unjustly angry at him. Then I'd let him administer a big bear hug. Then I'd slap on my "faking it" face for another unknown period of time.

Don't be tricked by the anger, our therapist says. Mad Suzanne is actually Sad Suzanne.

If I'm not mad at him, I'm mad at myself. It's actually simpler to get angry at myself because I don't even have to wait for my husband to get into bed for that. I can simply battle it out internally. I'm good at that. Angry at myself for growing my son with only half a heart, no matter how many times doctors have told me that it wasn't my fault. That I didn't do anything wrong. That his malformed heart was just a fluke. Blaming myself is easier than chalking it up as a fluke. The word fluke should be reserved for flat tires or bumping into someone you know at a coffee shop in San Francisco. Flukes shouldn't cause immeasurable suffering to babies and children and their parents who must watch their babies and children endure immeasurable suffering. Fluke seems like far too nice of a word to be associated with what happened to Riley. What happened to Riley makes no sense. And it will never make any sense. It is senseless.

And even though it's senseless, being angry at my husband or myself is far easier than forgiving myself. For even considering to acknowledge that I was powerless to save my son. Even if I was powerless to save him. Even if my job during his lifetime was to love him, not to save him.

Riley in Newport, Oregon for eclipse.

I think the only people I'm not angry at are my sons. I will never be angry at Riley. None of this was his fault. He was born into it and had to endure all of the bullshit that went along with his fluke of a congenital heart defect. He never got a choice. And his brother is the light that remains in what is left of my broken, blackened heart. He is oxygen. He is water. He is food and clothing and shelter. When I'm near him, I feel slightly less dead. Because I am partially dead. Part of me died with Riley. And part of me is still alive because of his brother. And when that boy, the boy that makes part of me still alive goes off to his dad's house, it's like the little step stool that I'm standing on gets kicked out from underneath me. I get even more wobbly and it feels like the little piece of my heart that hasn't turned black from grief turns gray, and it's harder to move and to concentrate, in the same way that the chameleon struggles in Eric Carle's book when it's cold and hungry.

There are periods of time when the dread in my heart is so heavy that it's hard to move. Sometimes the sadness is more prevalent and sometimes the anger is more prevalent. I don't really know what triggers what. I suspect the angry volume goes up when my son is with his dad. But there are other things, too. Fall is approaching, the school year just started, launching my son--who is three years, three months and two weeks younger than Riley--into 6th grade, the same grade Riley was in when he died. Oh, October how I dread thee and the series of anniversaries that are fast approaching....

Riley (and Pepper) in the sand.

You see, October 8, 2014 was Riley's last day of school, his last day of 6th grade. And now that his brother is in 6th grade, as soon as October 9 comes around, he will have been in school longer than Riley was during his lifetime. October 9 was also Riley's final heart surgery. Then there are all of the horrible anniversaries associated with the downward spiral that followed surgery that led to his death. Then the younger brother will continue surpassing Riley--he's already taller than Riley was. In a couple of months, he'll be older than him. And just like that, the younger brother will become the older brother. Everything is upside down. Motherhood is much harder than I thought it would be. I think I need some more trees to chop down. In the meantime, I'm grateful for my husband who continues to love me all of the time, even when I'm angry.

Grief and baby names

The wind and rain that pelted us with stinging force earlier this week couldn’t stop us from going to our grief group for parents who’ve lost children. It’s pretty much the only place where I feel normal. Or normal enough. 

Brothers

One of the women there talked about her infant who died and wondered if she had another baby if she could give her new baby the same name. Her daughter had been named in honor of another family member and she wanted to give that name an opportunity to have longevity with a healthy baby, if she were ever lucky enough to have another baby. A healthy baby.

Long ago before I had children, I spent a small amount of time researching my family tree. I found old documents from family members and from genealogy web sites. I remember looking at the large families with many births and usually some infant- and childhood deaths. A hundred years ago, it wasn’t uncommon. And having never been a parent, it didn’t really phase me at all. Births and deaths generations before me. All of it was just names and dates written in looping cursive on old documents. I remember noticing that some families had more than one child with the same name. It was confusing until I looked more closely at birth dates and death dates. It became clear that the families who had more than one child with the same name had more than one child with the same name because the first child with that name had died. And so that name was reused. If baby Edith died, then the next baby girl was also named Edith. At the time, having never had children, I didn’t understand the practice. I probably joked that those large families must have run out of names that they liked. An ignorant joke from an ignorant childless woman.

A few years later when I was the mother of three-year-old Riley, I approached the idea of reusing names from a different perspective. It was after his third heart surgery failed and an external heart and lung bypass machine was keeping him alive. I was six months pregnant with his brother. And as I sat at the end of Riley’s hospital bed, I rocked myself, trying to reassure myself that everything would be okay because I had a healthy version of him in my stomach. I imagined he’d be the same in every way, down to the way he said rhinoceros. Russell Norris.

