Grief and The Question

The question was already rumbling in my stomach when my thoughts rose into consciousness this morning. I rolled from one side of the bed to the other as the uneasy feeling lingered. My husband had already gone to a meeting. I inched to his side of the bed, rested my head on his warm pillow and waited. Waited for the right answer to appear.

The sun had yet to color the sky, but I could sense movement from the other room. The preschooler was awake, needing the bathroom. “I had a thought that turned into a dream,” she said, as I tucked her back into bed. “What was that?” I asked. “Me getting into the car to take dad to the airport with you.” I smiled at her as I pulled the blanket around her shoulders. “That’s a nice dream,” I said, "but dad isn’t going to the airport for a long time and so you need to go back to sleep." As soon as I got back into my room, she was sitting up, waiting for it to be time to get up for real.

Even as I showered, as I dressed, as I pressed my foot into the gas pedal, I was still wondering about the question. And the answer. You see, I was going to talk to a woman I went to graduate school with that night. She had read all about Riley’s hospitalizations and surgeries when I wrote about him more than a decade ago. I cannot even recall the last time I saw her, probably at graduation. Or shortly after at a party at her house in San Jose. I can’t remember if she was at his memorial. If she was, I certainly haven’t seen her since then.

But when we talk on the phone, I will say hello. She will say hello. Then she will say, “How are you?” And I have no idea how to answer that question, especially when asked by someone I haven’t talked with in so long. Someone who hasn’t witnessed the howling, the blood-shot eyes, the twitchy version of myself that exists when I leave my safe bubble at home, when I venture into the world. The half-eaten version of me, even though I look normal on the outside. Or normal enough. The mom of a 3-year-old.

This woman didn’t witness all the months when I didn’t leave my bed. And after that, when I didn’t shower or comb my hair and wore the same thing for six or seven days in a row because I didn’t know how to get dressed. The woman who cut off all of her hair to look ugly, hoping to match how I felt on the inside. When we talk, this woman will hear the fast-forwarded version of me. The one that can talk on the phone, the woman who has taught creative writing and who founded a literary magazine in grief’s wake. The one that lights up talking about narrative arcs and creating three-dimensional worlds.

And all this thinking about the different versions of me since Riley died in 2014 makes me wonder how I got here. How did the accumulation of time and space from Riley’s death allow me to do those things, to get to the place where I can wonder how I should answer that question. Early on, that innocent question felt so offensive. It doesn’t anymore, and when I’m at the checkout counter, I can say, “Fine, thanks. How are you?” But wondering about it in the context of this pending phone call feels splintered. And strange because I am different from before Riley died. And I am different from the time just after Riley died. And I’m different from before the baby was born. I’m still broken, like a bone fracture that wasn’t set and the malunion impairs function longterm. I’ll always be broken, impaired. But I’m also other things. And I won’t necessarily cry when I talk about Riley.

As I downed a hot cup of tea in the moments between scratching things off the to-do list, I figured it out. When she asks the inevitable question, I will say, “I’ve been wondering how to answer that question all day.” Because it’s the truth.

Grief and certain death

My husband has been asleep on the sofa downstairs for almost two hours. I assume that means he’s died. He’d been to the doctor yesterday and wasn’t feeling well today and he said earlier that the medicine he’d been prescribed made him feel funny, a bit wobbly. So now he’s asleep downstairs trying to recover from the thing that has made him feel unwell. Meanwhile I’m upstairs with our crying newborn daughter. I can’t bring myself to check on him. To watch from a distance to see if his chest rises and falls. To listen for each inhale and exhale that would assure me that his heart and lungs continue to cooperate as they work to circulate blood and oxygen through his veins, to his organs, to his brain.

If I check on him and he is dead, it means that I’ll need to call 911 and there’s no turning back from that. It would be another division in my life separating before from after. It would be another grief so loud shouting into my already sore ears. It would pummel me in new ways and bash my heart already bruised from profound grief. And I’d have to raise our newborn as a single parent. Without my love. My rock. The man who has helped me walk the life as a bereaved parent. So for now, I will stay in denial upstairs with our crying newborn and hope that she falls asleep soon. She’s been crying on and off for hours now.

