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 social events

Looking for you in nature

All of the voices inside my head were arguing. They were shouting over each other, angry at all of the merriment around me. Much of it was about who is safe and who isn’t safe and what is allowed and what isn’t allowed now that you’re dead. There are so many rules and it’s so confusing that it's hard to keep track. And sometimes I forget the rules, which prompts the angry voices to shout and finger point and wear steel-toed boots just in case they need to kick someone. In all their rage, venom drips from the tongues, words too vile to include here. That anger was directed at everyone -- the people I live with, the acquaintances I saw at the park on Friday night. When the voices are shouting like that, I need to close my eyes, hoping to see your face, or stare into the distance towards nature.

I laid my head back on the blanket at the park and my vision grabbed a branch of leaves. The school jazz band concert at the park had finished and people were just milling about, chatting and visiting and laughing because it was a lovely night, and well, why not? Facing the sky, I saw a cluster of leaves that looked like a heart, if I wanted it to look like a heart, anyway. I always want everything to look like a heart because I know it means you are nearby, that you made it look like a heart so that I would know you are nearby. That leaf heart swayed with the breeze, thumping with the beat of my broken heart. I’m with you. I see you. I know you’re here, it said.

I had not been to a concert in the park since before you died. Although we did watch your younger brother sing a couple of songs with his glee group not long after you died at the same park, on the same stage. There was no blanket or picnic that time, though, and we huddled near the edge of the crowd ready to depart as soon as you were done. This was different. Very different.

You see, on Friday, I packed a picnic and made sangria. I spread our blanket at the park hours before the concert began. I left camping chairs, too. Then we went with our picnic and our sangria and the guacamole that I made. We brought the dog and it was so exciting with the people and the music and the sun warming our backs. And being a school event, there were lots of familiar faces. Other people had also set up their blankets hours ahead of time, and I had joked (yes, joked) with them that we’d be neighbors. And I waved at them and even went and said hello when I recognized the neighbor’s daughter from your brother’s second grade class.

Then it was all too much. Too much sangria, too much talking, too much of you not being there. How am I supposed to talk and eat guacamole and talk to the people on the adjacent blanket when you are not here, when you’re never going to be here? When they don’t know that you’re dead. I tried to recover by staring at the leaves, but everyone was laughing and eating ice cream when I just kept thinking about how you were dead and I was pretty sure that no one else was thinking about you being dead. I’m always thinking about how you’re dead and how you’ll never, ever, ever not be dead. That’s when the shouting in my head started. It’s so hard when I’m the only one remembering that you’re dead. It’s easier when other people remember and talk about you. Then it’s not all on me because that’s when it’s too much.

So I stared at the heart-shaped cluster of leaves and tried to make everyone think about you, but they kept laughing and someone who was talking with the family on the blanket next to us was talking about an interview that they went on. And someone at the end of our blanket was talking about what kind of camera they have. And they were licking their ice cream like it was the most normal evening in the world. This is great, we should do it again, my sweet, well-meaning husband said at one point.

The sangria made everything cloudy. Maybe I shouldn’t have had the sangria and maybe I should have eaten the caprese sandwich that I had made for myself because you like caprese sandwiches. I should have eaten more than chips and guacamole. And all of a sudden I was so angry at everyone. The neighbors who talked about their interview. My kids at the end of the blanket talking about cameras and ice cream. My good-natured husband who was having a good time and wondered out loud if we should maybe do this again another time when they have the regular concerts in the park. It was just too much. Probably the most socializing that I have done since you died. Too much. I so often feel like an observer in my own world, watching it unfold around me, unable to move into it, be a part of it. It’s like there are two different planes: I exist in one, the rest of the world exists in the other and we're separated by plexiglass.

Finally the shouting in my head was too much. I stood up abruptly and wavered a bit. I picked up all of the camping chairs and a picnic blanket that we weren’t sitting on and took them back to the car across the street. I put them in the trunk and sat in the driver’s seat for a bit, enjoying the warmth of the air toasted by the sun, trying to figure out what to do next. Husband came over with the cooler filled with all of the uneaten veggies and dip and watermelon and the caprese sandwich I should have eaten. I told him I was angry at everyone. Everyone, he asked? Yes, everyone, I said, and told him that I wanted to walk home.

So I did. When I got home, I watered the plants in the garden and then went into your room and laid under your desk and never told anyone I was there. And I stayed with you until everyone was in bed.

Grief and reality

#CentralTeamRiley in Lassen National Park

This is one of those nights when I cannot remember what is real. When I crouch on the ground outside the garage and search for my son’s familiar face among the knots on the slats of wood on the fence. When I cannot remember why my husband continues to love me, even when I’m not a nice wife or friend or housemate. When one of his bear hugs cannot temper down the confusion and grief that hangs from my limbs like bricks.

This is one of those nights when I deserve to be all alone, abandoned. When I imagine my husband finally realizes that I’m not worth the effort. When I imagine he sees how hopeless I am, when he finally decides that I’m not trying hard enough to be a part of our family. When I escape to the shower to avoid watching a movie with them because sitting next to them, while they have a good time is too painful. Even though that’s exactly what Riley would be doing if he were here.

This is one of those nights when I question how I can possibly live the rest of my life without him. When the idea of being around people in any social situation that is not centered around grief is betraying his death and the horrors that he endured in the last days of his life. When I question my loved ones when they want to be with their friends in social situations that have nothing to do with grief. When they find a way to live without Riley.

This is one of those nights when I cannot remember who my safe people are. When I imagine what trades I could make to bring him back. When I cannot remember why anyone continues to love me, or want my company, even when I shut them out, don’t call them back, and am absent from their weddings, their birthday parties, their fundraising events, their going away parties.

