lessons of a lifetime

My Facebook feed is filled this week with children starting their first days of kindergarten and parents saddened to see their children growing up. There is talk in the air of tearful drop-offs and what to put in lunchboxes. I have seen this week parents with excited children in stores with lists of school supplies gathering crayons and scissors and paper, new school clothes, all the things one needs to have a successful start. They’re all nervous, excited. I stand back and watch or scroll through the pictures, my stomach knotted, my eyes welling, my heart aching. 

Caemon should have started school this year.

Caemon never really got a chance to go to school. No, that’s not true. Caemon went to exactly two days of preschool at a wonderful Montessori school near the university where we teach. He had been going with Jodi for a few weeks to become acclimated, and then the week before his diagnosis, we had two days of drop-offs where Caemon went to school with the other kids and without his moms. We each dropped him off once. We both got to pick him up. I remember watching him before he knew I had arrived, seeing him earnestly helping with lunch cleanup. He was cooperating with the other children, looking so grown up, so capable. Both days, he came home with art projects. He ate all of his lunch. He liked his teachers. He knew the other kids’ names and talked about them.

But then leukemia struck, and he never went back. 

There are many things my son never did, and this becomes more apparent the more we are around the children who were close to Caemon’s age. We have friends whose children began writing letters and soon words when they were three, and watching these children develop written language skills has been surprisingly emotional and bittersweet.

Caemon never learned to write. He didn’t write a single letter.

Caemon never learned to jump. 

He never wrote his name.

He never potty trained.

He never drew stick figures.

He never rode a bike.

And when I think about these classic milestones that Caemon didn’t cross, I sometimes start to worry that somehow, my brilliant boy was falling behind, that he didn’t accomplish what he should have by the age of three years and five months. It’s natural for parents to worry about such things, but it does so little good, particularly when the child is no longer here. Beyond the worry, though, is sadness, a devastation that my son died before he got a chance to do all of these things, before he got a chance to be a normal kid. 

The one message that keeps coming back to me each time I face this regret that he some how missed out is this: He didn’t have time. Caemon had other things to do.

And it’s true. My son didn’t go to school for more than a couple of days on his own, or jump, or write, or draw anything recognizable, but he did do so many things:

He learned how to give warm, strong hugs to people he loved. 

He learned to say, “Excuse me; I have something to say,” when the adults in the room droned on and on.

He learned to tell a story.

He learned to memorize book after book after book and recite them word for word.

He learned to swallow a pill with ice cream.

He learned to make ice cream.

He learned to blow kisses and to receive blown kisses and tuck them into his shirt.

He learned to use “who” and “whom” correctly (although we never once mentioned this or corrected him in this particular usage).

He learned how to help other children who were also sick.

He learned to gently pet a cat.

He learned to make muffins, how to level a teaspoon of baking soda, and that the best part of baking is licking the remaining batter from the bowl. He learned how much patience it takes to wait for anything delicious to bake, and that time always passes more quickly with snuggles and tickles. 

He learned to plant seeds and bulbs. He learned when to pick a tomato and a pea, and he learned just how delicious food is when we grow it and make it ourselves.

He learned to hug trees. 

He learned to program an IV pump, to flush a line, to administer chemotherapy, to ask for a bolus, to sit very still for procedures, to breathe through pain. 

He learned to say, “I love you” when he meant it.

This list could be miles long. Caemon learned so much in his short life. He was so busy doing what he wanted to do, learning what he was ready to learn, that no, he didn’t have time for jumping and writing, but he did have time for compassion, for communicating, for nurturing, for connecting with other people (and machines).

Caemon didn’t need to learn to write. He could speak (very well), and that is all he needed to communicate. He didn’t need to jump; he could run around just fine when he wanted to. He didn’t need school because his curiosity kept him learning constantly, yes, even in his hospital bed. 

Of course it hurts that we have no child’s lunchbox in our home, no first-day-of-school picture to post, no teacher conferences or back to school nights and no “To Mommy” notes scrawled in an early writer’s hand. It’s impossibly painful and poignant that the art Caemon made in his three years and five months is all we’ll ever get from him, that his favorite books sit dusty on a shelf. I can take some comfort, however, in knowing what he could do, what he did do, and knowing how much of himself he left behind. 