Six Hens cover art, Issue 7

I wrote about that day in the latest issue of Six Hens.

So I could relate to this woman in my grief group, her desire to reuse her dead daughter’s name again if she had the opportunity. Of course she wanted to. Of course, I understand. No, it’s not strange. How beautiful to get to say that child’s name again and again and have it associate with life and not solely with grief and loss and pain.

I don’t know, but I wonder that if you reuse a name, over time the memory gets confused about which child you’re referring to and they blend. And in that blending, I wonder if the dead child gets to live. I doubt the grief subsides in any way and I doubt the pain of loss subsides, but I wonder if perhaps it’s easier to pretend that the living child is both children.

Grief and Landscapes

Mindy Stricke's Grief Landscapes

I am honored to share Riley via Mindy Stricke's ‪‎Grief Landscapes‬ project. Each week, she posts a new story and image from her evolving art project about grief and bereavement. Riley's story within her project is entitled Green Tabasco Sauce.

It all started with a questionnaire about Riley and about how I was grieving immediately after his death. There were questions about him and about physical things that make me think of him. I wrote about his beloved stuffed penguins--Freddie and Freddie Jr.--as well as his love of baseball and of the color green and garlic and Tabasco. From there, she photographed an object in extreme close-up. In this case, it was green Tabasco. The finished product, according to her project's web site is meant to evoke "the memory of the person who died, transforming it into an abstract landscape inspired by the participant’s grief story."

A few weeks before Riley was featured on her website, Mindy emailed the image she created to me. She told me that she had played with lot of different angles to photograph the Tabasco bottle and also tried working with the liquid itself. “The process ended up being a mixture of trying to find the most interesting image while channeling the tone of what you wrote. I was going for some of the gray scale you described, and I liked the serendipity of the pinprick of light in the middle of the image, which is Riley to me,” she wrote to me.

I made the mistake of downloading the image on my phone while I was standing outside the bank causing me to burst into tears. I so love the idea of Riley being that center force of light on some kind of buoyant green sphere. In addition to capturing the landscape that I described in the questionnaire, the image also reminds me of a breast which is also fitting. 

When Riley was a baby, all I wanted to do was keep him alive with my body, as if my body alone could save him from the physical defects he was born with. And when he wasn't allowed breast milk for 12 weeks when he was 15 months old because it was too rich for his damaged lymphatic system (injured during his second heart surgery), I was determined to continue using the breast pump so that I could nurse him again when the doctors said his lymph system had healed. Breastfeeding was the thing I latched onto, the thing that I wanted control over. It seemed we had control over very little and I wanted to decide with Riley when to wean him--not the hospital or the doctors or the situation.

Thank you, Mindy Stricke, for allowing me (and Riley) to be a part of your beautiful project honoring grief. 

All of the people and stories in the series have resonated with me in some way. A sentence or a image or a feeling... They are beautiful and powerful and offer a glimpse into real grief. The more we are open to learning about grief and understanding grief, the more we can relate to each other as humans because loss and grief is as much a part of life as birth and love.

Now go see it and read it. It's worth the next five minutes of your day.

Grief and Puerto Vallarta

Showing Riley our view in Mexico

It was the day after Christmas in the Puerto Vallarta airport. My husband and I just spent a week in a sleepy beach town known for its gentle waves that entice surfing newbies onto waxed boards an hour north of there. As we sipped lattes while waiting for our boarding time, a familiar face passed as she headed for the restroom.

No, no, no, I panicked, feeling bemused about how there could be an acquaintance nearly 1,900 miles south and two time zones east of our Northern California home. We ran away from the holidays and the merriment of friends and acquaintances and their living children to a remote part of Mexico where I imagined hearing the words Feliz Navidad would feel less painful than hearing their English equivalent. But in that moment, in the busy terminal, there was the chance of no longer being anonymous. Anxiety replaced the serenity I found in the days spent perched above the sandy shoreline, and peppered with my enthusiastic, yet flawed Spanish.

Why would the sight of an acquaintance cause emotional distress? Because I have no idea what that person will say to me if we catch each other’s eye. While I can guess the topic--my dead 11-year-old son--I suppose it’s the approach, rather than the topic itself, that I most dread. Because I love talking about my son Riley.

