wortlos: a decade

There aren’t a lot of words to use ten years after the worst words are first spoken. What is there to say when I can hardly grasp that a full decade has passed since I held a very sick boy through the night wondering what could possibly be wrong only for our family to be ushered in the morning into blood tests and hours later an ER and an ambulance ride and an oncology wing of a children’s hospital?

I have written those series of words so many times that I no longer think them when I write them. They are a well-rehearsed script for a woman whose life I do not recognize. I was a mother to a boy who was very sick, but I am now a mother to a girl who is not, who is twice his age. I scarcely remember that scared mother. And I am that mother. My brain cannot grasp this with any amount of logic.

For the past few years it has been difficult to write or say much of anything. People grow uncomfortable talking about loss after so long, even if they miss him too. I grow uneasy not knowing what to say. I meet new people now, parents of my daughter’s peers, and I find myself reassuring them when they learn of my boy, when they are sorry for my loss, when they cannot imagine the depths of my pain. I tell them sometimes that it’s okay, that mostly I am okay. I tell them that it is awful, that they should not try to imagine because it is far, far, far worse than imaginations can entertain. I say too much. I say too little.

The words that carried me through the diagnosis and the treatments and the death and the grieving and the longing and the missing are themselves so fleeting.

I miss them. I need them.

I miss him.

I used to feel that in keeping the telling alive, I kept him here. I kept him closer to me, to everyone else, and that meant I was coping or healing or something. It was something to steady me when the pain rocked me hard. In losing the words, what happens to him? But it was easier then to talk about the timbre of the pain, easier to puzzle it out. It was fresher, the fluency crisp. Now, I go weeks without giving the grief a name. It takes the quality of sunlight shifting, calendars growing swirly with birthdays and school. It takes the days and my moods growing equally shorter and less predictable, tears coming easier, to begin to grasp that it is here.

Oh, hello, Grief. You are looking different now, aren’t you?

Crunchier, dustier, muddled and muddied up with new sorrows and losses. A whole pandemic. Grief begins to look like a stranger in a store coughing near still-masked me, and me feeling rage well up, and when it does, tears spilling out along with the muffled and fast-tracked words, “My son had leukemia and died,” and I am shocked and the stranger is shocked because I wasn’t expecting that dark visitor, and certainly neither was he, but there it is, ugly and uncomfortable, words sitting in thick air, and I am here still just needing to protect my living child and my dead child from invisible predators.

There is a shortage of eloquent words for this stage of grief. Apologies are about all I can muster.

Maybe it’s a supply chain issue. Not enough to go around for so much weltschmerz and a mother’s patina-coated grief too.

Maybe words are overrated. Maybe they will return. I try not to agonize over it too much until days like these when I need them so.

Ten years. Soon his thirteenth birthday. Another five months and the tenth anniversary. The years keep piling up; the words keep floating away.

Caemon, almost three, a couple of weeks from diagnosis.

opening day

Grief season began today. Every year as I spy August around the corner, and people start talking about kids going back to school, I start to feel incredibly uneasy. And before I know it, there it is on the calendar: August 20^th, the day the crack in the ice opened up, the day the oxygen left the atmosphere, the day I learned the monster under the bed was real.

The months between August 20^th and February 5^th are filled with daily reminders of Caemon’s treatment. I obviously think of him in the “off” months. I grieve him openly and heartily. But August through February are peppered with memories of some of the most terrifying moments of my life, all culminating in the nightmare of losing my son.

Today, it has been six years since I rode for the first time in the back of the ambulance, my son strapped into his car seat, strapped to a gurney. Six years on, it is hard to know what to do with a day like today. I am careful these days not to relive too much of the trauma. I don’t need to sit in the moments when I was shaking so hard I couldn’t sign my name or shivering in the sweltering August heat because I was in shock. I don’t have to feel the trauma of holding him down for his first IV or the world going dark when I first heard the word leukemia. I know that I don’t have to relive the worst days of my life to see that they are there, but as this year’s grief season begins, I’m a fool to think I can avoid them entirely.

I know so many families now, so many families who have lost children to cancer, families who endured years of treatment, families for whom the entire year is filled with traumatic date after traumatic date. In this way I am lucky if there is luck to be found in losing my son. My dates are condensed, cooked down into the most concentrated and potent five and a half months imaginable. Much like Caemon’s disease. Much like Caemon’s life.

Grief season is upon me. My birthday comes soon. Then four short days after, Caemon’s birthday. There’s the day he first went back to the hospital, then Halloween, when we had to return early again. The last trip home in early December, then Winter Solstice and and bone marrow transplant and Christmas. And there is relapse, and there is his death day, and then it’s done. Grief season is over, just like that, and before I know it, I have memories free of hospitals. I have hikes in the redwoods and trips to the beach with my boy, whimsical weekends in hotel rooms, or days at home, walking to the park to swing. I ache for my son just as much during these days, but the off season is lighter, less shrouded. I can breathe.

