The duality of grief

My heart was pounding before I opened my eyes. I’d been in the middle of a bad dream, but once I was awake, the slapping of water against fiberglass shifted my attention as our boat rocked side to side. This anchorage at Great Guana Cay was rolly because of its proximity to the Atlantic, its shallow sandbanks, and currents pushing through narrow cuts. The turbulence combined with anxiety from the dream put me on alert that someone was trying to board our boat. I listened for footsteps and thought of hatches we may have left unlocked.

It wouldn’t be the first time someone boarded our boat in the middle of the night, though it would be the first time while at anchor. But that’s not what was happening. It was just the motion combined with residual fear from the bad dream. And the dreaded day with its steel-toed boots waiting to kick me in the stomach. I reached for my phone: it was 4:43 a.m. I turned off my 5 a.m. alarm and forced eyelids to open wider, alerting the brain that it was time to sit up.

With 350-square-feet and four people, there isn’t much personal space on this boat. Or alone time. Our seven year old wants to play beginning at 7 a.m. and our 23 year old is ready to socialize as soon as the seven year old goes to bed. A few weeks back, I woke early thinking about a proposal I’d written and then got out of bed to make a few changes before hitting send. Being at the computer in solitude for a couple of hours before others woke felt like discovering a secret. No one talked to me or asked for a snack. I’ve been getting up in the dark intentionally ever since. I’ve been using the time to write and think.

On that particular day I was thinking about the calendar. It was Mother’s Day. I am estranged from my mother; the boy who made me a mom in 2003 is dead. The day also marked the crossing of an invisible chasm. It marked the day that Riley – my 11 ½ year old son – had been dead longer than he was alive. With the help of a pod of compassionate humans, I had thus far endured 4,219 days without him. 

In the same way that I have known that his younger brothers would pass him in age and I know that his seven-year-old sister will one day pass him in age, I knew this day would come. In reality, it was just another day without him. He was dead yesterday and five years ago, and he will still be dead tomorrow and five years from now.

Nonetheless, my body’s grief calculator had felt the day coming. My buttons have been more easily pressed, making me erratic and distant. In my endless calculation of life and death, I have been visualizing things that can be made and unmade: a pencil sketch; a kitchen mess; a bed. I cut my hair with kitchen scissors shortly after Riley died; it grew back. Addition, subtraction. Subtraction, addition. But none of those are like the birthing of a child and then bearing witness to their death.

A child’s death is not the quiet undoing of a life. It is an explosion that leaves an invisible, weighted menace that must be heaved with you wherever you go. It is shouty and bossy and distracting and demanding and unruly. It carries a stick and whacks your knuckles if you fail to follow its ever-changing rules. It uses mind tricks to make it hard to concentrate before it trips you on the stairs. Then it kicks you, and then tells you it loves you. And when the menace has done its job and it’s gotten you to push your loved ones away, you find your child. And sitting with your dead child without distractions feels like air and love and peace.

I loathe the menace and its abusive ways; I appreciate the menace for guiding me back to Riley. For clearing the path, for creating space where I can sit with my boy uninterrupted and roll in the sadness, frustration, envy, disappointment, longing, rage, and blame. Once I punch through those, I find closeness, connection, tenderness, and love. So much love. I can almost feel Riley's hand in mine and the weight of his body in my lap. I can hear him talking about the SF Giants' lineup or humming while doing his homework. I can see snuggling his stuffed penguins and dripping hot sauce onto almost everything. And when I soak up moment, I can almost hear his voice saying, mom I love you, and I imagine pressing my nose into his hair and inhaling before and a smile spreads across my wet face.

This is the duality of grief. On the surface is the visible you that other people see and interact with. The you that people see can smile and talk and who enjoys making bagels and can be upbeat and look forward to running, hiking, or line dancing with friends or family. That you looks like a whole, nearly functioning person who has hard days once in a while, typically around anniversaries and birthdays.

The other you has the ever-present sidekick. It is always needling you, being demanding, rubbing interactions with guilt and longing, making sure that you are fully aware of your child's absence. That your child isn't at and never will be at the dinner table, in college, working at some job, have a significant other, or have children of their own. That they will never call or text or visit. And with its continual reminders of the absences, the menace is trying to stop you from enjoying your other children, your partner, the people who have loved you through all of it. So much energy is expended trying to keep the menace out of sight.

In both versions, you are missing something and feel incomplete and conflicted and guilty and sad. At least that’s what’s happening over here – grief is unique. And on this day, for me, on the other side of this invisible chasm, I’m trying to ignore the menace. I'm trying calculate how to balance how lucky I am with the grief. I have a great life, a great love, a great family. And yet... 

Both are true. The grief makes me feel ungrateful for what I do have. Enjoying what I have or being joyful in the moment makes me feel guilty.

I don’t know how to hold both yet. There isn’t one without the other. They are woven into an elaborate knot. Perhaps the problem is that I have an expectation that I should be able to untangle it. Maybe that’s not how this works. Maybe I need to make peace with the menace. To be okay that there is pain in the joy and love in the pain. To be okay with the menace making space for me to be with Riley (although it would be great if the menace could have less of a negative impact on my family).

After getting texts from my son and a call from my bonus son and breakfast in bed from my daughters (along with a homemade card), my heart felt full and empty, empty and full. Happy, sad. Guilty, angry. Alone, loved. Whole, broken. Broken, whole.

Grief and horizons

As we cross the Gulf Stream at the helm of our sailboat, I’m struck by the line between sky and water. It is a remarkably straight distinction between two worlds. It cuts across the distance in every direction. I hold the sight, concentrating so that eyes and brain come to an agreement to retain this view – it is special. 

Looking into the distance, my thoughts whisper out to it acknowledging that no matter how far we go toward it we will never reach this artificial line in the same way that you can never get to the end of the rainbow.