You see, my 11-year-old son died four years ago. And since then, it feels like everyone will die as soon as they’re out of sight. Before school ended my living biological son was off at Yosemite for the week with his class. The whole 7th grade went. Mothers posted online about how much they missed their kids. They said they wandered from room to room sobbing because they longed for the faces and bodies of their babies. The ones that they grew in their wombs and who became tweens. They imagined their kids would walk in the front door any minute from baseball practice or from having lunch downtown with a friend. I wish I hadn’t read those posts. I wanted to reply: “You know that they’re alive, right? That they’ll be home on Friday?”

And while I felt that way, there was a dichotomy. There could have been a bus accident as they drove back from Yosemite. I was (secretly) convinced that there would be a bus accident. An inferno and twisting metal stealing more children’s lives. There are so many ways for children to die. I’ve learned all about them from my grief group for parents whose children have died. They can choke on their dinners; they can have bowel obstructions; they can have cancer; they can die in car crashes or get hit by cars. They can have rare medical conditions; they can have heart defects, like my son. They can get murdered; they can have concussions; they can get crushed in freak accidents; they can kill themselves.

Please stop crying baby girl.

But when she does finally stop crying and she is quiet in her bed, I worry that she’ll stop breathing. That she’ll choke on spit-up and that she too will be gone from this world. All of my beloveds extinguished because life doesn’t care if I’m a good person or a bad person or a mediocre person. Life doesn't care about what I deserve or don’t deserve in the aftermath of my son’s death. One child’s death doesn't somehow protect me from other people dying, from other tragedies, from my own demise. There will be blood clots and pulmonary embolisms. There will be cancer. Or a car accident. A plane crash. Anaphylactic shock. Blood poisoning. It won’t be pretty. Death never is.

I pull the blanket around her body, quieting her flailing arms and her sad cries. She finally settles in her bassinet, and I listen for the pulling and pushing of air, the pushing and pulling of limbs against cloth. She sighs and my muscles relax for a moment. Glancing outside, I see the brittle leaves, the brown stalks, the wilted branches. I let all of the plants in the garden go -- too many things to keep alive. Too much responsibility. I focus on the ones that matter most.

A sneeze followed by creaks on the steps lets me know that my husband hasn’t died. Not today, anyway. He walks into our room and I push my index finger to my lips before pointing to the baby. I sit near her and wait for her to wake, wait for her to cry again, her sounds indicating her aliveness.

And then the cycle will begin again.

Grief and because of...

After Riley died, there was only what I could describe as a primal urge to be pregnant. I imagined it was nature’s way of making sure that our species continued thousands of years ago when children dying was normal because nature was harsh, predators were abundant, and accidents were prevalent. If that urge didn’t exist, I suspect our species would have become extinct.

I wanted it so badly. My mind wanted it. My heart wanted it. My arms longed for it. I wanted to grow a baby and keep it alive with my body. And we tried. After months of negative pregnancy tests, the threshold of what we'd try kept moving. There were intrauterine inseminations, hormone injections, egg retrievals and finally in vitro fertilizations. With those, there’d been three pregnancies and three miscarriages. My body felt broken and my heart was exhausted from the emotional ups and downs. We finally gave up. Letting go was its own kind of grief.

And in letting go, we gave ourselves permission to dream of the not-so-distant future when our youngest goes to college. We began imagining ourselves in Europe or Central America with Adam as the water-sports instructor and me leading workshops for enthusiastic writers. I wrote about it in the last issue of Six Hens. But as it turns out, if you don’t use birth control -- even after many failed pregnancies -- one can get pregnant the old-fashioned way. Even if you’re pushing 45.

Because of those pregnancies and losses, I was six months along before I told anyone. It took me that long to start believing that the pregnancy would result in an actual baby because I knew that a positive pregnancy test didn’t guarantee a baby would be born alive. 

It also took me that long because I was facing an intense internal battle. 

In the three years of successes and failures, it never occurred to me how a pregnancy while in grief would feel. I had not been pregnant long enough to be faced with those thoughts. And how it felt was, well, complicated. How could I possibly be excited for a baby that was only possible because Riley died?