This is one of those nights when I’m so confused because I’m so lonely, yet I don’t know how to let people be close to me. Because I’m waiting for them to leave me, just like I knew they would when they got sick of all this grieving. When they know that I know that they’ve wanted to lure me away from grief so that I leave Riley behind and get on with the business of being the old Suzanne, the goofy girl who laughed. The fun one. The one who was complimented for being so good at helping people feel included and comfortable in social situations. The one whose job it was to boost the emotional status of everyone in the room.

This is one of those nights when my body hurts from grief. It physically aches from the loss of my 11-year-old son. It’s weighted and sharp, and my lungs cannot get enough air. The pumping of my heart is strained, as if it cannot possibly continue on it’s own. As if it needs someone’s hands squeezing it so that it can take a break from all that responsibility of keeping me alive, even though I would reject any offers of help because I don’t want relief. I think of ways to hurt myself.

This is one of those nights when I hope it gets worse. Because I don’t want to get better. I don’t want to get better at living without my son. I want to suffer for the rest of my life because anything less than suffering means that I’m adapting to his death.

This is one of those nights when I know that while I understand things on an intellectual level, I’m not interested in understanding them on an emotional level. When I understand that my son’s death is permanent, but still hope that I can solve the riddle about out what when wrong so that I can undo his death. When I know that his face and his essence is not actually hidden in a wood knot on the fence, but I continue to stare at it anyway while asking him to forgive me again and again.

Grief and looking

The wall between me and you...

The afternoon was a mishmash of things to do. Thirty seven items returned to the library. Two checks deposited at the bank. Two certified letters retrieved from the post office. Empty shopping bags piled at my feet waited to be weighted with carrots and milk and apples and edamame.

It was just after 3 pm, not long after the last bell launched children from the nearby middle school like a voice through a megaphone. My team usually walks home, but we decided to pick them up before heading to the grocery store so that they didn’t arrive at an empty, locked house. As we turned toward the school, there was a storm of students in every direction. They walked, rode skateboards or bikes, and carried instruments in bulky, oddly-shaped, black plastic cases.

Backpack straps pushed into shoulders and rolled along bumpy sidewalks. Crossing guards blew whistles, waved cars through an intersection, and launched “stop” signs into the air to pause traffic for impatient kids. Cars lined the block near the park -- a popular after-school meeting spot. Kids waited, parents talked, toddlers swung and climbed and slid. Unseasonably cool air reddened cheeks and forced arms into jackets that had hung in closets since the beginning of the year. 

From the passenger seat in my family’s dinged minivan, my eyes searched and my ears listened for the familiar faces and voices of the women I used chat with while I waited for my own crew. In that moment, I knew that somewhere in the last thirteen months, grief had shifted. While much is the same as it was a year ago -- I am not any less sad, for example -- things are also different. The fact that I even was looking beyond the brim of my cap was a change. I could not do that last year. I could not be near school, especially at pick-up. It was as if my fear of other parents and living, healthy children made me afraid of anything and everything. Seeing them doing their normal things was like a paralyzing storm inside of me. My limbs were like downed trees, immobile and broken. My mind was like a clogged gutter, mucky and stuck. 

As we looked for the kids, a longing rose within as I missed the time when I was among the friendly mothers who met their children at the park after school. There are so many things I miss...

After noticing that slight internal shift, that desire to see the community of people I used to move through and among, I considered the errands I had just participated in. They were nothing out of the ordinary. From store to store, my feet carried me. My arms reached for gallons of milk. My mind made the to-do list. But I was not terrified. After Riley died, the world seemed like it was made of make-believe. I felt sidewalks would crumble under my shoes; I feared walkways were obstructed with sheets of glass; walls wobbled; branches angled like arrows aimed at my heart. Moving like a wounded animal, I cowered. I hid behind shelves and scoped safe pathways between myself and the cereal aisle. With arms wrapped around my torso, protecting my weeping organs, I scurried with eyes down. Like a raccoon, I avoided people. Like a deer, I froze as if to be invisible. I imagined people judged me when they saw me, that they believed that it was my fault, that I had killed my son. I imagined they were thinking: Why did you put him in the hospital? Why did you grow him wrong? How could you be out shopping or getting your nails done? 

Hats still cover my forehead. A spasm still jolts my limbs when a familiar figure is spotted. It’s often (but not always) followed by a pirouette that launches me to a different part of the shop. But like glancing around for familiar parents at the park, I realized I look up a little more often in the first place. 

Grief and laughter

Riley was awesome at being goofy, as seen here.

The other day, I sat on the sofa in my yard with a half-eaten salad on my lap. The sun was shining and the broad leaves on the giant Sycamore were protecting me from the 80-degree heat. My husband sat by my side with his own half-eaten salad. We talked about C’s 9th birthday party that was held at our house a few days earlier. A few leftover Mylar balloons still swayed in the background; the bucket with uneaten fruit from our bobbing-for-apples game waited to be emptied; vases with drooping sunflowers and lilies reminded me of how I spruced up the garden for that day. If everything looked pretty, then I would get through it, I remembered thinking. I could show up in a way I couldn't with my husband's birthday. I had to.

We had swept and scrubbed and placed flowers. An extra strong Moscow Mule softened the anxiety I felt around talking to parents as they dropped off their kids. Orchestrating a water balloon toss and a game of “bobbing for apples” for twelve kids kept my grieving mind occupied during the party. And I did get through it, even if the crying jags pushed me off balance every so often. Riley wasn’t there. Being the younger brother, C has never had a birthday without him. Now he’ll never have another birthday with him. None of us will. In all the fanfare, I forgot to have the kids decorate a flag in honor of Riley.