My son never wrote his name, but he touched the hearts of thousands of people, reminded us to live, taught us to love more and fear less. How could I ask more of him when he gave so very much?

Caemon's first day of preschool.

Caemon’s first day of preschool.

the boy and the turtle

I rarely dream about my son. I know people who regularly dream of their departed loved ones only to awaken disappointed, even devastated, that they were dreaming. I don’t typically dream about Caemon though. Oh, but I try. Most nights as I’m falling asleep, I ask to dream of him. I ask him to talk with me in his dreams. Sometimes I beg. Typically, however, my dreams are the typical sorting-out-my-day dreams, and rarely do they contain even a glimpse of my precious boy. 

Needless to say, I was surprised when a few weeks ago, I had a very vivid dream featuring Caemon. It was the sort of dream from which I did not want to awaken. 

It all started with me seeing Caemon on a bus. It was a crowded city bus, in a city not unlike San Francisco. I could see him sitting in a seat, gazing intently forward with a serious and slightly worried expression on his face. His brow was furrowed. He was traveling alone, but there were many other passengers on the bus. He was older, taller, maybe about five. He had his glorious blonde hair. I knew he was going to some sort of music or art class in this unknown city where were apparently living.

As I watched my son leave on this bus, panic struck me. I was terrified. What had I done sending my small child away on a city bus without an adult? Why hadn’t I thought to take him to his class myself? How would he know where to go? How would I know if he arrived? What kind of mother was I? I spent some time in this agonizing state before the dream jumped into the next day. My son was there, and I had opted to accompany him on his bus trip. 

When we exited the bus at its destination, we were in a strange industrial area with vacant lots, warehouses, and construction equipment. It was eerie, quiet. Caemon held my hand as we walked through this space for what seemed like miles, and I wondered again how he had known where to go and why I would have let him travel like this on his own. Soon, we had left the industrial area, and we were on a quaint street with a variety of storefronts. Caemon entered one of these, taking me with him. We ascended some stairs, and I remember dark woods, jewel toned cushions, and a lovely homey feeling. We seemed to have entered what was Caemon’s school, and he was showing me around, pointing things out.

The last bit I remember is that Caemon stopped to show me a plush turtle. He picked it up and told me, “This is the turtle I tell me feelings to.” I was utterly touched. He was worried that if he were to go somewhere else, he wouldn’t have the turtle. I was so comforted that he had such a lovely place to be and even felt reassured that I had let him travel on his own because he was a bigger boy, and he could handle it. And he had this lovely feelings turtle.

I woke up at the end of the turtle scene, and there was that feeling I had heard about: utter disappointment that I had been dreaming. But there was another feeling lingering too, a feeling of dread of panic. It stuck with me the entire day.

I had let my son go off on his own. I watched him go. I let him go. 

One doesn’t need a psychology degree to see where my unconscious was going with this, and this strange feeling lingered, this feeling of seeing him looking concerned and serious and noticeably older, this feeling of worry. And I think there is a part of me that feels like I really did see him.

In moments like this, I am always quick to mention that I am a skeptic. Perhaps I should call myself a hopeful skeptic. I want to believe that my son visited me in a dream. I want to believe he is communicating with me, telling me that while I had to let him go off on his own, where he has gone is pretty great, that he has navigated even scary industrial places just fine on his own, and, yes, I even want to believe there’s a stuffed turtle to whom he can tell his feelings. Such beliefs might be comforting. 

I want to believe this because in all honesty, I don’t know where my son is.

I have so many different foundations of belief, but mostly, I feel like I simply lost him. There was this feeling of dread for months after he died that I had carelessly left him behind somewhere, that maybe he was riding some public bus with malicious strangers or wandering streets or sitting alone at a park. But I didn’t know. I knew where his body went, but I didn’t know where he went. That my psyche would try to grasp this in my sleep would be no surprise to me, but I still don’t know whether that is the whole story.