I swivel my head from left to right and as far as I can see, there is only this line, these shades of blue, this breeze petting my face or causing hair to whip around ears and into my eyes, depending. The uninterrupted line is like something drawn with a ruler in the distance. 

Many of us have seen a version of this – a slice of this separation – standing on a beach looking into the distance. But as we cross toward the Bahamas and the 360-degree view surrounds us for the first time, it feels like an important message from the universe. But I don't know what it is just yet.

Grief began driving us to upend our stationary life in California after Riley died in 2014. Last summer our plan was nearing fruition as we gave away most of our things and filled a tiny storage unit with sentimental items. Being on the water is the culmination of our years of planning, the beginning of our escaping, of running away. All of it promised to reduce grief's weight. 

Then we drove. And drove. And drove. First from California to Florida. Then from Florida to New York City. Then after three months in England, we drove from New York City back to Florida. 

Grief stayed the same.

If anything, being away from Riley's things, his bedroom, his clothes, his toys, his school, and the baseball fields he played on became a new, weighted layer of grief to manage. When we finally moved onto a boat in February, I thought settling into our new home would be the key to finally shifting grief. And at times, being away from the place where Riley died was a relief because I had the illusion of control – thinking I could decide when to let it pummel me. But the sadness continued to course through me without an appointment, just as heavy. 

I had been clinging to the hope that each step would allow grief to soften its jaw... Once we move out of our house. Once we drive across the country. Once we find a boat. Once we move onto our boat. 

But Riley’s absence, his death, his hospitalizations, his surgeries, are still ever-present. At the same time Riley’s smile, his laugh, his floppy hair, his nail-nibbling, his love of penguins – are equally real. The lists hurt my heart in different ways, but they both hurt. 

We've seen dolphins and sea turtles and flying fish and a sting ray glided its body over my toes. We've padded along soft sand and splashed in warm water. Grief continues to clamp its unrelenting jaw around me. Leaving Fort Lauderdale was my last once we. 

That realization has amplified everything. And when the hurt is bigger, like it has been in recent days, I pull away from the people I love who have run away and toward this sailing life with me. I retreat into a shell of unfixable sadness. And my hurt hurts all of us. I become short-tempered, brusque, erratic – a version of myself that I am not proud of. 

I'm hyper-aware of this privileged opportunity to run away. I'm also hyper-aware of how self-indulgent grief can feel. The world is full of tragedy, and yet the clay that shapes my being is my beautiful boy and his death. 

When the sadness is inside, it doesn’t matter how pretty the view is.

I can't help but try to make sense of this realization. Walking along the beach and seeing the storm clouds bubbling toward us, I know that no matter how far ones goes toward it, the horizon is always in the distance, always unreachable. And that line between sky and sea is an illusion. One rises above the other. Yet, the sky is full of water and the water is full of oxygen. They are connected through the water cycle and one will always be a part of the other. Like life and death. 

Riley is my past; he is my present. There are the experiences he had; there are the experiences he will never have. The past is full of possibility; the present is full of memories. Riley is here, Riley is gone. Riley is everywhere. Riley is nowhere. There will never be a Once we that provides a reprieve. Like the horizon, that idea was just an illusion. 

Grief and thrifting

My boots shuffled along the long aisles of stained linoleum. My hands slid hangers along the rack to look at the jumbled assortment of tops and jeans and kids jackets and pajamas. I did not find a small rain jacket for my daughter. I was not surprised. I wandered along, not sure of what else I was looking for, but I knew that if or when I found it, it would make itself known. I picked up a coffee grinder. I picked up a backpack covered in unicorns. I found a small North Face fleece jacket in a pile of duffel bags and tucked it under my arm. I found a pair of gold Mary Janes just the right size for my kindergartener. In the checkout, I spotted a sudoku book on the shelf next to me and remembered how Riley and I used to do the puzzles together. I fanned through the pages and realized it was unused. I kept it and imagined Riley whispering suggestions to me in the months to come as I attempt to solve the harder puzzles.

Grief is chaotic. Thoughts don’t make sense. The world feels upside down. There were times when I couldn’t believe that walls were sturdy, when I questioned whether everything I saw was a mirage. There were times when I wore the same clothes pulled from the floor next to my bed for nearly two weeks straight. I couldn’t fill out a form that would allow our surviving family members to go to a grief support group. The words didn’t make sense. The questions were too overwhelming. I couldn’t hold a pen. Friends left food on our porch because I didn’t know how to go to the grocery store. Being in public was too scary, too overwhelming, too unknown. I would see women and they would turn away from me. I would see women and I would turn away from them. I was famous in my town, but not in a good way.

I say was because it’s been so long now. People’s lives have moved on. Riley’s peers have moved away. My surviving children’s peers have moved away. Riley’s death is old news. For other people. But not for me. The waves are just as turbulent, though they knock me over with less regularity.

Grief is also full of guilt. I grew my baby wrong. It was a mistake with epic, life-altering consequences. My confidence plummeted. And for many years, I pulled the brim of my hat over my eyes; I kept my eyes down; I sat away from other moms and families at little league or basketball games.

Grief is full of fear. I was fearful of getting other things wrong. And I have gotten them wrong, though with less consequences. I have taken my children to their practices at the wrong times. I have driven to the incorrect locations. I have gotten lost while driving home from familiar places. I failed to renew my driver’s license, accidentally driving around for months with an expired license. I have dropped a dozen eggs. I have had my phone silenced when one of my children needed to reach me. I didn’t fix the gate that separated our dog from our chickens, and the chickens were killed. Most, but not all, of this was inconsequential.

All through the years, though, the thrift store is one of the few places I have felt at home, and I haven’t understood why. But last week, as I did a TikTok about my thrifted outfit with fall vibes that makes me feel cute and confident, I gave myself some space to consider that question. If I could pull a cute outfit from the jumbled chaos of the thrift store, I could bring order to chaos. I could take something unruly and make it orderly. I could assemble a mishmash and make it feel as if it was all made to go together. It gave me a small amount of control. I can accomplish this small thing. Mistakes only cost a few dollars. I am capable. And being capable of this one thing has given me the smallest amount of confidence. 