As my husband and I ate our salads in the shade in our backyard, in addition to talking about C’s birthday, we also talked about wanting to paint the house, how the deck needs to be refinished, and in which order those things should happen. It was all very ordinary chatting about this and that. And then my husband said something amusing. It was a line I’ve heard before and one I will hear countless times during our years together. I cannot even remember what it was that he said. But laughter ripped through me. Heaving, can’t-breathe-laughter. My body’s response was far grander than necessary. It shook me, jolted me, and then slapped me across the face--it was that throbbing part of grief. The heat of regret bubbled up. There was anger. And annoyance, too, for allowing some other emotion to penetrate the wall I’ve built.

I used my napkin to absorb the regret that leaked from my eyes. After that, my husband held me for a while. I know people want me to laugh and feel better, but I don’t want to laugh or feel better. Not yet anyway. Maybe I will someday--at least that’s what people keep telling me. For now, my soot-colored world is where I’m meant to be. And the throbbing, like the pulsing of the umbilical cord that once connected us, is my constant companion as I navigate this world without him.

Grief and blank spaces

The "H" Word

Saggy balloons hang from the wall outside my bedroom door. They are attached to a handmade sign declaring that thing you’re supposed to say to people on the anniversary of their birth that includes the “H” word. It was my husband’s birthday last Thursday and with great enthusiasm the children scurried around the house before they went to school that morning. They put gifts in bags and stuffed colorful tissue paper on top. They blew up balloons, made that sign, and taped those things carefully to the wall as they wondered what kind of cake we might eat later that day. I didn’t tell them that there wouldn’t be any cake.

But I was wrong. Last Thursday was also the final night of our family grief group, and at the end of the evening, there was a box of cookies, a plate of deviled eggs, and a cake. They were thrilled. Different activities beforehand made us end up with two cars there. The kids all piled into my husband’s Jeep and I drove home solo with Talyor Swift’s addictive love songs keeping me company. I was spared the children’s singing, the laughing, the merriment.

It was after their regular bedtime when we got home. Yet, the presents hadn’t been opened. As we sat on the ground near the sign, the kids presented each gift and Husband received it with fanfare. “We sang Happy Birthday all the way home!” they said. From there, they burst into several variations of the song, substituting silly words for the regular ones, making them fall all over each other with delight. Colorful bags and a rainbow of tissue paper covered the beige carpet. “How is this a happy day?” I wanted to shout at them, to temper their enthusiasm and jubilance. “Riley isn’t here. No days are happy days.”

But they are children and they don’t know about grown-up feelings. They lost their brother, they don’t want to lose Christmas and birthdays, too. I kept inching myself away from their sounds. I wanted it to stop. This line of being with the living and staying with Grief is a balance I haven’t figured out. I could feel Grief’s open arms waiting for me a few feet behind in the comforts of bed. It loves me, comforts me, feels safe. The feelings are mutual.

Husband shuffled the kids off to bed and I plowed my face into pillows and refused to speak. I transformed from Present Buying Wife into Bitch Wife, angry that Husband had a birthday in the first place. Angry that his family sent birthday cards. Angry that he called them and laughed and joked about who-knows-what. I could still picture him jumping around the kitchen like one of the kids repeating, “It’s my birthday. It’s my birthday.” In between each line, I hear: Riley died. Riley died. Riley died. Riley died. Riley died. Riley died. That’s what I always hear in the blank spaces.

I tried to explain the other day what the world is like to me. It goes something like this:

Husband: “Do we need milk?”

Wife: Riley died. Riley died. Riley died. “I’ll look.” Riley died. Riley died. Riley died. “Yes, soy milk and regular milk.” Riley died. Riley died. Riley died.

Husband: “Ok, I can stop at Trader Joe's after I get the kids from the Youth Center.”

Wife: Riley died. Riley died. Riley died. “Ok, will you also pick up some fruit for lunches? And cream cheese, too?” Riley died. Riley died. Riley died. Riley died. Riley died. Riley died.

Husband: “Absolutely.”

Wife: Riley died. Riley died. Riley died. Riley died. Riley died. Riley died. Riley died. Riley died. Riley died. Riley died. Riley died. Riley died. Riley died. Riley died. Riley died…

With my head pressed into the pillow and the blanket over my head, I refused to acknowledge the birthday boy for the rest of the night. I couldn’t look at the 44-year-old version of my husband. I don’t know him. My 43-year-year old husband cleans Riley’s glasses and gets Riley to roll his eyes. He carries Riley to the treehouse when it’s too hard for Riley to schlep up the hill for the kids' overnight in the yard. He reads the latest Rick Riordan to him as he lies in the hospital bed. He tussles his blond hair before burying his face into the unkempt locks to deliver a kiss. This 44-year-old husband won’t do those things.

The lights go off and Husband climbs into bed beside me, scoops me into his arms anyway. I don’t resist, but I don’t sink into him either. Once I feel him drift into sleep, I get out of bed and wrap my housecoat around my sad body. With flashlights, I fumble behind the house looking for the dull ax. From there, I begin whacking what used to be the “Gratitude Tree” in my front yard. “I hate you Gratitude Tree.” Whack. “Why did you have to die?” Whack. “I’m so sorry.” Whack. “Don’t be mad because I’m chopping down this tree.” Whack. “Please forgive me.” Whack. “Fall you fucking tree.” Whack. For nearly an hour I hack at it.