Anytime I remember this dream, I come back to this feeling, but I also come back to the turtle. A few days after I had the dream, I told my therapist about it. She smiled and thought maybe I needed to get a stuffed turtle. I agreed and then remembered that Caemon had one, one we had gotten for him at an aquarium when he was a baby. The turtle, while not a favorite of his “Fellas” (the name we all used for his stuffed creatures), came to his tea parties and participated in his “Ten in the Bed” game of throwing animals out of his bed at his moms. I was so comforted to remember the turtle. Maybe I would pull it out, share a few feelings with it. If anything, maybe it would help me remember the dream and what a five-year-old Caemon might look like.

About a week after I had the dream, Jodi and I went to visit a friend whose son Orion has leukemia (AML). He was being treated at UCSF, and we wanted to offer our friend some support after they had received some hard news. Her son was battling a rare infection, and the doctors weren’t sure he was going to be able to go to bone marrow transplant. When we arrived at the hospital, our friend let us know that Orion was up for visitors. We had yet to meet him, and had wanted to for some time, so we both took deep breaths, boarded the all-too familiar elevators up to 7-Long, and prepared to enter the floor where Caemon had lived for nearly six months. Soon, we were entering Orion’s room, which had been one of Caemon’s several rooms as well. And there was Orion, a lovely, bald, blue-eyed, six-foot-something boy. We chatted with him and his family for awhile. Sometimes I would just look at Orion, send him some love, and admire what a strong spirit he has. After some time, from under his blankets, this fifteen-year-old pulled a stuffed animal, and as he nestled it into his neck, my breath caught.

It was a turtle. 

My head was swirling with Caemon and the dream and so many feelings. It took me some time to compose myself, but after a few minutes, I asked Orion about the turtle. A friend had given it to him. He found it comforting. As we spoke, he hugged the turtle to his neck, stroked it, rested his head on it when he felt tired. 

I didn’t know what this meant. I still don’t. But I know Orion has a turtle, and I know it makes him feel better. 

A week or more later, I received a message from Orion’s mom. She wrote that Orion had chosen to spend the rest of his days at home, such a courageous and beautiful and heartbreaking decision. His infection was preventing him from going to transplant. His leukemia wasn’t responding to chemotherapy. He just wanted time with his family and friends, time to be a kid before, in his words, he was to go back to nature.

My wife was not in the room when I received this news, but a few moments later, she appeared, and I told her. After a few moments of sitting with this, Jodi asked me, “Do you know what I was doing just now?”

As I had been reading the email, Jodi had been in the garage. She noticed that some boxes were piled on some of Caemon’s things, and she became upset by that, so began clearing them only to find his box of stuffed animals. When she opened the box, sitting on the top was the turtle. Just moments before she came downstairs and heard this news, she had pulled the turtle out, taken it to our room, and placed it on my pillow.

I know I wondered in that moment if Caemon was going to help, if he was here to meet a friend and usher him on to the next plane of existence. I won’t pretend to know what forces are at work here. I don’t know whether my son is hanging out with this other amazing cancer warrior or whether they just have a shared affinity for stuffed turtles. I don’t know if he’s trying to tell us he’s around, that he wants to help out, or whether I’m just looking for signs. I don’t know. All I know is that this happened and that I can’t stop thinking about it and that I cry tears of relief when I do.

Yesterday, I received in the mail a sweet plush turtle from a friend wish whom I shared this story. I held it in the crook of my neck. I thought of my son, and I thought of Orion, and my heart filled with love. I don’t need anymore meaning than that.



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.

my golden-haired muse

Tomorrow, I am going to a conference for bloggers, a conference held by BlogHer*, a large blogging organization who chose to nominate me as one of its Voices of the Year for my post “I Had a Boy.” This is an unexpected and huge honor, something that has humbled me to my bones. But it has triggered unbelievably complex emotions too.

As writers, we all want our voices to be heard. As the mother of a child gone too soon, I have wanted so badly for his story to be read over and over by as many people as possible because if they do, he won’t be forgotten. But I can’t help but be saddened that for me to find my voice, my boy had to get sick. For me to gain this recognition, my boy had to die.