But grief season is here with its dark, heavy cloak, and tonight, as I sat with the heaviness of that familiar garb, I lit a candle in front of Caemon’s photo.  I touched his face. I spoke with him. I wished so hard that I knew what he would be like now. I apologized to him that I couldn’t save him, and then I walked away for a moment. I wandered my house looking for something to hold, feeling my arms were empty. I scanned the room looking for something of him to hold. I walked into my room, earnestly searching, for what, I did not know. But my son was not to be found. His ashes rest in his box on the mantle, but this box, the crocodiles, even his favorite teddy bear, none of it were what my arms craved. I panicked for a moment. What could I hold? Finally, I stopped. I stood again, staring at his photo, held my arms out as if to welcome his embrace, pulled them back to my chest, empty, and wept.

Image courtesy of In Her Image Photography

secrets

Below is a post written by Jodi.

I get credited with a number of positive traits like strong, capable, generous, and even inspirational. What if I told you that those are lies and you shouldn’t believe them? What if I told you that I am not at all strong, in fact that I am permanently broken and only a fraction of the person I was four years ago. What if I told you that I am sometimes incapable of even the most mundane tasks? And that what you see is what you want to see projected back. We all want to read the story of the hero who overcomes insurmountable odds, inspiring us to overcome our own sorrows and regrets, and I wanted to be that hero. For Caemon, for you, for my daughter, I have wanted to live up to that image. Fake it until you make it, I was told. I showed up to the events, stood on stages and told my son’s story again and again.

Right here on the pages of this blog I lied, or omitted the truth, and sought to project an image of strength and courage. In fact, I was losing nearly every friend I ever had for reasons I couldn’t understand; my marriage was crumbling; my hope dwindling. I drank until I could no more, and I didn’t tell you when I stopped. You might have congratulated me, but I didn’t want the attention on me.

I didn’t want to damage his legacy, my sweet Caemon. Losing almost everything wasn’t part of the story I was trying to write, but it is the truth. In all things, I wish to be truthful. Caemon was the strong one, the generous spirit, the inspirational figure, and I am just trying to be worthy of telling his story.

three years, five months

Three years, five months. Three years, five months. Three years, five months. 

This has been the refrain playing in my mind since July began. Three years and five months ago, my son took his last breaths.  He has now been gone as long as he was alive: Three years and five months.

I remember talking with another mom just three months after Caemon died. Her daughter had been gone for fifteen years, and she spoke mournfully of the day she was gone longer than she was alive. I remember thinking in that moment that this was a day I would dread. It was something that would loom long in the future. Would I even manage to survive three years and five months without my son? And then longer? Years later, here I am, still living, still breathing, still remembering.

And although this day has been looming in my mind’s calendar for years now, I have had trouble with what to make of it. I can hardly grasp that this time that has gone so quickly without him was the same time he spent on this earth. It feels unreal, but then, so does his short life sometimes.

The first three years of Caemon’s life were the best of mine. He made me a mom, something I had longed for for years, showing me the expansive love that comes along with that role. And Caemon himself, oh how he lived! In the time leading up to Caemon’s diagnosis, our little family was thriving as a triad. With his illness and then death, it was like the worst of eruptions, leaving nothing but a smoldering crater where my joy, my hope, my family, my son had been.

Two years ago, Jodi and I took a trip to Crater Lake–a lake formed in the caldera of a volcano. What was once a mountain is now a crater filled with the most pristine cobalt waters. Trees and wildflowers grow around the rim of this catastrophe-turned-wonder. But Crater Lake, as beautiful as it is, was forever transformed by the eruption that created this hole.  It will never be filled with the same material. It will never again be a mountain top.

This I am learning to be true of myself. In three years and five months without my son, I have not become the person I was before. Three years and five months have not reset me. I am a mother again, but I am not the mother I was with Caemon. That smoldering crater leukemia left is filling with beautiful things, yes, but never again by my boy. And we may be a lovely family of three, but we will never be the family we were, the family we were meant to be.

This week marks three years and five months since Caemon left my arms, three years and five months since I said my final goodbyes, since I drove with my wife back to our home without our healing son in the backseat of the car, three years and five months since the worst day of my life. Such a span is far too long to live without him. That I have to keep going, that he will forever grow increasingly further from my memory’s grasp is a new sort of heartbreak.

Three years and five months were all the days that Caemon lived, and in that time, he taught me to be a mom, showed me love like I had never known, fostered in me courage and strength. For three years and five months, he brought me joy bottled up in a blonde-haired cherub and the sort of laughter and wonder and light that no earthly body could possibly contain. 

Three years and five months was not nearly enough, not for me, but for Caemon, that painfully short lifetime was all he needed–to change me, to change his world.

the boy behind the glass

 

 

Recently, I was looking at photos on Caemon’s iPad, a gift our family gave him for his bone marrow transplant. When he received it, my budding photographer quickly found the camera function and began snapping pictures. He
photographed his feet, his hospital room, his bed, the ceiling, and now and then, he captured his gorgeous face. These images of his face, though, are usually somehow obscured. Some are blurry. Some capture only a small glimpse of him–a sleepy eye, a sly smile. And then there are these odd photos resulting from him tinkering with his camera settings, thermal images of sorts, which capture him in the midst of expressions so uniquely Caemon, moments when his lips were pursed in concentration or his grin seemed to broaden because he was in my arms. These are the pictures I want to see most. But instead of appearing true to life, they feature wild, Technicolor versions of Caemon. It’s him, but not quite. I can’t quite see my boy. 