As a result, my pregnancy was emotionally complex and I'd done my best to hide myself and my changing body from the world -- under lots of layers. Fortunately it was winter, so layers were easy. As I quietly shared this news with my closest friends, I cautioned them that it would never be a congratulations kind of pregnancy. And just as it would never be a congratulations kind of pregnancy, it would never be a congratulations kind of birth. Even though births are congratulatory.

You see, I can't get past the reality that if Riley were alive I would never have been pregnant in the first place. And therefore I was pregnant only because Riley died. It's flawed logic, but when someone was excited about my pregnancy, it felt like they must be celebrating the fact that Riley died because the current reality didn’t exist without the other. Even though the intellectual side of my brain knows no one is celebrating Riley’s death, the emotional side of my brain finds it difficult to internalize that.

Ultimately, I do take comfort in the fact that Riley would have been enormously proud to have a new sibling. He’d proven over the years to be an excellent big brother, big cousin, and big friend to our neighborhood children. I imagine it will get easier over time to accept the pregnancy was because of Riley, not instead of. Because of how much I love him. Because of how much I miss holding him. Because of how I have so much love to give. Because of how I long for things to be different for him, for our family.

So, with trepidation, we introduce Riley’s new sister who was born on March 8, 2019. Her first name is Sage. Her middle names are Lois Riley. Lois is in honor of my mom’s sister who died at 4; Riley is for her big brother, who she will love, but never meet. Be proud, big brother. I can sometimes see you in her tiny face.  

Grief and wanting to die

My two boys

In the last four years, I’ve met many bereaved parents. One of the commonalities is that the desire to live vanishes after your child dies. It doesn’t matter if you have other, living children (I do). It doesn’t matter if you have a loving spouse (I do). Nothing matters. Because the worst thing has happened. And all you want to do is go wherever your dead child has gone. Which is away from this planet. Away from the pain, a screaming, invisible pain that permeates into every cell in your body. Because nothing matters at all. I wrote about my death wish in the latest issue of Six Hens.

Grief and hair

There he was sitting in a chair in the row in front of me at tonight’s middle school holiday band concert. We didn’t speak, and I didn’t tousle his blond locks, but I was so tempted. This tempting boy and his messy hair. The hair that looks just like Riley’s hair. His 11-year-old floppy mess, something he called his “straight afro.” Tufts rose in different directions, defying gravity and any comb. 

Between songs, I dug my phone from my purse, poised it to take a picture of my 7th grader who was performing. But in reality, I wanted to take a picture of this rounded head with the perfect, messy hair. This lookalike even wore a black sweatshirt with a red hood, just like Riley had. It would have been creepy, I decided, to take a photo and so I denied myself the pleasure of taking this head of hair home with me as a souvenir of tonight’s visit from Riley. I tried not to stare or alarm his father who sat at his side. 

I desperately wanted to tell Riley’s best friend who sat two chairs to my left. I desperately wanted to tell Riley’s stepbrother and stepsister who sat two seats to my right. I desperately wanted to tell Riley’s dad and stepmom who sat behind me. I wanted everyone to share in this moment, to agree that indeed looked just like the back of Riley’s head. Fortunately I found a crumpled tissue hidden at the bottom of my purse to blot away the emotions that came with feeling so close and then instantly reminded that he, my sweet son, is so far away.

Grief and Halloween

As the van rolls down the winding street, it passes a torso climbing from the gutter. The torso is topped with a head, its face painted white with exaggerated clown lips and topped with a shock of red hair. It's holding a red balloon in an outstretched arm. In the adjacent driveway, a skeleton straddles a motorcycle.

As I head to the library, the grocery store, the Post Office, a row of skeletons lines our neighbor’s front yard across the street from the elementary school. As I drive around town, there are bloody severed limbs on porches. There are partially decomposed bodies dangling from trees. There are bloody mummies. There are blood-splattered tools.

It’s gruesome. Horrible. Triggering. I’ve seen enough bloody bandages, exposed bone, pools of blood, and thick black stitches holding together skin. I’ve seen blood-splattered floors. Blood on the machines designed to hold the bloody fluid pouring from tubes leaving my son’s body. I see these things when I close my eyes. When I’m trying to fall asleep at night. When I have another nightmare. And now they are everywhere during the day. When my eyes are open.