Plus, putting on something cute and feeling good in my clothes is an exercise in self-care. And that is huge for this grieving mom. 

Take your platitudes and leave

There was an article in the NY Times yesterday about what not to say to a grieving person. It said never say, “Everything happens for a reason.” 

And that is good advice because when you say “everything happens for a reason” to a grieving person, they may want to punch you in the face. Because most people are polite, they will not punch you in the face, but don’t be surprised if you are kicked out of their inner circle of safe and trusted friends.

People said this to me shortly after Riley died. They also said this to me after Riley was born and we were told that he would need three heart surgeries to survive (though he ended up having six during his 11 years). Luckily for them, I restrained my fists. But it makes me wonder how this asinine phrase became a popular reply to grief. Please give me an example of when this has been useful. Seriously.

I imagine it comes from religion where we’re meant to put our faith in some greater power who has a master plan. And the only way we can make sense of a child’s death, or a young parent’s death or your house being swept away by a hurricane, or any other tragedy, is that it must serve some higher purpose.

But, honestly, life is random. We are powerless. And if we acknowledged this unspoken contract with the universe, we’d probably stay home more often. Because we get into metal boxes and move at high speeds on highways. We let our kids go to school. We know that people walking around are carrying guns. We know that there are contagious diseases. We live in earthquake zones or in places dubbed "Tornado Alley." We know that there are alligators and bears and bacteria that can overwhelm our immune systems. Every single day we don’t die is pretty astonishing. And getting to live another day is not because some higher power granted me the opportunity to do so because I am good or deserving. It is just luck. I think luck is too terrifying for most people to acknowledge.

So, what do you say when someone you love is faced with unimaginable tragedy? The article recommended: “I am so sorry for your loss. I don’t know how you feel, but I am here to help in any way I can.” Or something like: “I am always just a phone call away. I am here for you.” And, of course, if they are sharing with you how they are doing, validate their feelings. 

The article reminded me that I've been wanting to read Everything Happens for a Reason, and Other Lies I've Loved, by Kate Bowler.

If you are incapable of being there, of sitting with discomfort, of saying something less painful than "Everything happens for a reason," please, just take your platitudes and leave.

Grief and the ADAA

I just had a piece published on the Anxiety and Depression Association of America's website. They have a great library of personal stories that you can filter via disorder (anxiety, panic attacks, bipolar, grief, substance abuse, etc.), and I'm a huge believer in the power of connecting with others through stories. 

Over the years, I have been in individual therapy, and I've spent years in couples therapy. I spent a year in a support group for families who have children with congenital heart defects and three years in a support group for bereaved parents. (Just need to acknowledge how fortunate I am to have health insurance to cover chunks of the costs... access to this stuff should be a right, not a privilege.) And through all of it, I've learned a lot about self-care and supporting others who are struggling. 

It feels good to be reading. It feels good to be running. It feels good to be writing. It feels great to get published. Go forth and read!

Grief and self-promotion

I used to write while wearing platform shoes in the hopes it would help build my writing platform. It didn't help. For years, I've held onto the illusion that writing and sharing powerful stories was enough. I wanted to focus on my craft and not on the promotion part of being a writer. But it's not working, even though I have a small arsenal of dedicated readers - thank you readers. So, over the weekend, I started using TikTok to connect with other writers and people who read memoir (I have 17 followers!). It’s a bit nerve-wracking, since writers are usually invisible, but I've decided to be brave. That said, I’ll think I’ll dust off those platform shoes and give them another try as well. It can't hurt, right? In the meantime, if you're on TikTok, check me out.

Grief and your 21st birthday

Walking hand-in-hand with your little sister to school, the school you went to, was surreal on your birthday. I could hear the sounds before we even rounded the corner at the bottom of our hill. Laughter came at us before we could see any smiles. We could hear car doors slamming before we saw any cars. The bell rang at the neighboring school. 

As we got closer, so much came into view. There were hundreds of students with messy hair and dusty backpacks. There were water bottles and lunch boxes. There were light-up sneakers and jackets tied around waists. Some children were helping to raise the Californian flag on the flagpole. Some children were opening car doors in the drop-off line. Some were huddled with friends, giggling. Some were walking alone towards their classrooms. I looked for you. I always look for you. 

Just before heading up the ramp toward her classroom, I just stopped and took it all in. A school full of students, hundreds of students from hundreds of families. 

Then it occurred to me. I felt my head shaking back and forth in disbelief. None of them, not a single one of those kids was alive when you were alive. None of them were even growing in their mama’s bellies. Not a single one. So much life since you died. An impossible amount of life has happened in the last 10 years. 

After your sister tucked her backpack into her cubby and found her name card, I kissed her head and breathed the scent of her hair. Then, with green nail polish in honor of you and your favorite color, I began to run. And run and run and run.

Love leaked from my eyes and it was even harder to breathe than normal because crying and running are not very compatible. And while I was running, I was sad and mad and jealous and angry and sad some more. Even when thinking of your smile. Even when thinking of your laugh. Even when thinking of your jokes.

Do you know what baseball and waffles have in common? The batter.

Even when thinking of your love for school and books and reading and math. Even when thinking of you with your best friend (who is now in college, who is now old enough to buy alcohol). Even when thinking of you sitting on my lap. Even when thinking of you making garlic toast for breakfast. I love you.

Grief and the slow erasing

Just like I’d done dozens of times, I’d clicked “Add to cart.” No big deal. Only this time it felt profound. And after fretting about it for ages and wondering what slippery slope I was stepping onto, I clicked the button. What purchase could cause such internal turmoil? A twin-sized duvet cover patterned with whimsical pink and blue and gray unicorns with rainbow-colored manes. It’s for the little one’s fifth birthday.