Three years and one month have passed since I last saw my son. Soon–in four months– Caemon will have been gone longer than he was alive, and as this reality looms, I find myself straining more and more to remember his voice, to feel his little arms around my neck, or to quickly pull his face into view

Naturally, I rely heavily on photographs and videos. Any time I find an image of him that I either haven’t seen or have scarcely seen, my breath catches. For a moment, I see a new expression on his face, an angle that may not have been captured before. I study the image, commit it to memory. It becomes one more piece of him that I can carry, one more inch of my son for me to know.

But I can’t quite do that with the iPad images. I have tried my hardest to edit them into normal colors or black and white or some form that is more recognizable, but to no avail. These are Andy Warhol’s version of Caemon, not the boy I birthed and held and kissed. They won’t quite let me access the nuances of those moments the photos were supposed to capture. This has plagued me for three years and one month, and any time I see those images, I strain to see him. 

I can’t help but notice that this is how so much of my memory of Caemon feels now. I can see his face, but I can never fully bring it into focus, as though I am perpetually looking at his image through foggy glass. Lately, I find that the photographs are all I can remember, and this is unsettling too. I can remember the days that were chronicled with pictures; the others are hazy, and while I am glad to remember them, I am also troubled by how much less real Caemon feels. So I challenge myself, and I challenge Jodi, and she challenges me to remember him without pictures. We recall moments. “Tell me about what you two would do when I left for work,” she will ask me, and I will piece together bits of memories of baking muffins or walking to the park until soon I am remembering a life with my son more fluently.

We do this more regularly now. “Do you remember what he looked like when he sat at the counter drinking his tea?” one of us will ask. “What about when he would make a stack of books and sit in your lap to read?” “Remind me of how he looked when we turned that cardboard box into an oven.” It’s a game we play, Jodi and I, the game of remembering our son as he was, the way only she and I knew him. Those are the memories subject to decay as our minds age, as time wields its relentless eraser. We tell these stories and invoke these images, remind one another of the tiniest details the best we can. We do it over and over in hopes that we will etch them permanently into our consciousness. But for all that work, there are still things we have both forgotten. I will try to remember a certain phrase he used, and it will be gone. I try to remember the lower register of his voice before leukemia, and it’s just beyond my reach.

He is always just beyond my reach.

I so desperately want to see him, to hear him, and oh, to smell him, but he is fading with time as he must. It would be too hard for us to keep living were we to remember him with the same detail as we did the day he died. Time must soften the edges of our boy in order to ease the pain, but isn’t this the rub? I don’t want the haziness of a soft-focused son; I want the sharp clarity of a boy still here.

Recently, Little Sister has started to notice photographs of children in our home. Naturally, among these are photos of her brother. She smiles at the images when she sees them. Just last week, she was expressing even more interest in the photos of her brother, so I carried her around looking and then stopped in our hall where our family pictures line the walls. “This is your brother Caemon,” I told her. She grinned widely, eagerly. She seemed so happy to see him, and I wept to think she wouldn’t know him, but I delighted in her joy all the same.

The next day, I wanted to show Jodi her reaction to her brother’s photos, so I took her to the hallway. I told Little Sister, “Let’s go look at your brother,” and her head quickly turned toward his image. Once again, she grinned broadly, cooing, giggling even. She reached her tiny baby hands toward the glass, wanting to touch him, and Jodi and I both welled with such a flurry of emotion: relief that she seems to love him even without knowing him on this plane, sadness that she doesn’t know him here and now. More than that, we keenly understood what it is to want so fiercely to touch that handsome face only for the glass, time, and the cruel, cruel reality that is Caemon’s mortality to keep him forever out of reach.

Still, there is something in her desire to reach out, something from which I can learn. Her joy doesn’t end when she cannot feel him. She continues to smile and coo and even squeal just because she can see him. Of course she continues to try, and the glass is amassing a wonderful collection of baby finger smudges as a result of this new ritual she enjoys, but she seems to revel in just being able to see him at all.  I’m trying to allow myself a similar joy, trying not to feel only a greater sense of yearning when my hand is stopped by the two-dimensional representations of a boy no longer here.

I am fortunate to even have these images of my son–vibrant, shining, alive. So long as the photos are here, I can remember that I did indeed have a son, that my daughter had a bigger brother. Time will undoubtedly continue to steal strands of his memory. He will grow more and more difficult to reach. But nothing can rob me of the way he burst my heart wide open. Nothing can erase the imprint that boy has made on me.

