Name: Suzanne Galante

Age: 42

Tell me about the person who died:

My 11-year-old son Riley died on October 20, 2014. He didn't recover from his sixth heart operation. His fifth surgery was seven years earlier, so we had almost seven years of nearly normal life. Or as normal as you can have when you're raising a son with half a heart. You see, my oldest son was born with a complex heart defect and a chest full of organs that landed as if they’d been jumbled in a bingo machine. His first surgery was when he was six days old. But more than his heart, I want to tell everyone about his quick plays at second base during his seven years of Little League, about the short stories and poems he wrote, about his love of maps and of his siblings, about his interest in penguins, and about his desire to open a restaurant one day. We used to joke it would be called “Riley’s Salads and Fried Things.” From the time he was just two years old he loved salad and caprese sandwiches. He loved his Italian heritage and enjoyed making his family bruschetta and croutons; he ate 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 onto thick slices of crusty bread.

There was a sweetness to our relationship, a closeness that is different from the closeness I have with my other son. It was a physical relationship with him, always sitting on my lap and holding my hand (even at his middle school), and offering up hugs in front of his friends, even when his friends were shy about hugging their moms in public. He was the best thing that ever happened to me. Getting to be his mom was the greatest gift.

What was your experience of grief like after your loss? How did it change over time?

In the beginning, it was not breathing, not getting out of bed, disbelief. The world was so confusing, like all the walls and streets and buildings that I saw and passed on a daily basis were nothing but a mirage. People were still grocery shopping and going to work and school and it made no sense. And I felt like I had no purpose because I had spent the previous eleven-and-a-half years protecting him. Without him, I lost my identity. I had no idea who I was without him.

I also remember feeling like a rat inside a wooden maze. It felt as though everyone was looking down at me from the maze walls, scrutinizing my every move. I felt they were thinking, "Why did she turn left? Didn’t she know she was supposed to turn right?" I felt as if they knew what I should be doing as I fumbled along in grief. I couldn't help but wonder if the process of grief was some kind of riddle that each of us has to decipher.

For all of Riley's life, through years of photos, I had long hair. Even when a hat covered my hairline or glasses outlined my eyes, my long strands followed me. The baby grew into the toddler, who became the Little Leaguer and viola player; the long hair was consistent. Through long hospitalizations, holidays, separation and divorce, it was there. Through new love and step-family and pets, it was there. As his heart slowed and squeezed for the last time, it was there. During an emotional tide about four months after Riley died, I retrieved the scissors from the kitchen knife block. Clasping a fistful of hair, I chopped through one side, then the other. Again and again, I cut and sawed and chopped until any visual sign of that happy woman in all the photographs was gone. Afterward, like a mound of severed limbs, a heap of hair laid on the countertop. I stared into my own eyes again. Without hair to hide behind, the dark rings from exhaustion and grief stood prominently above my cheekbones. While I didn’t recognize the short-haired stranger, she was scraggly, ugly, and looked how I felt on the inside.

And I am still lost, but in a different way. I am lost now because I cannot imagine a time when I will want to be at a party or at a place where anyone is celebrating anything. It feels impossible. I don't know how to interact with humans who have healthy, living children. I have shut down most of my friendships and spend most of my time alone. I'm largely terrified of everyone. I'm also confused by all of them: their smiles, laughter, or their annoyance at traffic or the wrong latte at Starbucks. To be fair, I imagine people's 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 people ignore me is a different kind of trauma. They're damned if they do, damned if they don't. I don't make the rules–I’m just stuck in this miserable game of trying to figure out how to exist among the living and having no clue about how to do it.

If you had to describe your grief as a literal landscape, what would it look like and feel like at different points since your loss?

Imagine petting your dog through rubber gloves. Imagine kissing through a sheet of plastic wrap. Imagine showering wrapped in a rain poncho. Imagine trying to smell freshly baked cookies with a nose clip. Imagine listening to your lover while wearing earplugs. Most of the day, I’m wrapped in this numbness. My world is a spectrum of gray—colors covered in soot. Then grief throws me down and for that period, I feel everything. All the numbness disappears while I’m overpowered by a current, a rawness, the force of every ounce of grief bound together like a bus that rushes toward me at 110 miles an hour. It flattens me, leaving me breathless and weak and feeling even more broken. When it passes, numbness returns for another moment or few hours or days.

Tell me about an object that reminds you of the person who died, and why?

His Tabasco sauce caddy was the best gift he ever received! We used to joke that he would end up taking it with him to college. Green Tabasco has always been his favorite, but he would dabble with original and garlic and Buffalo-style. At his 10th birthday, the party favor was little bottles of Tabasco. We think one of his medicines dulled his taste buds, which is why he liked strong flavors. He put hot sauce on everything–even graham crackers. Whenever my son or my two stepchildren draw pictures about Riley, they always contain a bottle of green Tabasco.

How did the people in your life support you in your grief? What was helpful? What was frustrating?

There was food, a long succession of meals to feed us. Children from Riley's school wrote #TeamRiley on their arms in solidarity with him while he was in the hospital. They wrote notes to Riley and our family on heart-shaped pieces of paper. They arrived at the memorial and after we were done with them there, I laminated them and hung them on my front door and front windows. One child made #TeamRiley wristbands and sold them to raise money for Camp Taylor, a free summer camp for kids with heart defects. Other children organized a bake sale for Camp Taylor and the Children's Heart Foundation, which funds research for congenital heart defects. Another classmate organized a 5k run which eventually included 200 people.