Just like you enjoy bragging on your kids, I like bragging about him. I want to tell everyone about his quick plays at second base during his seven years of Little League, about the short stories and poetry he wrote, about his love of maps, of his siblings, his interest in penguins, hot sauce, and his desire to open a restaurant one day. We used to joke it would have been called, “Riley’s Salads and Fried Things” or “Riley’s Tofu and Salads.” His favorite dinner from the time he was just two years old was salad. I have photos of him, fork in hand, to prove it. Caprese sandwiches were his favorite. He loved that he had Italian heritage and enjoyed making his family bruschetta and croutons; he liked eating cloves of raw garlic. I can remember sending a little three-year-old boy into the backyard to pick handfuls of basil for batches of homemade pesto that would be spread on to thick slices of crusty bread.

But as a bereaved mother, I have found conversations with acquaintances to be painful, not because I am asked to speak about my son. But because the weight of the conversation is so often plunked down on my wounded heart with good, but flawed, intention. How are you? or even Sheryl Sandberg’s modified How are you today? sounds innocent enough. But in order to answer, I must access myself for this other person, in what ultimately is a passing moment in their daily routine. To me, it is so much more as I frantically scan myself in an attempt to sum up what it is like to live today without my son for a near-stranger. Ok, fine, or hanging in there are grossly inadequate and false. 

The moment’s complexity is exacerbated because interacting with humans with healthy, living children in general, is--quite frankly--a skill I have yet to master. You see, I'm still largely terrified of all of you. I'm also confused by all of you; your smiles, laughter, or your annoyance at traffic or the wrong latte at Starbucks. To be fair, I imagine your lives are far more complex than what I catch a glimpse of as I blast through my kid's school with my head down. We share the same roads and schools and grocery stores and oxygen supply, yet it feels as if we exist in parallel worlds. Most of the time I want to be invisible; yet, having you ignore me is a different kind of trauma. You're dammed if you do; you're dammed if you don't. I don't make the rules; I'm just stuck in this miserable grief game of trying to figure out how to exist among the living and having no clue about how to do it. 

To avoid that potential airport interaction, I turned around, slunk down in my chair, and watched the three kids opposite me--particularly the boy who looked about the same size at Riley who wore a “Most Valuable Player” t-shirt--eat pizza and chips. And I hid under my hat. I’m sure she didn’t recognize me with my short hair in the first place, anyway. 

Grief and A Leap of Faith

Gorgeous art from Issue 3 of Six Hens

* Note to reader: This is the "Letter from the Editor" from my literary magazine Six Hens. Issue 3 launched today. Feeling enormously proud. Read, feel something, share... *

A nurse tapped on the door before turning the handle. “I thought you’d want these,” she said as she approached me. She offered two Polaroid pictures of my newborn. Curiosity or instinct elevated my hand to receive them. “He’s beautiful. Do you have a name?” I shook my head then parted my lips to thank her. My words were reflex rather than gratitude.

She switched to nurse mode, asking when I’d last urinated or if I’d passed any clots larger than my fist and whether I wanted to breastfeed. When I said yes to that last question, she said she’d arrange for a lactation nurse to explain the basics. I didn’t protest, although I couldn’t understand how I could learn to breastfeed without a baby. Then her cool fingertips pressed my doughy abdomen. After her exam, I felt her access me in a different way. “You need to name him,” she said softly but firmly. That wasn’t any of her business. It wasn’t part of her job. But she must have heard about his x-ray, the one that showed his heart on the opposite side of his chest. She must have seen paperwork declaring “probable heart defect.” She must have known it was serious. She must have known that naming a newborn—even one with scrambled up insides—was more important than the possibility of him dying nameless.

Chalky morning light muted pinks and blues on the walls of the small room in the recovery ward of that Northern California hospital. It was before rush hour on April 3, 2003. Blankets and pillows swallowed me, but I was cold for the first time in months. My eight-pound-two-ounce furnace was in the nursery somewhere else on the floor. My fingers gripped the edges of the Polaroid pictures, which were face down on my lap. I flipped them. They were almost identical, showing a round-headed baby, eyes closed, head turned left with a breathing tube disappearing into his mouth. One image showed his torso where the umbilical cord stump had been removed. His skin was orange-red from iodine, which could’ve been mistaken for blood. I had read that a newborn’s stump normally fell off several days after birth, revealing a bellybutton. Our son, who we had yet to name, needed his cut away to use as a place to insert an IV.

I thought back to the moments after he slipped from my warm body into the cool, room-temperature air. As a hushed urgency of doctors escalated to my right, I noticed the baby was silent. “Ken? Is he breathing?” I asked my husband. He was, Ken said with his arms crossed tightly over his chest, “but something is wrong.”

A few minutes later, a nurse asked if I wanted to hold him briefly before they took him to the nursery for more tests. “I don’t think so,” I said unconvinced. After twenty hours of labor, my body was relieved to be free of him.