Delighted in the downpour

She will love it. She loves unicorns and rainbows and flowers and fairies and mermaids and princesses and dresses and tiaras and beaded necklaces and pretty much anything that is pink or red or purple or sparkly or glittery, even though I’ve provided her with trains and Matchbox cars and trucks and shovels and so many things that are green.

Green was Riley’s favorite color. And I have lots of green things. I was even given green blankets when she was born because she was born in grief’s wake for my boy who loved the rain and green and Matchbox cars and trains and Tabasco and garlic and olives. And, although she loves olives and garlic, and garlic-stuffed olives, and she liked Matchbox cars and trains for a while, she’s her own person with her own interests. That, and through preschool and transitional kindergarten, she’s been exposed to kids with Frozen backpacks and twirly dresses and sparkly blankets that look like mermaid tails. And so when she’s in the bath, she asks me to comb her mermaid hair and she pretends that the washcloth is her tail.

The hard part isn’t that she likes different things from Riley, although I really, really did enjoy putting elaborate train tracks together for the months that she was into that. We’d roll our wooden trains over the bridges and through the tunnels just like I did when Riley was small. The hard part is that I wanted to breathe life into Riley’s things for longer. I wanted her to pick up where he’d left off and in using his idle things, give me another chance to be with Riley in my thoughts as I remember the hours we did those things together when he was alive. In fairness, at 11, there weren’t many train tracks or cities drawn on cardboard for Matchbox cars to roll along.

For the 18 months he lived in this house, he had a green duvet with different colored green dots all over it. He picked it out at IKEA when he got his very own bed. For a long time, my boys shared a queen bed and a single queen blanket. But when we moved into this house, I took them to the store and that’s what he chose. His brother chose something gray with bright orange and red swirls. And Riley’s green duvet has been on his bed in his room since he died. It’s been mostly idle.

Before the youngest came along, I would lie on his bed and smooth my face into his green pillowcase and hug his Freddies. And after she was born when she was nursing several times a night, I would sometimes sleep near her in his bed with the green sheets. It’s been her bedroom her entire life, more than three times longer than it was Riley’s room, even though I still call it Riley’s room. And once she switched to a big bed, it was Riley’s bed she began sleeping in and Riley’s duvet she’s been sleeping under.

It's her room; it’s Riley’s room. Riley’s treasures and belongings are still there, but there are so many other things there too. Sometimes it’s hard to remember which is which and what belongs to whom. And, of course, she says things like, “Mom, Riley says I can play with his marbles” which makes his things her things too.

She didn’t ask for a different duvet. She never said she didn’t like the green one. I just want her to be seen as a separate person and to acknowledge her preferences. So, because her fifth birthday is today and she loves all those pink things, I decided to get her that new duvet cover – the one that matches her interests. I suppose I’ll fold up the green duvet and the green pillow case and the green sheet and put them in the closet near Riley’s medicine that is in a ziplock bag, with Riley’s clothes that are still hung, and next to his socks and pajamas – things I’d hoped she’d wear when she was big enough. Though she probably won’t. She’ll have shirts and pajamas covered in rainbows and fairies and mermaids. 

This shrinking or contraction after someone dies happens all the time. Out with the old, in with the new. Making space for whatever is next. She didn’t ask to fill Riley’s shoes, not that she could. You cannot replace a person with a different person. It’s just another shift, another goodbye. Another folding of time.

Riley's green things will be mine to visit when I need to time travel and be with my boy and his beloved things. I cannot help but wonder what will be put away next and what shift will happen that will make his life less visible. It all feels like a slow erasing. 

Grief and alternate reality

It was a white legal-sized envelope like any other. It had fallen through the mail slot just like any other. It had my name on it. It was from a charity that we had donated money to. The day I opened that letter, the sun had shone down on the driveway as I left the house to walk the youngest to school. We held hands. We talked about flowers, then sang about them in a song we took turns making up verses for. We waved to the bus driver who trundles down our street each weekday morning.

The day that the letter landed on the entryway floor was a day sandwiched between the holidays of thanks and gratitude and celebration surrounded by family and friends. All days are hard, but those weeks of cheer and joy are especially hard because I don’t feel cheerful on the inside. I don’t feel grateful on the inside, even though I have things to be grateful for.

The letter didn’t arrive until after lunch, though. I only grabbed it after the little one’s nap on my way to give her a bath. She bubbled in the water while I sat with my laptop perched on my thighs. There were email messages to reply to. There were Breaking News messages from news organizations I subscribe to. When I was done replying to or scanning through the messages, I put the warm device on the floor next to me. I picked up the stack of mail. There were catalogs and fliers and bills. And this letter.

As I read the words – this near-form letter from this charity – my boy's name stood out. “Thank you so much for your generous year-end donation in memory of Riley Norton,” it said. It occurred to me that whoever typed this letter typed a multitude of others, replacing the name of the donor and the name of the person honored or remembered through the gift for each one.

He was just a name to them. A name to type, then forget. The admin typing up the thank-you letters has no idea he’s an 11-year-old boy. My 11-year-old boy. Nor do they care. I’m sure little, if any, thought is given to these names. These dead people. If they were curious, I wondered how likely it was that they would have found him online.

I retrieved the laptop from the floor and opened Google. I did a search for Riley Norton died. The first result was for a man of 85 who lived in Utah and died in 2019. There were some results relevant to my boy's life and others connected to old men. I went back to the first result, the one for the 85-year-old man. I read that Riley Norton's obituary and stared at that Riley Norton's photo. The old man had an oblong face and white hair. Could this have been my boy? Could this have been my boy’s alternate reality if he had been born with a working heart and the privilege of long life? 