When it’s finally severed, I sat in my sweat-soaked robe on the brick wall and watched the full moon rise over the neighbors’ houses. From there, I crawled back into bed; I was finally able to sink into my husband, let him hold me, comfort me. I looked forward to admiring my handiwork in the days to come. But the next day, the gardeners removed the tree’s trunk and downed branches as well as the stump. Where it used to stand is just a clean, blank spot in the lawn covered with stones. Three days later, my right forearm and elbow swollen to almost double the size of my left arm, I wonder if it was worth it.

Grief and fighting

The soles of my hiking shoes crunched along the composite as I sauntered down the long, empty trail taking me from here to there. Inching along with the fog hovering over my shoulder like an enthusiastic editor, I willed someone to come out from behind the tangled poison oak and manzanita to mess with me.

Green worry stone

Nothing scares me. Not that I was anywhere scary. Pulgas Ridge is a county open space preserve sandwiched between sleepy San Carlos and Redwood City. Years ago, it was home to a tuberculosis sanitarium and skeletal remains in the shape of cement stairs are interspersed among the trails and fields of oak. I’ve been hiking there on my own since Riley was a newborn strapped to my torso in a baby carrier 12 years ago. The scariest encounters would include a fistful of teenaged boys wandering into the dusky acres to get stoned and an older man donning a hat and sunglasses that set of my dog’s attack instinct. And neither of those were actually scary. Still, I couldn’t help but hope for a fight. I pictured this faceless stranger and readied my response: “Yeah, you want to mess with me today? You might want to rethink that because I’ll claw you open.”

Today, you see, is the 6-month anniversary of my son Riley’s death. I rubbed a green glass stone between my fingers as my legs took me along the trail. I couldn’t feel them and was amazed that I managed to stay vertical. They are numb so much of the time. I have to think about my arms, too, and will them to grasp and shift and lift and brush. The only part of my body that I feel is my heart. It beats with mind-boggling regularity. The simplicity of it--unconscious, reliable, unfailing--yet something his heart could do no more. When I’m still, I feel the muscle thumping against my ribcage. Then I remember those hours as his heart slowed, slowed…… slowed…………. slowed…………………... until it squeezed for the last time. Afterward, I crawled onto the bed beside him and held his still body. Then I left him there, alone, and got into my car and went home without him.

The muscular golden dog trotted up beside us as we walked the hill to where I visit the stone memorial I made for Riley. It looked like the Rhodesian Ridgeback with the same name I met a few weeks after Riley died. How fitting, I thought to see that dog again on this sad anniversary. I hadn’t seen him since November when I couldn’t bear to speak that horrible truth to his owner.

“Haven’t seen you in a while, Riley,” I said to the dog as he followed my girl Pepper as she leaped after her tennis ball. Then coming down the hill was the dog’s owner and a friend. As they approached me, I said, “Is that Riley?” just wanting to make sure it was the dog I thought it was. The man said yes. “Do you spell it like this?” I asked as I pointed to the black grief band I wear with RILEY embroidered in kelly green. He said yes. “Is that your dog’s name, too?” his friend asked. “No, it was my son’s name. He died six months ago today,” I said.

Their faces twisted with compassion as the emotion dripped down my cheeks. “That’s got to be the most difficult kind of hard,” the friend said. “Are you getting some support from a counselor?” I am. “I have a lot of support; I’m really lucky that way. But I can’t say it makes it any easier,” I said. “I can’t imagine it does,” he replied. We talked about the dogs for a bit and I pet this furry Riley before continuing up the hill.

I am so profoundly sad and heartbroken and it is still so very impossible for me to believe that he has died. With two houses, it just seems like he must be at his dad’s house. And then there are all the days when C is with me and Riley is not there and that idea that he is just at his dad's house becomes even more impossible.

I miss the simple things...his crazy soft hair, the way he bites his cuticles, how he couldn't hear me ask him a question when he was reading, the way he said "mom." I miss the way he held his Freddies--his beloved penguins--one in each arm at bedtime.

Impossible for people who have not lost a child to understand what it feels like, imagine a gaping, constant loss. Every time you see one of your children--every time you eat together or go somewhere in the car, someone is missing. Every time you talk to one or your children or think of them. Every time you wash their laundry or pick up one of their books or shoes, or every time you imagine tomorrow or the weekend or summer vacation--delete them from each of those images. When you grocery shop, you don't need to buy their favorite cereal. When you go to a child's baseball game, or school event, or see one of their friends, it is a reminder that they are gone from this world. Every night when you kiss them at bedtime, they are not there. It's like losing Riley hundreds of times each day.

Imagine never having another photo of your child. There will be no more photos of Riley. There will be no more pictures drawn. The few precious times I’ve happened upon a scrap piece of paper that he doodled on, it instantly became a sacred item placed on the desk in his bedroom because there will be no more doodles.

No, there were no leery individuals on my hike at Pulgas Ridge. There were no fights for me to funnel my anger into. It was just me and my own internal battle, a wild spectrum with weapons crafted of rage and sadness, loss and disbelief, pain and numbness. It would have been his 12th birthday on April 2.

Grief and another death

Like getting ready for a date, I drew black lines over my eyelids, dabbed mascara to darken my fair lashes, and pressed a few curls into my hair. I slipped my feet into black heels. Gray slacks encircled my legs and a black blouse hung around my torso. As I assessed this dressed-up version of myself in the full-length mirror near my closet, I didn’t recognize my reflection. “You can do this,” I said to the woman starting back at me. She didn’t reply, only looked at me with her sad eyes and sad face and solemn outfit.

Heart made by his daughter

The act of getting dressed and styled had nothing to do with a date. Our family was headed to the memorial for our neighbor—a husband and father with two young children. I didn’t really know him, but we saw him every day as he walked his daughter down the hill to school with his young son and family dog in tow. Holding hands, looking at leaves in the gutter, and admiring stones and bugs, they were a part of our morning routine as we looped back from dropping our big kids at middle school. That simple act of walking with his children will be the image I hold of him; it’s a lovely image. He had a gentle, loving presence and a gentle, patient voice.