“You have to hold him,” Ken said. I reluctantly agreed. With my baby wrapped like a burrito in a blue, green, and white hospital blanket, the nurse set him on my chest so that I could see the creature that had been rolling around in my tummy for months. He wasn’t the most beautiful thing I had ever seen. His skin looked ashen, his face was contorted, and he was stretching his neck; it looked liked he was in pain. It felt like everyone waited for me to ooh and aah over him. But I didn’t. I just looked at him, at his twisted expression. The nurse said they had to take him. I didn’t want him any longer anyway. I felt faulty because I was not instantly in love.

When my husband returned to the recovery room, he explained that a neonatal transport team was on their way to ferry our baby to UCSF more than fifty miles south. I gave him the pictures. “You can go see him,” Ken said as he studied the photos, “if you’re ready.” When I didn’t respond, he lowered himself into the plasticky armchair to my left and took my hand. He looked thin, and dark patches underlined his pale blue eyes. It had been nearly nine hours since an initial newborn assessment forked us into separateness; I refused to accept that things were going horribly wrong. Surely he was just exhausted from being born; I was exhausted from giving birth. A few minutes later the nurse returned and parked a wheelchair next to the bed. I hesitated. Did I want to see my baby? A good mother would want to. Surely I was a good mother. Like a sack of rice, I slouched as Ken rolled me along. In a hallway carved of fluorescent light, it felt like we moved forward and backward simultaneously.

When we arrived in the nursery, I don’t remember seeing any other babies or cribs. Instead, the small space was crowded by neonatal transport experts. They prepared a special plastic box—a high-tech mobile incubator that would be placed in their ambulance. Plexiglass and a wall of EMTs separated me from my son. Through uniformed bodies, I could see bits of baby. An hand here, a knee there; so tiny, barely human under the web of intervention. He was enclosed, packaged, foreign. I wish I’d kissed his moist skin, inhaled his mossy smell when I had had the chance. The team assured us that he was stable and would be in the best of hands on his fifty-six-mile ride to UCSF, one of the top pediatric cardiac centers in the country. And then they were gone.

Kneeling in front of me as if he were about to propose, Ken’s warm hands reached for mine and pulled them to his damp face. Holding my gaze for a moment before putting his head in my lap, there was nothing to say. My fingers pushed through his trim brown hair and convulsions began. Unfamiliar sounds built in my diaphragm and erupted from my mouth, penetrating an otherwise quiet corridor. Nurses walked around us. No one asked us to move. We were left to mourn that moment. His birth. The unknown.

Eventually Ken pushed himself from the speckled linoleum and assessed my droopy posture. He brushed matted hair from my eyes. In whispers, we decided he should drive to UCSF, the hospital on a hill in our old neighborhood near Golden Gate Park, instead of waiting three more hours until I was allowed to be discharged. With that, he wheeled me back to our tiny room and helped me into bed.

“We have to name him before I leave,” he said with arms folded. I looked at his body, his denim pants and T-shirt, his waning hairline. Only in a twisted world would I debate pros and cons of naming my baby.

I hugged myself, squeezing my arms, rubbing open palms along my sides and over my vacant, shrunken stomach. “Okay,” I said after a long silence, still unsure. “Where’s the paperwork?”

He grabbed the form from the end table and clicked the end of a pen. The lines were long and blank. Without knowing his diagnosis or prognosis, I thought of the nurse, her prodding, and assumed a named child would be harder to forget than an unnamed child. He picked up the Polaroid photos and put them next to me. I studied the baby’s face and hoped it would tell me what it should be called. The blankets vibrated as my muscles shook. The stack of thin layers over my limbs didn’t seem to make a difference. After sinking down further, my eyes closed.

“We both like Riley,” he said, doing his best to keep me engaged.

My eyelids rose and focused on him. He nibbled at his cuticles as he waited for my response.

“I still like Mackenzie for a middle name,” I whispered eventually. “It means son of Ken. Then everyone knows you’re his dad. No one ever wonders who the mom is.” With that, he pushed pen to paper and our son’s name appeared. I sunk lower, clutching a pillow. He kissed my forehead, gathered his things and left.

It was incomprehensible. Riley was gone. I imagined miles of highway separating us, when nine hours earlier we had been connected. His flesh inside mine, held safe with breath and heartbeat. Nothing felt safe anymore. Ken drove home for a shower and fresh clothing before braving that unfamiliar San Francisco hospital, where he would start learning about our imperfect son, a baby I grew so horribly wrong.

It was just me in that little room. I had labored. I had delivered. But I was alone.

I didn’t know it at the time, but naming Riley despite terrifying uncertainty was a leap of faith. It was me desperately wanting him to be okay, hoping it was all a misunderstanding, a mix-up. It was also the first of many moments that define this mother’s love during my son’s truncated, eleven-year lifetime. He would have turned twelve on April 2.

Check out more powerful writing in the third issue of Six Hens!

Suzanne Galante, Editor in Chief