As I stared at the photo, I squinted a bit and tried to see my boy in this old man’s face. Loving husband, father and grandpa. Then my vision blurred as I thought about my boy as an old man with grandchildren. Or perhaps the blurred vision was me thinking about how my boy was never the granted opportunity to be an old man with grandchildren. Or even a teenager with a job or a girlfriend. So much lost opportunity. So much lost. For him. For me. For his siblings. For his grandparents. For his friends and classmates and teammates. Thinking of all of the things that would never happen felt like every single life experience had been sucked from a jar with a giant syringe. I'm not sure if thinking about this alternate reality felt good or bad. 

As I wiped my face and stared into the middle-distance, the little one in the bath said she was getting cold. I closed my laptop and tried to shift my thoughts to the present, even though the present is informed by the past -- by Riley's life, his death, and grief. Every single day. I pulled her from the water and toweled her off. Then I got her dressed in pajamas and went to the bedroom she shares with Riley's things. Afterward, I picked up the letter and put it into the folder with our tax documents.

Grief and milestones

Photo credit: Jina Morgese, Ember & Earth

I hemmed and hawed. It would be our 10th wedding anniversary, then a few weeks later, it would be my 50th birthday. These are big milestones. Weighted. They are time markers. They are accomplishments. They are heavy with grief. I wanted to honor them, though. 

Attorney Friend, who now lives near the west coast of Florida, had offered to keep the four-year-old for three nights while we acknowledged these days, just the two of us. We jumped at the opportunity. We had only had one night away from the four-year-old since she was born. It was the night after a bear broke into our vacation rental. Our college-aged daughter was fortuitously visiting, so we left the small one with the big one and we drove away. When we got there, we screwed plywood over a smashed front door, cleaned up bear poop, made nail boards to deter other bears from getting too close to our house, and drove soiled rugs to the dump so that our tenants could move back in. 

So we would be in Florida. We would have an alternate reality for three nights. One in which we had childless lives. I rented a hotel room on the water in Sarasota, a short walk from St. Armands Circle. There would be warm water to swim in, white sandy beaches to walk along, and tables at restaurants to eat at that didn’t include a high chair and a small voice singing “Let it Go.” There would also be cocktails and dresses and late nights staring at the stars and into each other’s eyes. 

And I wanted to have our photos taken to commemorate it all. When I told Attorney Friend my plan, I couldn’t articulate why I wanted photos. “Why wouldn’t you want them?” she asked, as if the answer was obvious.

At the time, it wasn’t obvious for me. It was just a feeling. Or I just hadn’t found the words to articulate it. But I wanted framed photos on the wall that documented our love, the years we’ve held each other through joy and death and birth and graduations.

Photos have been difficult since Riley died. So many things have been difficult. The idea of smiling was difficult. The idea of smiling so that someone could capture it in a photo felt paralyzing. How could I smile? How could I feel joyful? I certainly wouldn’t want anyone to see the smile or to see the joyful photos because I wouldn’t want anyone to think that I’m done grieving. I’ll never be done grieving. And if your child hasn’t died, what I’m saying might be a difficult concept to grasp.  

But I still wanted that photo. I realized I wanted it because I want to make a conscious effort to honor the good as well as the pain. The pain is easy. The good is much more challenging, though not less deserving. I would need to let my guard down, though. And I figured a photo of the two of us would be easier than a family photo of our lopsided family where someone will always be missing.

I sent an email to a Sarasota-based photographer. It said, “Our 10th wedding anniversary was 8/3 and I'm turning 50 on 9/15. I have shied away from photos since our 11-year-old son died in 2014. That said, I'm hoping to be able to relax and just celebrate our relationship. And I'm hoping you can capture the love and not the pain that is part of who we are.”

I had to share about Riley because I need to live authentically. To not share it would be to deny all of the grief that now lives in my DNA. And it would be easier if she knew. I wouldn’t need to pretend that I wasn’t struggling. Because I would be, especially if she didn’t know. And in the moment, it would be harder to explain the tears that are always just below the surface.

“It would be an honor to photograph you and your husband, and I thank you for sharing your story with me,” she replied. 

And as soon as I confirmed the date and time of our photo shoot, I began questioning the decision. Anxiety built and I started worrying about dumb stuff, like what I would wear and if I’d look old. 

When the day of the photo shoot finally arrived, we’d already been at our hotel for two nights. We’d had time to swim and nap and see the Barbie movie. That day, we went to lunch and on our way back, we stopped at the Daiquiri Deck and had afternoon slushies. I had two – it was happy hour after all – and it was coffee-flavored and tasted like boozy coffee ice cream. The bartender gave everyone jello shots. I pushed mine to Adam while a football game blasted on the large-screen TV over the bar. 

On our tipsy walk back to the hotel, I dragged my feet through the surf and stumbled and giggled and slurred my words. As Adam napped, I went to the ocean knowing this was my last chance for an afternoon swim. As I watched hundreds of silver fish dart around my legs, I did some math and realized that it must be getting close to her arrival. When I got back to our hotel room, I only had 30 minutes to shower, dry and style my hair, do my makeup. It was probably just as well because I didn’t have time to fret or second-guess my outfit.

When we got to the lobby, she smiled at us. “You guys look amazing,” she said, which I imagine she says to all of her clients. 

“Thank you for coming. I’m really nervous,” I said as my voice broke. 

“It’s going to be okay. We’re going to focus on the love between the two of you,” she said.

“It’s just that pictures are hard for me since my son died,” I said, as I waved my hands in front of my eyes so that tears wouldn’t smear my mascara.

And for the next 40 minutes, she had us hold hands and kiss and walk and stand in the water. Adam spun me around and dipped me and I wanted to weep at the enormous love I feel for him. He has loved me on all of the days. And he “knows that nothing – not dancing or laughing or drinking or orgasms – will change grief. A temporary reprieve is just temporary. Grief is always coursing through my veins. Always will be.”

At the same time, so is love. And now I have these beautiful photos documenting it.