We have a video of Riley as a little kid singing Owl City’s “Fireflies." We played it at his memorial. After his death, the school played it on the loudspeaker on his birthday, and the orchestra chose to play it at the Christmas concert. On the first anniversary of his death, we had a handprint memorial. Our garage door was painted with hundreds of classmates' handprints. It was helpful because seeing all of those people come over and stand in a long line to wait to participate showed me that people have not forgotten him. I get notes from people every now and again telling me how they have thought of him recently. One example would be when a classmate stands up in her synagogue and says Riley's name when she's asked who she is mourning. Seeing how people are honoring and remembering him is healing. One of my biggest fears is that people will forget him.

What’s frustrating is communicating. 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. What would be better? "I'm thinking of you" or "It's good to see you out."

I have so desperately wanted to connect with other women who have lost school-aged children. Just as I wanted to go through the newborn phase with other women, I've wanted to explore grief with someone who was about the same place I was. I found some women who lost children a decade or more ago, and it felt like they just kept telling me it would get better. But that isn't what I needed to hear. Quite frankly, I don't want it to get better. Grieving so hard feels right and any changes in my grief are another loss. Now that I only cry a few times a day instead of 30 times a day, it's a loss. Being able to go to the grocery store on my own or cook dinner or do laundry, all of those achievements feel wrong. I want to reject anything to do with the regularity of life because it feels like figuring out how to live without my son, and I don't want to live without my son.

How did people who were grieving the same person respond to the death compared to you? What similarities and differences did you notice?

One night while my husband was at a meeting, I sat at the table with my three loud children. They were excited about the cheesy garlic bread I made. They wanted to grate mountains of cheese onto their spaghetti. They did not like the look of their apple and beet salad with walnuts. But they laughed. They hummed. Told jokes. They were just being themselves. I scowled at them. The things I used to enjoy about my kids are upsetting now. I get mad at them. I scowl. I don’t like fun.

Mealtime used to be a joyful event. A few months before Riley went into the hospital while my husband was out of town, we spent an entire meal only singing to each other. “Would you please pass the cheese?” was a melodic request followed by: “Yes. I will pass the cheese, pass the cheese, PASS the cheese.” Think Bohemian Rhapsody. It was the best. Laughter is now grounds for disgust. Despite the talks my kids and I have had about them feeling sad on the inside even though they look happy on the outside, it’s hard to accept. All that laughter feels like a betrayal of the truth.

My husband, Riley’s stepdad, held our household together when I fell apart. He had to compartmentalize in order for our house to survive. At the same time, I didn't understand how he could do it. On his birthday, my husband shuffled the kids off to bed and I plowed my face into pillows and refused to speak. I transformed from Present-Buying Wife into Bitch Wife, angry that Husband had a birthday in the first place. Angry that his family sent birthday cards. Angry that he called them and laughed and joked about who-knows-what. I could still picture him jumping around the kitchen like one of the kids repeating, “It’s my birthday. It’s my birthday.” In between each line, I hear: Riley died. Riley died. Riley died. I have crazy days when I feel like him going to work and being able to go see friends at the pub is a betrayal of Riley's death. No one will grieve Riley the way that I grieve Riley. But I made a pact early on that I didn't want to lose my husband as well as my son.

How did your private grieving relate to your public mourning?

I am not interested in holding myself back or denying my emotions. When I'm in public, I cry or shake uncontrollably. At the school’s holiday concert I sobbed for the entire show. When my younger son Carter had his glee concerts, I had to leave the room several times to catch my breath. I think much of my social anxiety is just not knowing who I might run into. When I spoke at the school project ceremony, I cried. When I handed out #TeamRiley bracelets to a bunch of 8 and 9 year olds, I cried. It's human. His death is fucking sad–how could I not cry?

Were there any personal or public rituals or structures that helped you in your grief?

We have a makeshift memorial that we visit on the trail we often hike. We take the kids and "go visit Riley." Sometimes, one of them will say, "I'm going to run ahead to talk to Riley." Seeing the kids thinking about Riley and feeling like we have a place that we can visit him feels right.

How did your loss and your grief change you?

I believe in things that I otherwise would not believe as an intellectual and rational human. I get "Letters from Riley" every so often. They are little notes that just appear in my head out of nowhere. You can call them whatever you want, but I believe he sends me little messages. The first was:

Dear Mom,
I've been thinking a lot about Tabasco.
Love, Riley

Another was:

Dear Mom,
Don't let me dying be an excuse to lie around in bed all day.
Love, Riley

Another:

Dear Mom,
I miss Carter.
Love, Riley

Another:

Dear Mom,
I don't miss macaroni and cheese.
Love, Riley

Riley went into surgery scared, but hopeful. He looked forward to running, flying on airplanes without oxygen, and going to the mountains–something he could not do because of his low oxygenation. I like believing that he died still feeling hopeful for those things, and I imagine him running and running and running. I feel grateful that he died while being soothed by his mother, father, and two bonus parents and not in an operating room. He is no longer in pain, no longer suffering, no longer struggling. For this I am also grateful. Afterward, I noticed a vertical beam of light pressed against the wall near the closed blinds at the end of his bed. In that moment, I believe that his essence was that beam of light. And as a result, I talk to strips of light on the walls, often out loud, as if I'm talking to Riley, and I can hear his replies in my head. Why wouldn't I talk to him? And since I cannot see his physical body, I talk to the light.

Suzanne Galante is the founder and editor in chief at Six Hens (http://www.sixhens.com), a literary magazine honoring life's defining moments. She holds an MFA in Writing from the University of San Francisco and a Journalism degree from Northeastern University. She has been writing as Mother in Chief since 2005 (http://www.motherinchief.com).

This post is part of Grief Landscapes, an evolving art project documenting the unique terrain of people’s grief. Participants share an experience with bereavement, and I then photograph an object that evokes the person who died, transforming it into an abstract landscape inspired by the story. I’m accepting submissions until June 15th, 2016. L earn more about the project, share widely, and submit your story.

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