When did blood and death and gore become mainstream entertainment gleefully displayed in front yards? I don’t know how to avoid it because it’s everywhere. I hate this time of year. I hate this holiday. For a society that tends to avoid talking about death and dying and grief, we sure love to slap it around for fun at the end of October.

Should I put my son’s ashes on display in the front yard? Should I scatter his collection of lost childhood teeth on our sidewalk? Or maybe put them in a small bowl next to our mailbox? Should I hang his t-shirts on a clothesline across the front porch? I suspect that would be in poor taste. Because actual death is offensive.

In the meantime, if you pass the middle school in my town, you’ll see a yard with a large decorative -- if that’s what you call it -- tombstone at the end of their driveway. In large letters across the front, it says “RIP Max.” Max is their son’s name. Is it fun to imagine that your child has died? Even when you know a family whose son has actually died? When you've been to their house and talked about grief? Should I put a tombstone in my front yard with Riley’s name on it? Would it still be funny?

I miss when Halloween was about pumpkins and kids dressed as firefighters or dinosaurs or cows and bunnies or Mario and Luigi. And the gore was restricted to rentals from the local video store.

Seriously people, WTF?

Grief and celebrations

Riley with Freddie

There’s a warm glow radiating from the dining room. I can see it from where I’m sitting outside in the dark. I haven’t moved in an hour. It wasn’t dark when I landed on the sofa outside, but it engulfed me and I feel invisible. I like feeling invisible. But I don’t understand the warm glow inside my house. It looks so inviting and I can see the family photos on the walls. I can see the green impasto painting I bought on Etsy, its swirls drawing one’s eyes around and around. You can’t see the dust from here or the cob webs. Everything looks nicer from outside when you peer through the windows. It doesn’t look like the house of family with a dead child.

It also doesn’t look like the house of family whose daughter is celebrating her 16th birthday today, either. There are no balloons or streamers. There are no envelopes or bits of wrapping paper. There are no birthday candles. Although there was a large kitchen mess this morning when her dad made eggs Benedict (her favorite) and waffles (Riley’s favorite) with strawberries and whipped cream. He’s a good dad, that one.

Every single day there is a struggle to be present in the day while being sucked into grief’s vortex. And to be fair, I like grief’s vortex. It’s familiar and I feel like after almost four years, I understand how it works. I’m over here by myself observing other people over there in the real world. I am only an observer these days. I cannot participate in anything without feeling angry or sad or mad. Today, I’m angry. I am annoyed. At everyone. For having a birthday in the first place. For wanting to sing that song that people sing. For being excited about presents or eggs Benedict and whipped cream. For wanting to be together and talk about how exciting it is to be 16 and all the things that kids who are 16 get to do, like get a learner’s permit. It doesn’t matter how many times I go round and round with my therapist. I know intellectually that I’m not actually angry that my stepdaughter is having a birthday or that people want to celebrate that. I’m angry that Riley is dead and that he’s not here celebrating with us or that he doesn’t get to ever turn 16 (or 12 for that matter).

But emotionally, it’s hard to understand those things when all I want is for Riley to be here. My stomach is hurting. Everything is hurting. Mostly my heart, though, even though I am used to feeling my heart hurt all of the time.

Most of the celebrating seems to be done now. I can hear the dishwasher whirring. I can hear the TV chattering. I can see the dog curled up on her bed snoozing. It’s time to get some bubbly water for my upset stomach. I'm looking forward to crawling into bed and falling asleep, the only place where I don't know that Riley is dead.

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 showing up

I’d been up at night, fretting for weeks before the annual run in honor of my dead son. This year, it was held three years, six months, and one day after he died. I’d been trying to think of what to say to all of the kids that would be at this year’s run. Something uplifting about grief? I couldn’t think of anything uplifting. Something profound about showing up even when showing up to confront grief is hard? Something about how grief is forever because death is forever? Maybe a funny story about Riley? Maybe something about the importance of remembering?