Grief and effort

A child's hand pushed the bathroom door closed -- loudly. I feel this from the other side of the wall and I am awake. This is my alarm seven days a week. As we approach the summer solstice, this alarm is earlier and earlier each day. I roll toward the clock and know it will be earlier than I want it to be. My eyes open. It is 6:17 am. Chirping eases its way through the slider and into my ears. My lids fall shut, I roll onto my side, then pull the duvet up enough to cover my eyes and side of my head.

As I wait, an image appears in my head. I’m running. 

I've been running in my dreams. Fast. Long distances. Marathons. Legs effortlessly gliding across concrete and payment. I can feel the ease of moving as my legs stretch from front to back and my arms swing in sync. The breeze flows through my hair and flaps the sculpted edge of my black shorts. The effortlessness of it is what I keep going back to. 

Because my dream running is nothing like my actual running. In real life, I lumber. Trot. My arms go numb as I unconsciously bend them too close to my torso and reduce circulation. It requires tremendous willpower, this running. Especially when pushing a stroller. But I can run. One step, one block, then another and another. It's powerful to go four miles, six miles. For Riley’s birthday this year, my husband and I ran 11.5 kilometers – one for each of Riley’s 11.5 years. I always love the run after it's done. But never during. It’s just hard. Despite that, I vow that I will run 11.5 miles in honor of his 21st birthday next year.

It will be very hard. Everything has been hard. Since Riley died. 

There is another clunk as the child closes the door to the bedroom that she shares with Riley’s things – his stuffed penguins and picture books and lego creations and clothing. My finger presses the power button on the monitor and it comes to life just as she turns on her overhead light. I see a striped zebra, two pink and white unicorns, a cat pillow, Riley’s green dotted duvet. I cannot see her, but I can hear the turning of library book pages. 

Are things as hard as they were last year, two years ago, five years ago? As I wonder, I am transported into our family minivan on our way home from the grief group we took Riley’s siblings to. In the group, they draw pictures of Riley, write messages to him and put them in bottles, talk to other children who also lost siblings or parents or other important people in their lives. They also play dress up and laugh and eat cookies. I ask them how grief feels for them. “Sad, sometimes,” they say. 

“For me, it feels like I’m wearing a heavy cape. It’s hard to move. It’s hard to do anything. Because everything feels so heavy,” I say.

But now I’m running effortlessly in my dreams. I’m not sure if I'm running away from something or towards something. Maybe it's neither.

Just then, the handle on my bedroom door rattles, then opens. She steps across the threshold and pushes the door closed. “Good morning,” she whispers, as her hand gently cups my face. My eyes open. She’s wearing a pink party dress and holding one of the unicorns from her bed. “I was talking to Riley and he said he would like me to play with his marbles.” I think of the coveted tin of marbles he bought with his allowance shortly before going to the hospital that last time.

“We will, sweetheart,” I say, as she wanders over to dad’s side of the bed. 

I can’t help but wonder if my subconscious is pointing out that I can move again, that I am moving. Volunteering at my daughter’s preschool, coaching writers, editing manuscripts, sending queries to agents, applying for jobs. Even though I didn’t think it was possible, I am living and grieving, grieving and living. I would not say it’s effortless. But I’m doing much more than I ever thought I’d be capable of. I’ll probably grapple with this for a long, long time. I squeeze my eyes and wetness drips onto the pillow. Then I throw the duvet back and push myself out of bed.

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 meaning

Riley's death took eleven years, but we saw it and feared it and anticipated it from the moment he was diagnosed as a newborn. His eighth anniversary is October 20, and in trying to understand the passage of eight years without him, I had a thought the other night when I was driving. I wondered if all the joy Riley felt in life – despite multiple heart surgeries and long hospitalizations – was his attempt to teach me. Perhaps he was showing me that if he could feel joy despite what he'd been through, then perhaps I could eventually feel joy despite what happened to him.

The idea that I could live a joyful life feels improbable, even though if you spend time with me, I will let my guard down from time to time and smile with my children or my husband or a friend. People have often told me that Riley would want me to be happy. There have been times when I”ve wanted to punch those people in the face. How could they possibly know what Riley wants? I now realize that those kinds of comments are that person wanting me to be happier because it will make my grief easier for them. You can’t move someone along in grief. Everything in grief has to be innate. You cannot make someone feel something other than what they are feeling. So maybe Riley would want me to be happy, and maybe he would like that I’m still so broken all these years later. Maybe he would find my brokenness refreshing in a world desperate for Hollywood endings.

So my thought is a work in progress. It just seems messed up that the 11-year-old boy would need to be the teacher. And because humans are meaning-makers, I’ve been trying to make my thought mean something. But it's equally possible that it means nothing. Our therapist said time and again that our minds are full of thoughts, many of which are not true. This might be one of those examples. Riley’s life and death wasn’t a lesson, even though I went to a "healer" at one point who told me that Riley and I made an agreement to have this life experience together. She also told me that his final surgery failed because there was nothing else for him to learn from this life. 

So for now, I'll think of his laugh and his loud voice, his love of garlic and Tabasco, his floppy hair, his love of baseball and reading and maps. I will think about how he hummed while doing his math homework and how he really wanted to learn to play the viola when he came home from the hospital. I will also think of how it will start raining soon and everything will turn green. And I will think about how he would love that. The rest of it, I'll just keep thinking about. 

Grief and making space

Sand wedged itself into the spaces between my socks and my shoes as we walked along the path near Secret Beach. Sage held the leash and led the dog to the place where we play fetch as sand seeped into her shoes as well. “Can we go in the lake today?” she asked.

The air had turned cool and my daughter didn’t quite understand why I wouldn’t let her take her shoes off and run into the blue water like we had done countless times over the summer. As we walked along the beach, we noticed sticks and pinecones and shells grouped together in collages at the lake’s edges. My daughter reached for pieces of the abandoned artwork. I redirected her, asking her to find her own sticks for her own art. 