“I wish I’d taken some Vitamin A,” I’d said to my husband as my heels clinked along the sidewalk, referring to the anti-anxiety medicine I’d been prescribed before Riley went into the hospital. “Do you have it with you?” he’d asked in reply as he extended his arm for me to clutch. I didn’t, and my body was rigid with the emotions of my son’s death and of walking into his memorial only a few months ago. Another untimely death. More grieving children and families.

Where Riley, father, and family cat live now

This Death seems to have paid no attention to years. This Death has given little consideration for the young people left behind who grow up without their brother or their father. This Death couldn’t care less for the bereaved mother (vilomah) or the bereaved wife (widow). This Death is a thief. This Death has stolen time. This Death has snatched the yet-to-be celebrated milestones because someone will be forever missing. This Death has dropped us into a forest thick with lost and sorrow. Death—you greedy, unfeeling charlatan.

These two unrelated deaths—an 11-year-old boy and a father just three doors down—seem related. I like imagining this father’s energy mingling with my son’s energy, looking after him. This sweet man who walked his children to school every single day.

As I sat in a row of chairs, my eyes were locked on the images of this man’s life. There were pictures of him as a toddler, the preschooler (like his son), the elementary schooler (like his daughter), his teenaged years, college years, the young couple in love, their engagement party, wedding, with his newborn’s sleeping body pressed to his skin. Friends and acquaintances sat by my side, held my hand, asked about how I’m doing and how I’m feeling about Riley’s approaching birthday. Their questions tried to bridge the gap between the two realities we now live in. “Today isn’t about me,” I replied. But with barely a pause, I talked about Riley anyway, cried, and cried some more for this now misshapen family.

It’s true that the day wasn’t about me. It was about us—all of us: her, her husband, her children, the rest of her family, me, Riley, my other children, the rest of Riley’s family, and the community of other people who also grieve these losses. And even though the day wasn’t about me specifically, it would have been impossible to turn the volume down on my own grief. So perhaps when I told my reflection that morning: “You can do this,” I meant that I’d get through the memorial by being as authentic to the experience as I could. I didn’t pretend to be anything other than what I was—a grieving mother who is also grieving for her neighbors.

Grief and judgments

Riley memorial at Pulgas Ridge

A few days before heading to Hawaii with three girlfriends to grieve and reminisce about when our children were babies, I went to the nail salon to have a manicure and a pedicure. I’m still not sure why I went to the nail salon in my town given that I’m currently afraid of the general, not-grieving population, but that is where I went—probably out of habit. Cautiously inching along the shop’s long hallway, I surveyed the other patrons looking for familiar faces from under the brim of my cap. There were none and I felt slight relief that I could be anonymous as I indulged in something so trivial as trimmed cuticles and brown nail polish.

Not long into my pedicure, a woman was seated to my right. Her young daughter was seated to my left. They chatted about their day and the brother at school and I decided to use that moment as an opportunity to say out loud that my son had died. I could practice saying it to this stranger. I could ask her about her kids and we’d talk about our children, so normal.

“How old is your son?” I asked during a lull in their conversation, wondering if he knew Riley or about him. “And does he go to Brittan Acres?” She said he was about the same age as C, but goes to a different school. Like the moment before a falling glass meets the ground, I knew our conversation was about to burst into tiny shards of shattered thoughts. I set it up and waited for the impact, the mess of my reality. “Do you have other children?” she asked. “I used to have a 6th grader,” I muttered. That was all I managed. Once I said it out loud, I didn’t know how to say anything else. Honestly, I wasn’t even sure she heard me because I said it in what felt like a whisper, forcing those broken words from my lips. And the words felt so jumbled as they fell, that I wasn’t sure—even if they were audible—that they weren’t nonsensical.

I wanted to try speaking my truth in a way that made it sound normal, given that it is anything but normal. She was my guinea pig. She was silent after I spoke, we both were. Our conversation was broken, jagged, a messy beast to slowly back away from. The fact that was I was even getting my nails done felt so wildly inappropriate. How could I possibly be getting my nails done given that my son had died? How could I possibly do something so frivolous given that something so profound had happened? I felt ashamed.

A few minutes into the silence, the nail technician moved me to a different seat so that my toes could dry under the tiny foot fans. Once they were completely dry, I thanked her for taking care of my feet. Then I slumped out of the shop avoiding eye contact with the mom who I envisioned was on the verge of shouting at me: “Your son just died and you’re getting your nails done?!”

That awkward encounter played in my head over and over. A couple of weeks later I got an email from that stranger. She said in her message that she had recounted our interaction to a friend and that her friend replied: “You met Riley’s mom,” and pointed her to this blog. She told me she wished she’d given me a hug that day. Her message included a virtual hug. “No big words,” she wrote, “just know a total stranger has your heart and mind in her prayers.” Her note was filled with compassion. And she didn’t judge me. Quite the contrary. She wrote: “AND I thought how WONDERFUL it is that you are letting other people take care of YOU. Whatever it is I would imagine each part of YOU needs nourishment—your heart, your mind, your feet, your soul!!!”

I want to believe that the chance encounter that led to that email from a stranger was the universe’s way of saying it’s okay to take care of myself. It’s okay to leave the house. It’s okay to have my nails done, go for a hike, drink a latte in a coffee shop. Maybe no one is judging me even though it feels that way. I suspect my biggest obstacle, the biggest critic, the most judgmental person approving and disapproving of how I spend my time as I try to learn how to move among humans who haven’t lost children—sadly, is me.