My wife is the first to remind me that I have been writing about Caemon since we started dreaming of having a child. I wrote about the long road to getting pregnant. I chronicled every joyful moment of my pregnancy with him. I wrote a three-installment, eight-page story of his birth. And once he was here, I wrote and wrote and wrote about the wonders and trials and triumphs of mothering a vibrant little crocodile.

And when he got sick, when our lives suddenly turned from trying to feed a picky two-year-old to consoling him through needle pokes and dressing changes, I took to writing through my fear, escaping the hospital through my words. When he died, this was sometimes the only place I felt I could turn to handle my grief, a way I could feel close to him and continue loving him because I have always, always written about my beloved son.

I think I have been surprised that through the terror of his illness and the agony of his death, I have done some of the best writing of my life–but I shouldn’t be. What I share on the page comes from the deepest of places. It is honest. It is raw. It is real. In fact, it is more honest and raw and real than anything I have written until now.

It is sacred.

I would never have chosen this path. I would give up every kind comment, every new reader, every mention on another webpage to have my son in my arms again, but that is not the road I am to take. I do, however, get to be a writer, and I get to share the most beautiful story, memories of a magical child gone too soon.

Tomorrow, I will go to this conference with my golden-haired muse tucked in my heart, and when I do, I will honor this precious gift he left me: a voice borne of hope and fear and love and heartbreak, the voice of a mother’s heart.



*If you are attending BlogHer, I will be part of a discussion at the WordPress booth on Saturday at 3:30. I would love to see you there.


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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memory keeper

I remember.

I remember when I was pregnant, when you would roll around so that it felt like my organs must be moving too, and how you would stick your foot so far out that we could often see your heel, a little knob on my belly, and how when your Mama put her hand on my belly, you would kick, kick, kick with excitement.

I remember when you were born, after such a long, long labor, and you were finally here and you were placed on my belly, and I recognized you. I knew you. I was so, so glad to see you.

I remember marveling at your hands and feet. I had expected them to be so small, but for a newborn, you had gigantic hands, so meaty, so substantial, and your grasp so steady. We had a sense you would be a big guy.

I remember your gaze. From the day you were born, you would lift your head to stare into people’s eyes, and when you did, we were all sure you saw our very souls.

I remember as you grew, that you would become frustrated with new skills. When you wanted to crawl, you would cry as you scooted along on your belly. We wanted to rescue you, but we also knew you had to work it out. And you did.

I remember your wide, open-mouthed, baby drool kisses you would plant on my cheek, my eyes, my nose.

I remember your baby bird mouth and your wide-soft eyes exuding pure love when you nursed.

I remember how early you spoke, how we knew your language, how you would request the book Bye-Bye Big Bad Bully Bug when you were just six months old, saying ,”B-B-B-B-B!” Or how you would call Mama “Mama” and me, “Mamanana” because “Nana” was your word for nursing.

I remember the first time we put you on a swing how timid we were, until we saw Swing Face, an expression of such joy, I thought you would burst.  

I remember that as soon as you were mobile, you wanted to help. You would empty the dryer as we did laundry. You would try to empty the dishwasher. You cooked on the kitchen floor. And when you finally learned to walk at seventeen months, it was because you wanted to put your own diapers away.

I remember when you began to request music. You would ask for “La-la-las” for Van Morrison, or “Oh-oh-ohs” for Jack Johnson. By the age of two, you could also tell me, “No Enya!” if you heard her music and began to feel sleepy.

I remember when you wanted to start sleeping on my head. You would lay your head on mine as if it was the comfiest spot in the world. It was at once hilarious and sweet and frustrating to a mom who couldn’t get enough rest.

I remember how you would mimic each of the cats’ meows with amazing precision. I also remember how they would make you erupt into uncontrollable laughter when they pounced or wrestled or reached up to tap your leg.

I remember when you helped plant peas and tomatoes. You weren’t even two. You pushed the seeds deep into the soil. You patted the dirt around the tomato plants. You watched them grow. When the food began growing on the plants, you would beg for “one tomato” or “one pea.” Mama taught you the right shade of orange to know when the tomatoes were ripe, and once you picked and ate all of those, you chose the ones with the faintest blush because you just couldn’t get enough.