She galloped off, looking for treasures to pile and sort and push into the sand. Twigs and bark and tiny shells that we’d pretended were soup bowls and plates and forks became the foundation for our project. A row of sticks here, a group of pinecones there. She continued to gather and add to our project as I added my own touches. It morphed into a heart – most things do. One of the larger pieces of bark became a tool to flatten the sand. From there, I wrote “FOREVER RILEY” around the outside. 

“What does it say, mom?” she asked. I felt a small amount of shame as I told her what I’d written. It was just the two of us. We were collecting bits of nature and making art together, and yet, Riley was there. He’s always there. 

After I told what it said, she responded, “I’m going to write FRANKLIN over here.” She proceeded to drag her own branch through the sand to include the scratchings of one of her imaginary friend’s names.

Trying to parent my dead child and my living child is like trying to unravel strings of tangled Christmas lights. These two humans are connected and yet they are separate. In that moment, I was reminded of a piece that Jayson Greene did for the New York Times in 2020. It was about introducing his son Harrison to his beloved daughter Greta who had died 15 months before he was born. It was about imagining the language he would need to explain to his son why he has a sister who isn’t here to play with. It was about wondering when the question would come up. “We’re on his timeline,” he said. I'm on Sage's as well. 

I'm also in her reality. This childhood is hers, too, even if an 11-year-old boy is also permanently lodged into my reality. I realized that next time we play at the beach and make art, I need to write SAGE in the sand. I need to let some moments be just about her, about us. She will grow up in Riley’s shadow no matter what. But I need to make an effort to let the sun shine just for her some of the time. 

Grief and an unexpected find

As I silenced the Dyson, I looked toward the canister layered with gray – dust, hair, topped with a fine layer of fluff. There were also a few colorful tiny beads that had fallen into the carpet fibers years ago. They were now mixed with remnants of what I would empty into the trash. But as I looked at the pile of gray, my mind knew what was also there. Riley. Pieces of my 11-year-old boy’s skin, hair, and probably a few nail clippings that had fallen to the floor. 

You see, I moved his bed today. It was the first time I moved it since we put it in his bedroom nine years ago. And I had not vacuumed underneath it since then. For the last three-and-a-half years, he has been sharing a room with his baby sister. She’s running out of room in her crib at the end of his bed, and soon she’ll be using his bed with the duvet patterned with green circles. In preparation for the change, the room needed cleaning. HIs backpack is still under his desk. His water bottle is still tucked inside with the remains of the water he took to school on his last day of school. His daily calendar on his side table still says October 8, 2014. 

After he died, I left everything in its place, yet over the years, his room has also become a dumping ground for all of the things that I have collected, for all of the things people have given us. There is a giant green paper lantern from his memorial at the elementary school he attended for five years. There is a jar of post-it notes with words of kindness written on them from his classmates from the first anniversary of his death. There are rolled up banners in the closet and t-shirts hanging on the walls from the charity runs that his classmates organized each year until they graduated from high school. 

His bed still has the sheets that he slept on the last night he slept in this house. His pillow case has not been washed. His beloved stuffed penguins wait for his return, their black heads resting on his pillow. 

As I moved the bed frame, I was confronted with the piles of his art from school that I’d hoarded over the years, yet never hung on the walls to enjoy. Each precious piece made during school art classes encased in folders made from large pieces of construction paper. They are all priceless, irreplaceable. Part of me doesn’t want to open those folders because once I do, I will have seen every last piece of art that he made. It’s possible that there won’t be any other opportunities to see things he’s made that I’ve never seen before. 

The room was left in disarray when I went to pick the three year old up from preschool. Seeing all of Riley’s stuffed animals in a big pile on the floor, she said, “Move all of this stuff out of here.” I hadn’t expected that request. “No, I’m just cleaning. They will go back on the bed once it’s made again.” She asked why. “Because you’re still sharing a room with Riley and these are his things.”

She was satisfied with my reply as I closed the door for her nap time. The Dyson is still full of dust, though, and I like imagining the physicalness of Riley. His hand in mine. His arms around me and mine around his torso. His weight in my lap. The shape of his ears, the boney boy knees, his nibbled cuticles. Along with a few hair clippings, some baby teeth, and his ashes, there isn’t anything else. LIke the art that I’m apprehensive about looking at, knowing there won’t be more in the future, I’m apprehensive about emptying the dust into the trash. It feels like a last gift. Or an unexpected hello from my boy. 

I will empty the canister when she wakes. In the meantime, I will open the pouch with his hair in it, brush it against my cheek, and try to remember how it felt all those years ago when I hugged him, his mop in my face and in my eyes. Exactly where it should be, even though if he were still alive today, it would likely be my hair in his face and my cheek on his chest as the boy would have grown into a man.

Grief and a success

    After several failed attempts, I finally ended up walking with Auditor Friend. Her daughter was one of Riley’s classmates starting back in kindergarten, and her family has donated copious amounts of time planning and organizing the Riley Run each year. Aside from hashing out details for the annual charity runs in her kitchen a few times, I barely knew this woman prior to our walk. I was looking forward to knowing her more.

    We marched from her house along familiar streets in our neighborhood. They were streets that held the weight of hundreds of runners wearing green in honor of Riley over the years. We talked about her daughter who would soon be heading to college. We talked about what it was like to see Riley’s peers heading to college. We talked about lots of other things, like her son, where she grew up, how she met her husband, what she dreams about doing after her youngest launches in a few years. Then we circled back to life in Tahoe. I told her the story of my neighbors who invited us to their party. I told her about how I wait for people to hurt me, knowing they usually do.

    She listened patiently, then after a few moments, “Would it be okay if I offered a suggestion.” I said yes. “Is there a way you can tell people ahead of time, so that you aren’t waiting for them to hurt you?” she asked cautiously.

    For so many years, it was hard to even say out loud that my son had died. The words like broken glass in my mouth, I said it only when it was required. The thought of saying it preemptively felt like putting the glass in my mouth.