I kept feeling like I was supposed to have some speech prepared. Sometime to say about grief to his peers who are now in high school, some lessons I’ve learned, some silver lining crap. I kept picturing my moving speech the foundation of some Ted Talk I would eventually produce on grief since I’m a grief expert these days. But no thought bubble appeared over my head helping me know what to say. All I kept thinking was that I have nothing because grief is awful and unrelenting and forever. I haven’t learned anything. I will never not be sad that my son died. I will never not be angry that he was stolen from me and his family and this life.

I honestly don’t know what I ended up saying when confronted with a group of dozens of his peers and their families who decided to spend the most beautiful day of the month thinking about Riley, running in the heat, and being offered hot chocolate at our house after the run (hot chocolate -- one of Riley's favorites -- seemed like a fabulous idea when I thought of it weeks earlier when it was much colder). As I stood in front of them, their expectant faces watching me, I could hardly find my voice. It wobbled and broke as I marveled at their size, them being there when they could have been just about anywhere.

I was humbled that they showed up. It made me feel slightly less alone that day. Another bereaved mom friend who was there said I had a glow about me. I think it was sweat combined with the way I feel when I’m in the middle of something to do with Riley. When it’s okay to say his name, okay to cry, okay to talk about him to people who don’t feel uncomfortable hearing his name or stories about him…at least in that moment. It’s the closest it feels to him being alive now.

Grief and labor

Labor has begun. Only it isn't in my abdomen, the tightening of muscles as contractions mount. No, this time, it's in my heart, my pulse accelerated. My feet twitch and there is a heightened anxiety coming on. Rapid pulse, almost hyperventilating. This labor isn't about giving birth to a baby. This is emotional labor, the intensity of reliving grief anniversaries. Tomorrow is Riley's 15th birthday. And while his birthday is unrelated to his death, it is a distinct marker that he is not getting older. His shadow life is growing up, a teenager with a deepening voice and peach fuzz and hairy legs, while his actual life ended three-and-a-half years ago.

Fifteen years ago tonight, I was 10 days past my due date with my first baby. Contractions would begin around 3 am on April 2, and would continue until 11:20 pm, when my 8 pound, two ounce boy entered the world in a frenzy of activity. Doctors surrounded us, even though I was oblivious to their concerns, about his heartbeat that had decelerated during contractions. About his failed APGAR tests. Tonight, in this heightened emotional state, I have created a flurry of tasks to accomplish. I'm too twitchy to be still.

Riley came into the world, and in a matter of hours, everything stopped being real. The certainty of walls and ceilings and the physics of gravity and the science and technology that gave me a monitored hospital birth were gone. I went from being an exhausted postpartum woman to an exhausted postpartum woman who was told that in order for her infant son to survive, he would need three open-heart surgeries. And he would need the first one in a matter of days.

We agreed to those life-saving surgeries. And then we agreed to some more. And my son still died. And I continue to get donation requests from the hospitals that treated him. They show pictures of children who have survived, who have lived beyond expectation. Those children are smiling and their parents are smiling. And yet, my son has died and they think that I want to give them more money. I write "Return to sender" on the envelope. I also write, "Please remove me from your mailing list because my son, despite his six heart surgeries, has died."

Tomorrow will come, and I will wake and put on my Riley grief bands. I will wear my Riley necklaces. I will wear green, his favorite color. I will hike in the hills near my house and visit his tree stump decorated with his name. I will donate blood to help some other person in need of blood. I will sob and the technician will ask if it hurts and I will say that my arm feels fine. I will make his favorite dinner. And I will hate that he is dead. Just like all of the days. And I will wait for this nightmare to end, the one that makes my son dead while I am alive. I just want to wake up into a world where my son is in 9th grade. Where he is at the table eating Honey Bunches of Oats or garlic toast for breakfast. Where he will get 15, and 21, and 30, and 75, and all of the ordinary years in between.

Grief and introductions

There is a woman. You might know her. She is tall with dark hair and she was on the trail Tuesday with her two dogs and two friends and their dogs. I know her friends, but I had never met this woman before we introduced ourselves to each other that morning. This woman who I'd never met before has a son. He's in 9th grade now, but he went to Central Middle. Just like Riley. And I can't stop thinking about her. Or about her son.