 

 

soaking

Every parent of a new baby has heard countless times from well-meaning strangers, “Soak it all in. It goes so fast!” Jodi and I are no exception. So often when I am out with Little Sister, strangers will admire her and will encourage me to soak in every last second of her babyhood. They are quick to remind me how quickly this time passes.

Of course, I know how quickly it passes, perhaps all too well. I know how in the blink of an eye, days and months and years slip by, and I know what it means to have the most finite stretch of hours to spend with one’s child.

I spare the well-meaning admirers my story and instead nod, with a sad, knowing smile, and reply, “Yes, I know.”

I know just how to soak it in. I know just how quickly time passes.

Lately, I have found myself holding onto Little Sister while she sleeps because she isn’t enjoying sleeping anywhere else. I’m warned by others to put her down, that she’ll never learn to sleep on her own, and I just can’t seem to do it. What if her life passes just as quickly? What if hers is a bright, brief flame like her brother’s? I know it is not healthy to live like this. I know that I have to, as Jodi puts it, parent for the long term, and for the most part, I do. It’s what we did with Caemon, even during his sickest times. But the soaking it in becomes addictive. The knowing how quickly time can pass becomes obsessive. I am trying to commit every breath to memory all while trying to cling to the moments I had with my son. It’s a fools errand in some ways, but it is also what I must do.

The funny thing is, while I do have this need to bask in these moments with my baby, it does all feel less urgent this time around. When Caemon was a baby, I was terrified of the passage of time. I dreaded his first birthday. It was all speeding by in a flash, and his whole life, I felt I was running out of time with him. My heart somehow knew I was. But for Little Sister, I don’t have that same feeling of dread. I am shocked that she is nearly five months old, but I’m not fearful. Like most parents of infants, I live almost exclusively in the now, but when I think ahead, I’m excited. I can’t wait to hear her talk. I look forward to knowing what she is thinking about. I’m eager to know her quirks and what will make her laugh uncontrollably, what will pique her curiosity. Perhaps this is a gift her brother left me. I know that there is so much good to look forward to, that there are so many moments to take in. Maybe part of me does trust that she will be here.

I suppose that has been what has kept me from writing. I have been taking in all of these delicious baby moments while I can, and I’m remembering Caemon as I do. My grief isn’t always front and center. It can’t be when I’ve got diapers to change and crying to soothe. But it’s there. It’s there, and the stories to share and the thoughts to write about flit by most days, unrecorded. Most days I’m not able to sit down and quiet my mind long enough to process my grief as I once did. For some, I imagine this looks like I have moved on, and certainly the part of me that is actively mothering again has had to in many ways. But the grieving mother is still here. I’m still shattered. I still have a gaping Caemon-shaped hole in my center.

But that Caemon-shaped hole has taught me how to love his sister so fully, to understand the true art of relishing the twinkling smile of my baby when she awakes in the morning, the sweet smell of her breath as she places wide-open-mouthed kisses on my cheek, the feeling–oh, the feeling–of my child’s sweet head resting on my chest. I don’t regret one moment I spend taking my time to know every inch and every breath of my daughter, just as I will never regret the moments I spent basking in my son’s warm laughter or his tender hugs.

Yes, I will take it all in. Yes, I know too well. It all goes far too fast.

 

 

 

 

alien

I’m at a big blogging conference this weekend, something I’ve been excited about for some time because it is an opportunity to meet writers like me working to share their stories. Any event like this comes with its expectations, so as the conference neared, and I perused the schedule of speakers, breakout sessions, receptions, and parties, I found myself imagining what I would do. Because I was an honoree for the Voices of the Year, I particularly looked forward to the readings and following reception where all of the nominees would be honored. It was to be the highlight of the conference. The parties afterward would be a huge bonus where I could relax a little, meet some people, act like a normal person.

I just forgot one thing: I’m not a normal person anymore.

Cheryl Strayed describes this in her book Tiny Beautiful Things so aptly. She talks to a bereaved parent about why it’s so hard to function in the world after the loss of a child, that one grows to learn that everyone else lives on Planet Earth, while the bereaved parent lives on Planet My Baby Died. I can’t help but apply her analogy to my own situation. In fact, Jodi and I have come to use this regularly to describe a certain phenomenon we have from time to time.

The way I experience it is like this: I plan to attend an event—a concert, a wedding, a party, an amazing conference—and I go. I go feeling remotely human, even a little like I live on Planet Earth. I gear myself up for it, imagine myself talking to people, maybe having a glass of wine, enjoying some conversation. But then I get there, and reality hits. I disappear into dense atmosphere of my own lonely planet, and I float around observing the Earth dwellers, watching as they do normal Earthly things like laughing and relaxing and chatting. I watch, and as I do, my little planet drifts further and further into its own wonky orbit until I have no choice but to leave.

This has happened on so many occasions now that I should know to expect it, but I don’t, and this is inevitably the source of disappointment that I can’t engage in real world activities. But it has decreased in frequency in the last six months or so. I can often walk amongst the Earth dwellers and feel as though I’m assimilating, like I might even be one of them again. This makes it all the harder when it hits somewhere like this, when I’m in the middle of doing something I have been looking forward to for so long.