    Or would it be?

    Shortly after that walk, in an attempt to meet my 10th-grader’s friend’s moms, I invited two strangers over for sangria on a Friday night when my son was inviting his friends over for a movie. For safety, I also invited my son’s stepmom, whom I adore and another friend, who is another mom in this circle.

    I decided to try out Auditor Friend’s suggestion.

    “I have sweaty palms as draft this message, but it’s important for me to let you know ahead of time that my son Riley, Carter’s older brother, died when he was 11. Carter was 8 at the time. I don’t know who knows this and who doesn’t know this, and when we talk about our families on Friday, I will talk about Riley. And I might cry. I’m telling you this so that it’s not a surprise if you didn’t know.

    This is my first attempt to temper the social anxiety that has come alongside grief by being proactive. For nearly seven years, I’ve silently panicked while waiting for it to inevitably come up. But after talking with a friend the other week, she helped me come up with this plan to see if this is a better approach. Sorry for the long explanation and for understanding. I hope I haven’t scared you off.”

    And I didn’t scare her off. Rather, it opened the door for a calming exchange about Riley. “I know about Riley, and I think of him whenever I walk by his memorial on Pulgas Ridge. I just wasn’t sure if it was appropriate to bring him up. I am glad you did and are, and by all means, cry on Friday! I’ll be right there with you.”

    When she arrived that Friday night, I gave her a big hug. She hugged me back and gave me flowers. It was better than I had hoped. I go back to what my stepdaughter told me a few years ago… “There are probably a lot more safe people out there, if you’d only give them the chance.” Now I just need a crystal ball to know which are which. 
 

Grief and innocent neighbors

For most of the past year, we’ve been living in Tahoe. We ran away just like so many others when covid sent us all inside, making it socially acceptable to stay away from people. We’ve been wanting to run away since Riley died more than seven years ago.

    As hot summer nights turned into cooler autumn breezes, there was an invitation from our Tahoe neighbor. We'd seen him in the yard every so often. We'd exchange niceties. And now there was an invitation. He was throwing a surprise birthday party for a friend. We didn’t know the friend, we barely knew the neighbor. But on the night of the party, we took a giant jug of sangria and a bag full of ice cubes in the shape of teeth to their backyard which connects with our yard. There were chips and salsa. A net was set up in the yard. Other neighbors were playing badminton. There was another toddler with a truck. More guests appeared, more sangria was poured, and the tightening in my chest began. Then the guest of honor was surprised with a dozen people he didn’t know.

    Eventually it was the baby’s bedtime. I volunteered to take her home and get her into bed. I appreciated the break – being in a group is like being surrounded by fire because someone would eventually ask how many kids we have. It seems to be such an innocent question. And our neighbors had clearly seen the teenagers coming and going. Just never all at once in a way that would make counting them up easy. Not that you could count up how many kids we have just by looking at the ones standing and breathing in front of you. My family isn’t that straightforward.

    After she was settled, I went back to the party and sat next to my husband. The group was smaller now. The guest of honor, his sister, our neighbors. I pushed my hands into my legs that rumbled with anticipation, trying to lessen the rumbling. I swallowed more gulps of sangria. My husband rubbed my back, then looped his arm through mine. I waited for this group of innocent people to hurt me. They always do. Not intentionally, but it hurts just the same.

    “So, how many kids do you have over there?” he asked. And there it was.

    I went with the line I’d learned in my bereaved parent support group. “Well, for most people, that’s an easy question, but in my family, it’s more complicated,” I stumbled. “We have four big kids, but my 11-year-old son died seven years ago. So we have three living kids, plus the baby,” I managed as I wiped tears from my cheeks.

    Wide eyes stared, unsure of what to say when confronted with grief. I’m always good at ruining fun with my reality. Then after a moment, our neighbor broke the silence with, “So you guys want some more sangria?” Everyone said yes, except me. I stayed for another few minutes before excusing myself to be closer to the baby. Adam decided to join me. We said goodnight and walked back home. And just like that, I didn't ever want to see them again.

Grief and the woman on the phone

My email signature

There was a woman’s voice on the other end of the call. Far away from Lake Tahoe, somewhere in Florida. I figured our connection was a mistake of the internet as I looked for a contractor to replace some doors at our house. But she was part of the call center, probably working from home during the pandemic. She was helpful and offered to set up an appointment for someone to come take a look, take some measurements. The appointment was set, then after talking it over with my husband, we changed our minds. We wanted a local shop with a showroom, where we could go look at doors and feel the difference between wood and fiberglass. I emailed to let her know that I called the Sacramento office and canceled. That would have been the end of it, but she followed up.

“On another note; I noticed the bottom of your email.

My heart sank.
I am so, so sorry for your loss.
My heart goes out to you.
No parent should ever lose a child.

My prayers go out to you and your family.
May little Riley rest in peace until you meet again.”

This woman in Florida is the first person to ever respond or even mention the words that finish every single email that I have sent for more than six years. The first time. In more than six years. I've often wondered if the words were really attached to my messages and I've looked at my sent mail to verify its existence. And there it is. Every. Single. Time.

As time goes by there are fewer and fewer times when people ask about him and fewer and fewer opportunities for me to talk about him. I responded with a thank you. I thanked her for bringing him into the moment for me. I thanked her for taking a chance. I told her that Riley loved maps and baseball and Tabasco. He loved telling jokes, the color green, and sitting in my lap. I told her that he was the love of my life. And while her email brought fresh tears to my eyes, I assured her that her message did not make me sad.

Silence is what hurts. Acknowledgement is what heals. A bereaved parent needs a lot of acknowledgement. We need to hear our children's names said aloud. Or typed in an email. This faraway woman helped my broken heart feel slightly less broken. Her note definitely did not make me sad or remind me that Riley has died. I'm acutely aware of his death and absence practically every minute of every day. Rather, her mentioning him made him alive. And I thanked her for her the gift.