Grief and clothing

Riley's clothes neatly folded

Snug tee shirts with baseball logos or stripes that fall just below my bellybutton aren’t really my style. But my son’s shirts somehow fit around my torso and fleshy, upper body girl parts. For three days, I wore them hoping to channel my now dead 6th grader, pleased, yet bewildered that this stack of unused clothing used to cover his body. Everything he wore was baggy. It was only when he stripped down without a thread of modesty at bedtime was I reminded of his thinness and how his bones were held together with so little.

Late Sunday afternoon, I tried to complete an outfit. Sliding the shorts up my legs, they got stuck somewhere slightly above the knee. I was bemused that they didn’t fit. I thought they could somehow manage my grown-up body because we always had pulled the elastic so tight around his slim eleven-year-old frame. Surely there was enough cotton and elastic for me. Once I hiked them up as much as they could go, I stood in front of his closet for a bit wondering if I’d lodged them into my flesh just enough keep them in place. I mentally scanned my closet to imagine what I could wear that was long enough to make it work. But then I realized that I’d have to replace his tee shirt with something else, and wearing his tee shirt was comforting.

After removing the shorts from the mother's body, I folded them neatly and returned them to the son’s closet. From there, I went to his twin-sized bed, opened the comforter, and let it swallow me. Once inside, while wearing his tee shirt, the items on his side table caught my eye. I fastened his watch around my wrist, hung his Rainbow Loom necklace from my neck, and put his glasses on my face. From that perspective, while clutching the Freddies (his beloved penguins) in my arms, I flipped through the pages of the map book he made with his best friend, hoping to find him as I experienced the world from his vantage point. 

Grief and the first Christmas

Outside there are lights glowing. They are hung around windows and along fences. They are inside too. Twinkling greens and reds and whites probably hug a tree in your living room. At the same time, there is darkness.

You can’t see it from your comfy couch, from the seat next to the fireplace near the twinkling lights. This darkness is inside my house. It festers inside of me. The flow of circulation, the beat that pushes blood, the exhale that forces the inhale—it is all gone and replaced with darkness so deep that I’m still falling, yet to hit the jagged floor. I give up. I give up already. You have won, Darkness, and I surrender. Anything you want, I give. Take it all. Just give me my son back. He died in October, and I have suffered enough. How do I make my 11-year-old son's death undo itself? How do I make his failed heart operation a success?

And then there were three...

You’ve stolen from a mother’s arms. Stolen love from a younger brother’s heart. Stolen friendship from a boy who catches the ball, who always pulls his friend’s backpack. Stolen a companion from the siblings whose tribe is broken and uneven without their brother, the boy with the faulty heart.

I avoided Halloween as I prepared for my son’s memorial; I avoided Thanksgiving by ignoring it, any nearby merriment drowned out by the reliable ocean smacking the beach near our campervan again and again and again. But not Christmas. It came into my house. The tree’s branches punctured my lungs and made them weep. Darkness drips from those wounds.

This is Christmas, friends. So this is Christmas.

Grief and ranting

Glossy magazines glorify tragedy. Everything is summed up in 800 words and the tragedy becomes a feel-good piece. It’s spun so that a positive message is felt by the person experiencing the loss as well as person reading about the loss. It's fake. A handful of well-meaning people, who have probably read those glossy articles or seen glossy TV, have told me to snap out of it, get out of bed, out of the house, to be grateful for what I had/have, and face the world. That Riley’s goodness supersedes his death. Society wants me "to get over it," to have "closure," to be grateful that I have other kids. Not every story has a moral. And no matter how we spin it, Riley was better alive than he is dead.*

C only knew life as Riley's younger brother. He knew who he was because Riley reflected who he was back at him. For years, his sentences ended with: “Right Riley?” And I only know parenthood as Riley's mom, as the guardian of the boy with the crap heart. And now that he's died, I'm lost and I feel like a cliché. I'm broken, fragile, and shattered. I have lost any sense of self-esteem, I cower away from people and situations, am forgetful, stutter at times, am easily startled, and am entirely exhausted and drained. I start sentences with the phrase, “My therapist says…” For the rest of my life, I will try to figure out how to live without him, and I'm being gentle on myself and helping around the house and with the kids when I feel up to it. I suppose doing anything beyond the comfort of bed is progress from where I was a handful of weeks ago.

It sounds bitchy and horrible, but my other children are not Riley, and I don't feel grateful for much of anything right now (that doesn't mean I don't have things to be grateful for...my list is very long, but it's hard to have perspective on that even though I know there is much to be grateful for). I always told Riley, "Don't ever let your heart be an excuse for not trying your best." And he has recently told me, "Don't ever let my death be an excuse to lie around in bed all day." I hear him. I hear all of you. I'll eventually get there.

Also, Riley is with me in spirit. He is part of my essence, just as I was part of his. He is everywhere. And yet he is nowhere. And having him in spirit is not the same as having his skin to caress, his hand pressed into mine, his hair to bury my face into. They are different. Your attempts to convince me otherwise are your attempts to make sense of something that doesn’t make sense and will never make sense, no matter how many times you throw God’s will into the mix. And if my brand of mourning happens from the comfort of my bed with my laptop warming my knees, I'm okay with that.

My son last Christmas, not hiding his scars

So yes, I have four children and I don’t have four children. I can hug three of them. I can tuck three of them into bed. I can hear three children’s voices. One of them I can hug only in my mind, I can listen to only in my thoughts, and his empty bed will never we warmed by his beautiful and imperfect body. I assure you, gentle reader, that they are not interchangeable.