At this conference, it is common to introduce oneself to strangers, to ask what they blog about. Sometimes I go first; sometimes they do, but it’s almost certain that they will offer up a subject from Planet Earth, and then I offer up the soul-crushing fact that I write from another world, one they wouldn’t want to visit. The people I meet are so lovely, but that sense of feeling alien has not escaped me. If anything, it’s grown stronger.

Tonight, at the much-anticipated reception for the Voices of the Year, I entered the hall, ready to engage, or so I thought. And then I saw my nominated post printed on a giant board, and I saw people reading it. I grabbed a glass of champagne, tucked myself up on a set of stairs, and I watched from Planet I Miss My Son as people strolled by, stopped, read, dug around in their bags for tissues, and moved on. After watching for awhile, I tried to join in the festivities. I walked around myself a bit, reading other nominated blogs on similar giant boards. At one point, I stopped in front of one that had been honored in the Humor category, and as I read it, some women came up behind me to read it too, and they began laughing heartily at what was really a hilarious post. I was startled by their laughter. My response was tears. This was not an Earthly reaction.

I talked with myself for a bit, trying to shape up, trying to encourage myself to have a snack, check out some of these parties, chat with people, and ultimately get myself out of my funk, but that moment saw me drifting away on my little planet again, watching everyone through a saline fog, and I knew as I often do in these moments that I was done. I needed to go.

So I honored that. I won’t say I don’t regret leaving. I miss the festivities of the real world. I long for celebrations without grief riding shotgun. And I know in my heart that these will come one day, as will normal interactions with people and even expectations fulfilled, but not tonight. Tonight, I’m pulled back to this rocky orb with a wobbly orbit, salty seas, and big boy-shaped craters where I’ve made my home. It’s where I’ll be for now.

surrender

Have you heard
the laughter
that comes, now and again,
out of my startled mouth?

                  –from Mary Oliver’s “Heavy”

Jodi and I recently took our first road trip and camping trip since Caemon died. This was no small thing. You see, Caemon loved both. He loved going places with us. He loved riding in the car, listening to music, watching the world pass by. He loved anticipating where we would be when we stopped, and because he often did not know where we would be, he loved the exploration of our destination, whether a hotel room, his grandmother’s house, or a campsite in the redwoods. During Caemon’s last summer, we took him camping for the first time, apprehensive at first because we really didn’t know how he would take to it. Like so many new experiences, he embraced it–everything from hanging out in the tent to cooking over the little camp stove to building a fire so that he could have marshmallows for the first time to learning about rock skipping and cold river water. During those first (and last) couple of camping trips, we learned that as still relatively new parents, we needn’t fear losing this favorite part of ourselves, that our boy would be happy to come along, and we imagined the memories we would build with him, fostering his love for the outdoors, feeding our very souls as a family.

It should not have been overly surprising, then, when, while planning this trip, the mere thought of camping again threw me into a panic. While Jodi and I have spent many a night lulled to sleep by owls and streams and wind in the treetops, long before Caemon joined us, that dream of camping with our little family had solidified. It was what we were to have done from then on out. Camping as a family felt right. To go back to camping by ourselves was altogether wrong. But this was not surprising: everything we do for the first time without Caemon is just hard.

The crux of all that anxiety, though, the hardest part to grasp was something else, something that surprised me so much more: What was I going to do with all of that quiet?

I will readily admit that one of the ways I have made it through the past eighteen months without my son is by staying incredibly busy. In the first few months, I sat right in the middle of my grief, but as time passed, I needed productive escapes from it, so I worked, I visited with friends, I started teaching again, I went to meetings for work, I held fundraisers and spoke, I watched a lot of television, listened to a lot of radio programs. I filled my mind with something to process most of the time because to stop meant to sit in the muck of the grief again, to miss my boy so completely that every part of me would ache with his absence. At home, I am able to control how much I do this. I have grown keenly aware of the need to sit with the grief now and then, to give it some space, and I do. However, I can then go to the farmer’s market or watch a home improvement program on television or turn on my laptop and busy myself with work and gain the necessary respite from the pain.

Each time my wife and I would talk about this trip, my stomach would flip-flop at the thought of time with no distractions but the birds and the campfire and the wind in the tops of the trees. When she would ask if I was getting excited, my breath would catch, and while I might nod and smile, inside, I was absolutely not looking forward to this trip. I was terrified.

But I went. We gathered our gear, made some loose plans for where we might end up, and before we knew it, we were in our first campsite at Burney Falls near Mt. Shasta. And there I was, unfolding our tent, weeping uncontrollably because the last time I folded that tent, our son had helped me. The last time that tent had stood, he had been in it. And he wasn’t. And he wouldn’t be ever again. It was torture. I spent the whole first night in a terrible funk. I hated the quiet and the dark and the fact that I had no cell phone service. Even the distant sound of the falls upset me. I didn’t want to be here if I couldn’t have my boy. I went to bed as early as I could, read myself to sleep, ticked off the first of the ten or more days we planned to be gone. I hated that I wanted them to speed past, but I could think of nothing more than returning home to my distractions. Even work would be better than sitting so helplessly with all of this grief.