I remember how terrified you were of the vacuum cleaner and the day you decided it was your friend and how your baby sitter brought it into the living room so that you could help it take a nap. I remember you in your special vacuum hat that covered your ears to make hanging out with your new friend a little more bearable.

I remember when we had a pellet stove, and you would help me carry pellets in from the garage, how you would help me fill the hopper and place just the right amount of pellets into the stove, how you would very cautiously sit back behind me while I lit the fire, and how, mesmerized, you would sit on my lap gazing at the fire.

I remember when we would make muffins, how you knew which canister had the whole wheat flour, which had the oat bran. You knew which ingredients we were missing. You knew how to level the baking powder, how to sprinkle in a pinch of salt just so, and you would race to eat as much batter as you could before we got them into the oven. Once they were in, you would rest on my lap on the kitchen floor, and we  would watch them bake. “Pretty!” you would say. And later, “I want the muffins to be done now, Mommy!” When they were done, they were all you would eat for the rest of the day.

I remember the day when winter seemed to be clearing, and we went for our first stroller walk in a long time. You told me, “It’s so nice to go for a walk, Mommy.” We went to the park, and you wanted to swing and swing, and I was happy to oblige, my heart swelling, tears rolling down my face because these were the moments I longed for before you came along.

I remember your special Fridays with Mama, how the two of you would venture out into the world for an adventure–maybe to the farm, maybe to the library, maybe to a park–and you would come back sleepy, happy, connected.

I remember when you and Mama came up with the game Big Mess, a giant obstacle course in the living room, and how we would all collapse into a pile of pillows.

I remember that from the time you were a baby to when you were a bigger boy, Mama or I would dance you to sleep in the living room, your head sinking into our shoulders, your body growing heavy with sleep. You always loved dancing.

I remember our first time camping, how amazed you were that we had a giant tent like the one in your room, how your first taste of marshmallow was a thing of beauty. Later, when you wanted another marshmallow, and I said we only had them when we had a campfire, you informed us you would make a fire, and you helped Mama gather the wood you would need because you were a problem solver.

I remember when you first saw the redwoods, you hugged them. You reached high in the air and offered them a bite of your sandwich. But you always loved trees. Your Grandma would take you outside when you were a baby, and you would touch all of the trees. When we would go for hikes, you always chose trees to embrace.

I remember Uncle Nate introduced you to dancing rocks that skipped across the river and how dreamy and peaceful you looked in his arms when he took you out on the Van Duzen in a raft and you drifted around.

I remember your first trip to the Exploratorium, how filled with wonder you were the whole day, and how when we left, for the next few days, you told us, “I want to go to the Exploratorium forever!

I remember our big road trip with Grandma and Mama and how when Grandpa spread a map out on the floor, and got down on his hands and knees to take a look, you just had to do the same. I remember how fun you were in the car, how with each new hotel room, you would check out the amenities, try to make a cup of coffee. And I remember how at the San Diego Zoo, you refused to look at most of the animals. You would turn your head the other way, saying, “I won’t!” You didn’t feel well that day.

I remember at the Grand Canyon, you got to ride like a big boy on the shuttle bus, sitting on a seat next to Mama. When we were at the Canyon itself, you wanted to know where it was. It was hard to grasp, I imagine, that that big wide open space was what we had come to see, so instead, you remembered the hand dryer in the bathroom. Whenever someone would ask us about our trip, you would tell them about that dryer.

I remember the day we found out you had leukemia, how brave you were for your pokes, and then in the emergency room, and on the ambulance, how you held the mask for your breathing treatment in the ambulance just right and how the paramedic was so impressed while I sat there oddly proud and completely terrified.

I remember hospital Caemon emerging, a boy who, with the help of the right people and toys and medical supplies would make the most of his incredibly shrinking world.

I remember the day after you got out of the PICU, and we played some of your favorite music from home, and we danced around your room with you, how you held your Mama tight around her neck and told her how happy you were.

I remember what it was like when we went home for our few short breaks, how you would walk from room to room, making sure everything was there, how you would chase the cats, pull their tails, run down the hall and slam doors, cook up treats in your little kitchen and embrace what it meant to be home.