I keep wondering if her son was in Riley's 6th grade math class before he died. Maybe they sat next to each other. Or maybe he was in his English class. Maybe he sat in front of Riley. Or maybe behind him. Or maybe he was in orchestra with Riley. I wonder if he also played viola for the few weeks of the school year that Riley played viola. Or, perhaps he played cello when they were both in 5th grade and Riley played cello. Did they talk to each other at recess? Did they ever have lunch together? This boy who went to the same school as Riley and who was also a 6th grader when Riley died. They must have known each other. Or at the very least, they must have been acquaintances. The school isn't that big, after all.

From there, I wonder if this boy has a handprint on my garage door from the first anniversary of Riley's death when we made our first handprint memorial and dozens of classmates came to our house and stood in line to participate. Does he have a handprint on Riley's bedroom door from when we made our second handprint memorial? The one with the Tabasco Riley bottle? Did this boy talk about Riley with his mom when he found out that one of his classmates had died? His mom, this woman I'd never met, who happens to have a son who is the same grade that Riley would be in, if he had survived his last heart surgery. The surgery that was supposed to give him a normal lifespan. The surgery that was supposed to let him run and fly on airplanes without oxygen. Our sons must have known each other. Maybe this mother and son came to Riley's memorial after he died. Maybe they ran the Riley Run together and maybe that boy has worn a Riley Run t-shirt to school.

Does this woman know about my son at all? It's possible that her son didn't know Riley and never mentioned him in their home. That idea paralyses me. It's one of the reasons I'm intimidated by this unknown woman and her son, who I have been thinking about since Tuesday morning. She either knows about my son. Or she doesn't know about my son. If she does know about him, she didn't mention him when we introduced ourselves to each other on the trail as the dogs trotted around our feet, their tails wagging.

Then again, I didn't mention Riley to her either, even though we talked long enough to know that she and I have sons who went to the same school at the same time. I wasn't brave enough to ask if her son knew Riley. She wasn't brave enough to say that her son knew Riley. Or didn't know Riley. But if she doesn't know about my son, then Riley's life and death were invisible to this family who also lives in my town, whose son was in the same school and in the same grade as my son who is now dead. Impossible, yet possible. And frightening.

It's only in retrospect, though, that I realize that she may not have known that I was Riley's mom. I feel like I walk through the world with a sign above my head. But how could she know that I am Riley's mom, unless I say that I am Riley's mom? Sometimes it's so hard to say out loud. Not because I don't want to say his name. On the contrary. I want to say his name, but I want to say it, knowing with certainty that his name and his life and his death will be treated with the tenderness it deserves.

If I bump into this tall woman with dark hair on the trail again, perhaps I'll ask her so that I don't have to wonder anymore. But taking a chance is scary because I put my wounded heart in a stranger's hands. Will they treat it with the tenderness it deserves? So much tenderness is needed, all of the time, because my heart is so sore from all of the beating it's done without him these last three years.

Grief and Becoming Tapatio: Day 3

Who could have guessed that today was going to be tricky draping fabric day. What I imagined was a pretty straight forward bit of red paint under Tapatio Riley's torso turned out to be rather complex. Something about how the lowlights and highlights blend from one to another and back again so quickly as the fabric folds over on itself. It's not perfect, but once I put the white lettering on top of it, I don't think the imperfections will be as noticeable. The neck tie is similarly complex with folds, shadows, and highlights. Will definitely need to tweak it on the next painting day. I also started on the yellow jacket. I ran out of yellow house paint and resorted to kids' paint. Needless to say, it's just not the same. It is far too watery, and despite going over it several times, my sketch lines are still visible. But at least I can get an idea of how it's coming together. #feelingpleased #HotSauceRiley #RileyForever

Grief and my beating heart

Sunset, before the world falls into black.