The next day, I felt a little better. It was nice waking up in the crisp morning air, and the anticipation of a hike to a waterfall was at least something to focus on. I was allowing myself to settle in to my camp chores, making coffee, building a fire, staring at the tops of the trees. Later that morning, we began our hike. Within minutes of walking, as I stared down steep cliffs to the rushing creek below, something began to shift in me, and as we neared the falls, as their roar became louder, and I could feel their thundering in my chest, I began to lighten. Descending to the base of the falls, I began to cry and then smile. I told my wife as we made it to the base that I was happy.

Happy? Had that word really just come from my mouth? I had to sit with it, and I did. I sat at the base of this glorious waterfall, grappling with the idea of happy and finally just decided to feel it because this, a little voice was telling me, was why I was still alive. There was beauty to see, awe to be felt, and so I sat with that too, all the while wondering what Caemon would have thought of the spray on his face, the anglers casting their lines, the funky bridge with the same name as his school. I missed him so, but I felt good too, an ever-present dichotomy with which I had recently lost touch.

As our trip continued, Jodi and I drove up the middle of Oregon. We were following a volcanic trail, some of the land decimated thousands of years ago by eruptions only to be replaced by gut-wrenching beauty. That we were drawn to this was no mistake. We both long to find the sacred and the stunning somewhere in our own lava flows and pumice deserts. This landscape brought me more peace. The thin mountain air overlooking Crater Lake, the majestic peaks of the Three Sisters, the soaring, jagged cliffs of the Cove Palisades–all of it healed me bit by bit.

Our favorite nights were spent in the Columbia River Gorge, where we found ourselves among old growth Douglass Firs and ferns and spectacular views of this landscape carved by ice and fire and water. One morning, we took a hike to a rock overlooking the river, and I snapped photos along the way, a few of which were of Jodi. It was a glorious hike. We were up high overlooking the river and the gorge itself, and I know both of us felt a sense of peace. Later, as I looked through my photos, I found a photo of my wife with a smile that I haven’t seen since that last summer we had with our son: a pure, joyful smile. She stared and stared at the photo, incredulous that this happy woman could be her, now. I marveled too, wondering whether she had seen such an expression cross my own face. She had, she said. On that hike to the falls. It had been there. I was relieved to hear this, that I was still capable of feeling something good, relieved and also sad that feelings like this have been so fleeting, so few.

We hated to leave the Gorge with its own waterfalls and cliffs and glorious beauty born of destruction, but we did, and while the rest of our trip was perfectly pleasant, it lacked the majesty of the first week. Still, we were accompanied by a greater peace, and we carried that with us on the last legs of our journey, easily slipping into afternoons of fire-tending, whittling, tree-gazing, and more. On our way home, we stopped for a night in Eugene, Oregon, stayed in a hotel, cleaned ourselves up, and went for a stroll downtown the next morning to seek out coffee and books. We ducked into a shop filled with hand-crafted furniture made of slabs of wood, stumps, river stones, drift wood. We spoke with the artisan, an older man who sang along with a steady voice to the loud folk music as he dusted his furniture, and then looked around at his work, the tables, the tiny stools Caemon would have loved, and then the art on the walls. In the middle of a set of stairs, I stopped to admire one piece: the frame made of driftwood, four dried maple leaves stuck to a black canvas, and beneath them, written in a whimsical print,

“Your SOUL needs the WILD.” 

Tears were pouring down my face as I began to see this phrase everywhere, on tables, in frames, on bits of driftwood. I picked up one of these pieces of wood, carrying it with me through the store, my face still wet with salty acceptance, and as I looked at the artist, ready to pay him for the little piece of driftwood, he returned my gaze, eyes warm, and told me it was a gift.

Indeed it was.

By the end of our trip, I wasn’t ready to leave the wild. I had grown used to the unparalleled stillness of thin mountain air, to the rush of fierce waters, to the whistles of favorite birds, the crackling of fire. And, yes, I had even found peace with the jags of tears that came when seeing reminders of my boy and the hollowness that came from missing him. On each phase of the trip, there were countless reminders of Caemon, hundreds of times when my wife and I wondered, often aloud, What would Caemon have thought of this? Our answer was always the same: He would have loved it. And this seemed to give us permission to keep moving, to keep enjoying beauty and adventure, even if only for ourselves–because, ultimately, what else do we have? By the time we were seeing our last snow-capped mountains, our last lava flows and pumice deserts, I was already longing to be in the wild again, sad to say goodbye to the stillness I had so feared, for while my back was certainly finished with sleeping on the ground, my soul was ready for more beauty born of devastation, more quiet, more reminders that even in this life without Caemon, joy can grow.