I remember your first hospital haircut, when I shaved your head in anticipation of your hair falling out. That was the day you got to wear your scrubs for the first time, and you proudly walked down the hospital hallway, talking to your nurses. From then on, you most often introduced yourself as Nurse Caemon.

I remember your smooth, bald head, how perfect it was, how beautiful you were, whether you had your soft platinum locks or not.

I remember on one trip home from the hospital, you were up so very late, and your Mama asked you, “Why are you still awake?” And you smiled your sly grin and said, “Because I’m a clever, clever boy!”

I remember when your eyelashes started to fall out. I remember the last one. I have a photo of it, still attached to your lid. I also remember when they started to grow back, not long before you died.

I remember your arms around my neck, patting my back. If you felt I was sad,  you would tell me, “Mommy’s sad. It’s okay, Mommy. Come here. I will comfort you.” And you always did.

I remember lying on your hospital bed in the crook of your arm. You were so very sick, but you wanted us right there with you.

I remember on your last night that you told your Mama and I each, separately, that you loved us.

I remember you, Caemon. I remember more than I could ever write.  I remember that you were a real boy with his own thoughts and ideas and creations and passions. But most of all, I remember how when you were in my arms, I felt a wholeness that I have not known before or since.

And I will never, ever, ever forget.

Telling Caemon’s Story

From Jodi:

Part of our duty as Caemon’s surviving mothers is to tell his story because he cannot. His was a hero’s journey fraught with fear, uncertainty, dangerous trials, and ultimately, tragedy.  Viewed through the lens of Joseph Campbell’s work, our boy’s life and death are even more remarkable. For the uninitiated, Campbell identified several stages any mythic hero goes through, beginning with a call to the underworld. In Caemon’s journey, his call came when he was diagnosed with leukemia, and suddenly, his quiet, safe world, so carefully protected by his mothers, was upended. In its place, the underworld of the pediatric cancer floor became his new home (and ours). Once there, Caemon would face many fears; he gave them names and treated them with love; he made allies along the way, other warriors who taught him skills and gave him the battle armor he would need to fight his arch nemesis: leukemia.

Throughout his perilous journey, we have written and spoken about him, about his courage, his humor, his incredible intelligence. We do this for a number of reasons: we tell his story because it makes us feel closer to him; because it helps us remember the details of his personality; it reminds us to stay strong and keep living; it honors him, and in some small way, it heals us.

But we are not finished. The final stage of his journey has not been completed:

RETURN WITH THE ELIXIR.  The hero returns home or continues the journey, bearing some element of the treasure that has the power to transform the world as the hero has been transformed.

When a hero dies before completing the journey, those left behind are duty-bound to return to the Ordinary World and share the elixir. I wish we had a magic elixir from the underworld, a potion that would prevent children from dying of cancer, but that’s not what we return with, at least not yet. We continue to fight on many fronts. What we bring back from Caemon’s Hero’s Journey is a treasure of lessons and wisdom from a three-and-a-half-year-old warrior/hero. We continue to learn them and share them as we trudge through our own journeys. But has Caemon’s elixir of lessons and wisdom “transformed the world”? I think so; his legacy is continually unfolding all around us. Just last week we learned that a supporter ran the Boston Marathon in Caemon’s honor. We saw his picture on a news broadcast about a local bone marrow drive. People privately write to tell us the many ways his journey has transformed their lives. It seems that our son has moved into the realm of myth: the little boy nurse who liked to be called Croc lives on in stories, just as all great mythic heroes ultimately do.

The story that is being written is incomplete, however, without an understanding of how Caemon has transformed the Ordinary World. We are asking people to send us their stories of how their lives, work, relationships with family, etc. have been altered or impacted because of Caemon’s story. Those of you who have been inspired by him are the reason we keep writing, speaking, and sharing his journey. Now we want you to share yours, publicly. Email us with your stories. We’ll share them on the blog and watch his legacy grow.

To email us your story: cisforcrocodile@gmail.com

For more on the Hero’s Journey: http://www.thewritersjourney.com/hero’s_journey.htm

Please let us know if we can use your name (or any part of it) and city/state/country.