Pressing into my jugular, I wait. Wait for the irregular heart beats--they don’t happen much anymore. Stress, they said. But I listen for them with my fingers. I want wrong beats to exert themselves. I keep anticipating more palpitations. Side effects from the medicine, they said. It’s terrifying when they happen, especially if I’m driving and everything falls into a black tunnel for a moment. But there’s something about wrong beats or extra beats that make me feel connected to Riley. Grief broke my heart. So I listen with my fingers pressed into my neck, feeling each beat as it pushes back against my fingers. Waiting. Waiting. Waiting for my heart to be in sync with his. Just like it used to be.

Grief and Becoming Tapatio: Day 2

Tapatio: Day 2: Riley in unfinished sombrero

As the second anniversary of Riley's death approached in October 2016, I felt the need to take his love of hot sauce and somehow make him part of it. On his bedroom door, I transformed his name into his favorite Green Tabasco. From there, we carted his bedroom door to school and his classmates put their handprints on his door. We then put his bedroom door back in place. So now his Tabasco name and all of those classmates' handprints hang in the upstairs hallway.

On the third anniversary, I transformed Riley's name into a Cholula hot sauce bottle. I replaced the woman on the bottle with Riley's likeness. It was the first time I painted him. It was terrifying because it felt that so much was at stake. It felt like final product would be a direct representation of how much I love him. When it was done, I loved it, although the general consensus was that I had painted a 20-something-year-old version of him. 

And I've started again. This time it's transforming him into a Tapatio hot sauce bottle. This is how he looks on Day 2 -- his 11-year-old likeness in an unfinished sombrero. I wish I'd been documenting the progress of these painting projects from the start. Earlier today, for example, Riley's mouth in this painting was lower. I wasn't sure if I should move it. After talking to his brother and grandmother, I moved it up about a centimeter. And when I stepped back, I couldn't believe how much it looks like him. It was a good decision. I stared into his eyes all afternoon. #HotSauceRiley

Grief and flipping a switch

My kids; Riley is the green one, obviously.

It’s not like I can flip the switch and stop wanting a baby. I thought it could be that easy; just decide to stop. But it hasn’t been like that at all. Sure, I’ve stopped going to doctor appointments that examine my ovaries and the follicles ripening within. There are no more estrogen pills or progesterone suppositories. I don’t take the CoQ-10; I don’t take the Inositol; I don’t take the Omega-3s; I don’t take the prenatal vitamins. I don’t take the others whose names I’ve forgotten. There are no longer three weekly pill organizers on my dresser packed with my morning, afternoon, and evening pills.

I keep thinking, now I can focus on me. Take the pilates class or learn to play piano. Go on some adventure that I wouldn’t be able to do with a protruding pregnant belly or a new baby. Watch me sleep in on Sunday morning--no one kicking my bladder. Watch me have a glass of wine or three--no reason to stay sober. Listen to me crunch on another cookie--it’s not like eliminating sugar helped my uterus hold any babies.

Sure I like fantasizing about exotic travel and wondering what my husband and I will be doing after our youngest goes off to college in seven years. And I like not being bloated and swollen from the hormones. But it’s not that easy to just stop the yearning. It’s been a complicated dance with grief and desire in the wake of my son dying. This dance must have been nature’s way of ensuring that our species continued thousands of years ago, when most babies likely died. This primal urge to procreate in the face of a child’s death.

Didn’t know we’d been trying to have a baby? Don’t feel left out. It was a carefully kept secret because I couldn’t bear the idea of anyone asking me if it was pregnant yet. I broke my silence about it in the latest issue of Six Hens.

There are still sharps containers in my closet, though, packed with used syringes waiting to be dropped off at the local fire station. There are also the unused syringes, the different sized needles for liquids of different viscosities, depending on whether they were meant for the fat in my belly or the muscle in my ass.

Now that we’re done trying, the desire still lingers quietly. But it’s more like a spiderweb on the on the bookshelf rather than a wasp in my nose. None of it really matters because with a baby or without a baby, Riley is still dead. Every so often, I’ll see him out of the corner of my eye. Like last night, when his brother put on my rectangular glasses. There he was for a second in my camera’s viewfinder. Still just out of reach.

Grief and desire

When my dad died in 2013, I never had this yearning for a new dad. I never wanted my mom to go out and find a new husband so that I could take the edge off of loss by having a new father figure to love, to talk to on my birthday, to be a grandparent to my kids.