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the magic of 8

From a pretty young age, Caemon enjoyed counting. At first, like any child, he wasn’t entirely sure of the order of numbers, but we could get him to count to three or four, and by the time he was two and half, he was at least counting to ten on his own with relative ease, and if he was feeling cooperative, even higher. But then Caemon’s sense of humor kicked in, and his counting became less predictable. He would be counting along with something in a book, “1…2…3…4…” and somewhere in the sequence, a little glint would appear in his eye, and regardless of where he was in the counting, he would insert, “Eight!” and then dissolve into uncontrollable giggles. There were times when he would count all the way to ten only to jump back to eight.

The number eight quickly became his favorite. When asked his age, Caemon would occasionally reply that he was eight. When asked how many of something he wanted, his sly smile would creep across his face, and he would respond “Eight!” Eight was his go-to number. It was his running joke, particularly with me. He and I would count teaspoons of vanilla or cups of flour, or we would count for the sake of counting, and he would never count seriously (unless he thought I wasn’t paying attention). He always jumped to eight. It made me laugh every time. It made him giggle his infectious, beautiful giggle. It’s no surprise that I came to love the number eight too. Sometimes, when counting with others who didn’t know the joke, he would pull his usual trick, familiar glint in his eyes, and he would always look over at me to make sure I heard the joke, even if the person present wasn’t aware that he really did know how to count.

I will admit that when I count things now, I sometimes shout “Eight!” in my mind to conjure up that silly boy who loved so much to laugh, to make his moms laugh.

After Caemon died, Jodi and I received a number of books and pamphlets on grief, many of which suggested that in the early stages of the grieving process, the bereaved often look for signs of their deceased loved ones; I was no exception. Throughout many of those early days, I would find myself looking for signs of my son, messages he might have left. Unfortunately, I’m also an insufferable skeptic, so the search was often a little frustrating. The morning after Caemon died, I awoke to find a bright green syringe cap in my bed, one of Caemon’s favorite types of caps (he collected various caps in the hospital and knew what each cap belonged to). I tried to explain it away, but ultimately couldn’t. I didn’t know how it got there, so I let myself have that one. My boy must have left it. In the months following, I would find piles of dimes around the house. I don’t know why they were always dimes, but they were. Jodi thought he was leaving these for me, so I agreed to believe, all the while wondering why there were so many dimes and how a spirit would go about moving such things and whether I was just getting sloppy about putting away my change. But in my heart, I wanted them to be from him, so they were, and I left them in their places (after all, I wouldn’t want him to think I didn’t appreciate the occasional thirty or forty cents). There have been a multitude of other signs, some of which my doubtful mind has explained away, some of which I’m still trying to figure out.

It should come as no surprise then that my latest wave of “signs” has been a series of eights. On the anniversary of Caemon’s death—or perhaps the next day, I walked up to our front door to find a purple foam 8 on our welcome mat. It was the sort of foam sticker that Caemon loved crafting with at the hospital playroom, and while chances are it came in on the shoe of a friend whose kids had been working on similar crafts, I couldn’t help but hope Caemon had left it for me just hours after I had wished I could feel him close, had actually wished that he would give me some indication that he was around somewhere. I brought it in and put in on his altar, and it inadvertently became the first of a growing collection.

Most of the eights I encounter aren’t concrete. I will pull out a handful of pretzels, and there will be eight (Not a message from beyond, I will tell myself). I’ll watch Jeopardy, and the answer to a question will be eight. An important event will fall on the eighth of the month. These eights are not signs, not communications, but I notice them, and more often than not, they trigger a replay of my son counting, eyes glinting, and his sweet voice exclaiming his favorite number.

But there are some other tangible eights. My latest findings were on the beach on the Mendocino Coast. Jodi and I were vacationing there, doing some beachcombing and thinking a lot about our son. Caemon loved the beach. He loved “playing buckets,” watching the waves, getting his toes wet, digging them in the sand. And he also loved his special jar full of treasures we had found together at various beaches throughout his short life—shells, rocks, sand, tiny sand dollars, even leaves. He would empty the jar on his bedroom floor and handle each item one at a time and then place them gently back in his jar.

On this particular day, as Jodi and I were remembering these magical times we spent as a family, and I was letting the tears fall freely, I looked down at a small pile of stones and shells to find none other than a small white 8 formed from the calcified case of a tube worm. I picked it up, felt a warm feeling wash over me, and placed it in my pocket, but not before I showed it to my wife, who smiled and noted that Caemon was leaving me a lot of eights lately. Another wave came in, and we ran away and then back to find what the ocean had churned up this time. I looked down, and there again was an 8. I gently pocketed the second eight, my tears and the spray of the surf leaving my face a salty mess.

Honestly, I don’t know that my son’s spirit has any control over shells I find on a beach or foam numbers that appear on my doormat—certainly not over answers on Jeopardy. But I know that the number eight has somehow turned sacred to me. It’s the number of my boy’s laughter, the code to his mischievous grin, and turned on its side, it is the symbol of the connection he and I will always share. Some people think their loved ones are around when they see feathers, others butterflies or rainbows. And we do this too—we think of Caemon when we see crocodiles and bees and the color orange. But my son and I, we have a running joke, even in the afterlife, and that has everything to do with the magical number eight.