For 11 1/2 years, I rehearsed Riley's death. I imagined it his whole life. And as horrible as I imagined it, imagining it is nothing like living it. The permanence of it is crushing. With each of his other hospitalizations, it was horrible and horrific, but it ended. He eventually stabilized and came home. There is no coming home. There is no going back. This is forever and all I want is for it to unwind itself. But here I am instead. I will lie in bed and write and cry. I will take C to the dentist and the kids to school. I will be mad and scream into the carpet until I burst hundreds of capillaries around my eyes. I will also laugh and feel lightened when Riley sends letters into my head as he did the other day. It's so fucked up and unbelievable and unbelievably true. Yes, my husband and my other people need me. My therapist says that life is a marathon and not a sprint. And I get to fumble around in grief on my own timeline, even if it makes you uncomfortable, even if you think I'm doing it wrong.

My spectrum of feelings on any given day—or hour, or minute, for that matter—is broad, nonsensical and nonlinear. I will take the time to grieve in my own way, feeling all of my feelings that crush and motivate, that paralyze and swell, that punish and rage, that open the lines to communicate and clamp them down again, and I will not apologize for any of it. Rant complete...

*To be clear, Riley alive and suffering is not better than him being dead and free from medical horrors. When I say, "Riley was better alive," I’m talking about Riley living, away from the hospital, going to school, spending time with friends and family.

Grief and forgetting

Bedroom on wheels

On Thanksgiving I was in a tiny camper van with my husband and our dog. The interior was blue and white with a little kitchen and a mini shower stall. There was nothing to distinguish that specific Thursday from any other day that week. 

Since my son died six weeks ago, I’ve spent most of my time horizontal in the safety of my blankets cushioned by piles of wet tissues. In order to get me out bed and out of the house, my husband rented what he called our “mobile bedroom.” The safety of bed could travel with us. There would be sunsets out our tiny bedroom windows near the beach, hikes in the hills or in the redwood forests—only if we felt up to it—and many rented movies watched while reclining on pillows. I even think we skipped Thanksgiving dinner because we’d eaten a late lunch. It didn’t matter. The point was that I was out of the house, out of our bedroom, with the safely of a bed and my familiar duvet.

We picked up our bedroom on wheels in Monterey. We camped that first night in a campground in the hills, then headed south to the trees of Big Sur, before spending the next three days in Morro Bay. On some nights the beach was just steps away from our parking spot. We strolled along the sand, watched the sky fade from blue to being streaked with orange and pink. We warmed up leftovers from the parade of dinners that our community delivered to our door in the previous weeks. We drank Moscow Mules and alternated eating chocolate-covered things and piles of radishes. Come to think of it, I'm the only one who ate radishes. “They’re like spicy apples without seeds,” I’d declared. My husband stuck with chocolaty things.

Each day, a black wooden picture frame displayed a different wedding photo, us smiling, any underlying cares invisible. It was my husband’s romantic gesture. I carefully examined each photo and marveled at the joy on my face.

I don’t know that woman anymore.

Unimaginable joy before death

Still, despite feeling so consumed by grief and disconnected from that person, there were hours when I didn’t cry. My swollen eyelids shrank to normal size. The pile of tissues subsided. And I joked about this and that—mainly the comically small shower, how our mini camper was basically a sailboat on wheels (my husband loves sailing), and how the only place the dog’s bed would fit was in front of the slim door to the bathroom, forcing her to maneuver her 70-pound frame out of the way countless times each evening as we went into and out of the bathroom.

On our last evening, when we finished our last movie from iTunes and I quit the application for the first time that week, I was confronted with the desktop picture on my Mac—a picture of my two boys. Riley was five; C was two. They wore matching sweaters and each held Christmas tree ornaments. I hadn’t seen a picture of my boys all week. My house is filled with photos; and since Riley died we have piles of photos out, new framed pictures hanging. He is everywhere at home and was nowhere in that camper. Until that moment.

Forgetting him and my intense sorrow for those days felt like betrayal. How did I allow myself to laugh? How did I allow myself to stop crying? Stop howling? Stop doubling over with grief to the point where I felt like throwing up? Stop screaming to the point where I burst hundreds of capillaries on the skin around my eyes, wondering how the neighbors had not called the police? I like all of those miserable things. Truly and honestly. They feel good, real, satisfying, safe. I swim in those feelings and dig my toes in the way one might with warm sand. That intensity and pain connects me to my dead son. As debilitating as it is, I hope it never ends. It is palpable and almost visible like our love.

The remaining hours in that camper were tainted by my betrayal. And I needed to go home again, to my real bed in my real bedroom, to roll around in my sorrow, to feel connected to him again. I'm terrified of forgetting anything, any moment. I can't imagine ever living normally because I imagine that feels like leaving him behind.

Grief has no name for me

Someone who loves is a lover. Someone who fails is a failure. Someone who disappoints is a disappointment. Someone who drinks is a drinker. Someone who learns is a student. Someone who teaches is a teacher. But what is someone who experiences a loss?

There certainly are a lot of adjectives to describe that person—sad, despondent, bereft, grief-stricken, let down, wounded, hurt, scared, worried—but no nouns come to mind. There are nouns that describe certain kinds of loss. A woman who loses her husband is a widow. Someone who loses a limb is an amputee. But I cannot find that definitive word that encompasses the common life experience of loss. Or more specifically, my loss.