But when my 11-year-old son Riley died in 2014, something happened. Desire turned out to be grief's unexpected sidekick. And through this primal desire to have a baby, I hung the tiniest bit of hope. A new baby wouldn't be instead of Riley; it would be because of Riley. I kept telling myself that if I could grow this because-of-Riley baby, a healthy baby, and keep it alive with my body, then somehow that new life would sand down the edges of grief. This enormous, unrelenting grief.

It seems that the universe doesn't give a shit about my plans for a because-of-Riley baby anymore than it cared whether my son lived or died. Because the universe doesn't care about me or you or my son. Nor does the universe think I deserve anything in the wake of my son's death. I wrote about it in the latest issue of Six Hens.
#RileyForever

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 muddling through

I have no idea what I’m doing or how I’m muddling through grief. But I am. I go to sleep every night and wake up every morning because my heart keeps beating and my lungs keep sucking air and so on. Just the other day someone said to me, “I wouldn’t survive it.” And I realized after the fact that the only reason I’m “surviving it” is because I haven’t given in to the urge to kill myself. At least I now know what my response will be the next time someone says something that asinine to me.

Grief and black and white

Neglected garden animals

At first, I rejected the idea of participating because I don’t like participating in things. Grief has made me a curmudgeon. But I kept thinking about it. If I were to participate, how could I possible sum up grief -- my grief -- in black and white photos? It seemed an impossible a task. How could I possible capture the idea that half of me died when my eleven-year-old son Riley died three years ago? How could I possibly sum up the weight, emptiness, isolation, anxiety. How could I manage to capture my inability to make decisions, how seemingly small tasks paralyze me, how it's easier to give up than it is to try because tying equals failure. When trying to move forward equals several steps back. When all of it makes me want to hide in bed for a few more hours.

Tattered flag

Between coughing fits -- I'm several days into a cold -- the plant on the coffee table with its brown edges and drooping fronds etched with crispy patches caught my eye. It’s half alive, I thought, clinging to life. Overwatered. Drowning. I grabbed my phone, played with the filters and made it black and white; it looked unrecognizable with its sharp lines and faded spots. I feel unrecognizable, too.

Garbage from the orchard

I headed outside. There was tangled rope in a box of garbage collected from the orchard last weekend. I feel tangled, trapped, unable to move much of the time. I feel like garbage, useless, unwanted, a burden. Even when I'm reassured that I'm loved, lovable, wanted.

Dead plants

There were the broken wood animals, their missing ears and broken snouts. It started as a project with the kids the summer after Riley died. But they are neglected. The tipped over penguin, forgotten. Unloved. Alone. Hiding its face, avoiding eye contact, hiding behind others. How did this happen?

Tattered plastic

From there, I noticed all of the soil that used to be lush with tomato plants, zucchini, and basil. Now barren, neglected garden boxes are everywhere. If there is any plant life, it’s nothing like it's former self. Shriveled, crisp, dead branches drooping or parched and brittle. Uncared for. The rosemary bush continues to grow, but it looks stressed.

Webs and debris

Kites, once vibrantly reaching 30 feet into the sky, are tattered, torn, faded, limp. First seen at a house we'd rented for a week in the summer after Riley died, I loved how they sounded like sails luffing in the wind. I ordered several to brighten our yard. Now they, too, are garbage. Disintegrating plastic encircles the trampoline. The mesh guard on the sides is torn like a large mouth waiting to eat children who bounce toward it.

Hundreds of shriveled plums never picked cling to branches. How did we miss plum season? And fig season? And pear season? Dropped fruit waits for rats to nibble at its flesh.

Tipped over pots, any seedlings neglected and shriveled. Dirt in piles near the pots that wanted to give life.

Disintegrating garden art

Grief is everywhere. Neglect dominates. Barren. Unkempt. Untidy. Damaged. Broken. Turns out my yard is the physical representation of grief. It is so obvious -- I couldn't believe how easy it was to see grief all around me -- yet I had never seen it before. Shocked by this realization, I headed into the house. As I sat on the couch and uploaded my pictures, it made me wonder what else I have been blind to these last three years. 

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.