You can witness Caemon’s counting joke in the video below (around 1:40–note the little look he gives after). Here, he is “reading” There’s a Wocket in My Pocket by Dr. Seuss to our beloved social worker Peggy. This reveals another of my favorite habits of Caemon’s: his memorization of all of his favorite books and his insistence on reading them to his loved ones. This video was taken a few weeks following his transplant when he was finally starting to feel more like himself again–and just a short time before his relapse.

for the want of a child

From Jodi:

People have been hesitant to ask, but they are curious: Do you think you’ll have another child? This may be the one area of my life where there is zero ambiguity. Yes. I can’t even imagine a meaningful life for myself absent children. Actually, I’m currently living that life, and it’s increasingly untenable. A well-meaning gentleman once advised me to use this time in my life to do something I’ve always wanted to do. It was a very masculine “seize the moment” sort of grief management. “I’ve always wanted to be a Mama.” I responded. It was my truth, spoken wistfully, honestly.

I have written many times that having a son made me outrageously happy, fulfilled, and hopeful, but he did not come to us quickly or easily; it took a lot of intention on our part to bring him here.  The void left by Caemon’s death is enormous, and I yearn for him constantly. I know and accept that he cannot be replaced, but my desire for a new baby is overwhelming. I want to be a mother again, to change diapers and tickle toes, sing songs and read Dr. Seuss books. I don’t need to run a marathon or hike scary mountains to prove that I am strong or that I fiercely love my fallen son. In fact, I don’t need to prove anything.

What I need is a healthy baby. I need a baby who will grow up, who will go to school, get crushes, learn to drive, graduate from high school, fall in love, have children, and not die until long after I am gone.

People have said, “But you have your teaching, and your students really value you,” or have questioned, “You don’t really think another baby will make everything better, do you?” I get it. I’m supposed to find meaning in other areas of my life and not place all my hopes and dreams on having a child. I’m supposed to “nurture myself” and reflect/meditate/grieve, etc. Here’s where I stand on that line of thought: Bullshit, okay. My students aren’t my children, not even close. Professional satisfaction does not translate to a wonderful personal life. And no, I don’t think having another child will make everything better, no more than I thought having a baby five years ago would make everything better, but I knew then, as I know now, that it does make many things better. Primarily, it makes me better.

Not everyone is destined to be a parent, and I hate that we still live in a culture where a woman’s worthiness is often linked directly to her status as a mother or not-a-mother. I know many people who have chosen not to have children of their own but remain devoted to the little ones in their lives. To be clear, I am not one of those people who are content being an auntie, honorary or otherwise. I have always wanted to be a Mama, a desire that solidified when Timaree and I moved in together and began discussing our dreams of family. I was anxious to get started right away, even though we were young, broke, and completely unprepared. Timaree wisely set a timeline of three years. That would give us time to graduate, establish our careers, and start a family. Three years turned to six, then nine, and despite years of dutifully treading water in the adjunct faculty pool, we were nowhere near financial stability let alone “established careers.”

 I remember that frustration of endless waiting, the growing intolerable ache, staring at little ones in stores and flirting with them in parks like some lonely weirdo. Then, in 2009 when I was 37 years old, eleven years after Timaree and I started planning a family, Caemon was born. That’s a long time to yearn so strongly, but so worth it once he was in our arms. I look at pictures of myself from that time and see, maybe for the first time, a whole woman, a happy woman. Caemon was the missing piece for me. Motherhood had changed me.  My teaching took on new meaning; I made new friends with other moms; Timaree and I worked on balancing parenting and our marriage in therapy because we wanted to be our best selves for our family.

The week before Caemon was diagnosed with leukemia, I turned 40. I never felt better. I was healthier, happier, and more professionally settled than ever. I was going to start taking Tai Chi classes and had fun plans to join a drum circle. Caemon had just started preschool, and Timaree was well on her way to becoming a certified doula. The Marston-Simmons family was thriving (If there is any regret or bitter pill, this may be it). We were doing great as a family and as individuals. We had arrived at a special time when we were ready to take on new challenges, begin new careers, and be creative and spontaneous. We could never have arrived there without Caemon, but six short months later that path we envisioned for our family would be completely obliterated, and with it, our hearts and souls, or so it seemed.

I know there’s a cliché that a wounded heart still beats, but I’ve found it can do a hell of a lot more. A shattered heart still yearns; it remembers; it feels joy and sorrow, perhaps not in equal amounts, and the joy, well, it’s muted, barely audible sometimes, but it’s there. It turns out, a broken heart still hopes. It hopes not to be broken anymore, and it hopes for what will heal it. When I hold my niece or any of the babies in my life, I feel a glimmer of it. When I allow myself to envision a future at all worth living, those visions always include a child. The want of a child cannot be replaced by personal or professional achievements, creative endeavors, or spiritual pursuits. The want of a child can only be fulfilled with a child. Everything else is just a distraction.