Proud mama, dead son

I wrote this piece in 2012 when my son was nine years old. I felt lost in my journey with a child with serious medical problems who would eventually face more heart surgery, but it is more relevant than ever now that he has died. I was reminded of this piece the other day after another heart mom shared this: “A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. There is no word for a parent who loses a child. That’s how awful the loss is.” ― Jay Neugeboren, An Orphan's Tale

The quest for this particular word started as an exercise from a book I was reading. The objective was to describe myself using nouns--no adjectives allowed! I came up with daughter, friend, mother, divorcée (silly word, but it is the noun to describe a divorced person), dancer, and writer. But I also wanted a word that encompassed emotional trauma. Without a noun to represent that part of my life, my list didn't describe me completely. My loss is just as much a part of me as the way I leap and spin during dance class. It is a part of my essence, the way that writing is part of the way I communicate. A list describing me without including a word around loss, is like trying to describe a sunrise without the word light.

When I had pushed my son into the world nine years earlier, I lost the motherhood I’d hoped for. Lost isn’t a noun, but it encompassed that feeling of not remembering how to breathe or sleep or eat. It encompassed the frustration around having to digest medical jargon. It encompassed the nauseating ache when wandering the hospital looking for the Neonatal Intensive Care Unit. It encompassed the shock and disbelief after doctors said my baby only had half a heart and needed several operations. It encompassed that feeling of knowing that every dream I ever had around parenthood was just that—a dream.

And now that my son is dead, I feel even more disappointed that our language fails not just me who is feeling so raw from his death, but all parents who suffer the death of a child. What are we? Why is there no name for us?

In 2012 when I wrote this, I considered that the noun I was searching for was human, even though human did not technically complete the exercise. Being human means many things, one of which is someone who experiences loss. At the time, considering human reminded me that my loss wasn't unique or any more extraordinary than my friend’s loss when her baby died. It wasn't any more unique than my other friend’s losses with each of her failed fertility treatments. My loss wasn't any more painful or stressful than my friends' who have children along the autism spectrum. Experiencing loss is part of what unites us as humans. It’s also part of what makes us individuals and steers us as we identify with all the other nouns on our lists.

Sure, my loss had evolved and changed over the years as my son grew and endured each hospitalization. There were even times when it no longer swallowed me with every inhale or haunted me every time I closed my eyes. In the seven years between his 5th and 6th heart operations, people would have described me as happy, joyful, and full of life despite the challenges my son endured (and that I endured along with him). I laughed often and embraced love and life's opportunities.

But that was before my son died.

Now that my son has died, I no longer know who I am and human is definitely inaccurate and inadequate. Yes, every human experiences loss. But this specific loss is so horrid that being lumped in with every breathing person on the planet is not a comfort. It makes my loss feel even more invisible, isolating, hidden, solitary, indescribable, and unnameable.

Failure to communicate

There is a stack of unopened envelopes in the cubby downstairs. Red and blue and green and cream-colored paper displays my name and address neatly written in cursive. So many letters, so many names of people I’ve known at different times in my life. They have all gathered together to prop me up with their words. I don’t know what to do with them aside from put them in the cubby. That impressive collection of feelings is waiting to be felt as soon as I am strong enough to feel them.

Unread

Right now, opening them seems impossible. If I open them—when I open them—that will be the end somehow. The flood of support will be over. If I leave that stack of envelopes alone, there are still things to be said. And as long as I have that stack of letters, people are still thinking about us because their sentiments are unread, unsaid, waiting to hold me when I need to feel not quite so alone.

After Riley died, almost inconceivably, the World Series teams pitched and scored against each other. Children and grown ups slid into costumes and ate Halloween candy. Babysitters were hired, Saturday night cocktails were imbibed, and dinners in dimly lit restaurants were eaten. Now Thanksgiving is looming while the reds and greens of Christmas twinkle from shop windows. People are buying milk and condoms just like any other day because there is still cereal to eat and sex to have. The world keeps going. Yet, somehow I feel like I’ve stepped every so slightly from the earth’s surface and the wind is slapping me raw as the world keeps spinning without me.

All of our family and friends packed their neatly folded green sweaters into their luggage and left town a week ago. Riley’s celebration was the end for most people. But for me, it was the beginning of quiet. Of lonely. Of alone. Family may have returned to their own houses, their own towns, their own families, their own activities and distractions. But this is my house, my town, my family. Any activities or distractions I have are distorted because someone is missing. Our six-chaired table typically evenly balanced with four kids and two grownups is now lopsided.

Honestly, I don’t know what I’m doing aside from getting through the day so that I can go to bed at night and getting through the night just to begin the next day. I don’t know what I’m doing besides killing time. I have talked to no adults—aside from my husband—since family left. And as I pounded my feet along the sandy trail near our house this afternoon, I realized I’m terrified of talking to anyone. I’m afraid of seeing people I know. I’m afraid that someone might recognize me. Without the dog to walk, I might never leave the safety of my warm bed.

In all of this fear of communicating, I keep thinking of an email that a friend sent me after I told her that Riley would be having surgery. She wrote: “This news…reminds me of the special challenges you have been awarded (not quite the right words, I know) in this life. And yet... you do such an amazing job of being a person who glows and sends loving energy out beyond your skin to the people around you, which is such an incredible gift, and all the more special and awesome, given the fear and underlying uncertainty you live with.”

I thanked her for seeing those things in me and reread her words countless times in the weeks leading up to surgery. I hoped that those words could reinforce my unsteady frame, shield me from crumbing, disintegrating under the weight of what we faced, the unknown. It was almost a mantra: I want to be that person, I want to be that person, I want to be that person. The fact that I ever was that person seems incomprehensible. 

I cannot glow. I cannot send positive (or even neutral) energy to anyone because I am unable to communicate. I have not responded to text messages, phone messages; I have not read any meaningful email in a week. I cannot open that stack of letters. I no longer know how to be in the world.