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:

For more on the Hero’s Journey:’s_journey.htm

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

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 IMG_9848crafting 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 IMG_9849family, 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 washIMG_9850 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

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.

Mama and Caemon

the return

A post from Jodi:

Last April Timaree and I attended a bereavement camp for parents who have lost children to cancer. We were only three months out from Caemon’s death, so I spent a lot of time crying. Interestingly, one mom was fifteen years out from her daughter’s death, and she cried a lot too; most of us did, really, even the couple with the t-shirts that read “One Rule: No Tears”. This trip would be my first lesson in the grieving process and the journey toward healing. One couple who had come from Mexico with their daughter to treat her cancer ended up staying and making a life in America with their surviving son, a strapping boy who tenderly cares for his parents. The mother spoke so lovingly of her daughter who had passed away in 2011; the love she had for her daughter emanated powerfully in the room as she told stories of her compassion for the younger children in the hospital. I was astounded to hear how she, the mom, volunteers in the very hospital where her daughter died, sitting with patients in the same rooms where her daughter was treated. I couldn’t imagine what that must be like for her, but she sees this as the work that best honors her beloved daughter, and despite painful memories, she soldiers on in her memory. At one point in our group session, she reached out to me, grabbed my hand and told me that it would be okay, that my son was with me. Her compassion was enormous.

But when you are broken, really truly shattered, like I have been, there is nothing to give to anyone. The idea of going back to the hospital where Caemon lived and died, well, it was upsetting. So I have been avoiding it, and although we have been near the hospital, even visiting the lab where his oncologist’s office is located, we have not ventured inside the hospital. Why would we? As we have said, a pediatric oncology floor is the last place any parent wants to be. It turns out to be the last place a teacher wants to be as well.

One of my SSU students has recently been diagnosed with leukemia and is being treated at the same hospital, on the same floor as Caemon. Unfortunately, while this is not the first student I’ve had who has been diagnosed with cancer, she is the first student since Caemon died. It hit hard; I dropped an arsenal of F bombs. I was angry. I wanted to help, of course, and so I reached out, offering to come see her if she wanted a visit. She was thrilled that I was coming, but I was nervous. Would I be able to subjugate the grieving mother in order to be the reassuring and compassionate adult my student needed?

Timaree helped me gather a few items for a care package: blankets, cookies, magazines, croc tattoos, but she would not be accompanying me on this journey.  This is my student, and we determined that it would be unnecessary and uncomfortable for Timaree to come. Luckily I am blessed to be friends with one of the nurses on that floor, and she offered to go with me.

As we crossed the street from the parking garage and entered the Emergency Bay as I had done so many times before on my way back to Caemon, I felt the weight of the place again and turned serious. Saturdays are quieter, less hectic, so we quickly made our way down the long hall toward the elevators.

Suddenly, it’s Halloween 2012, and Caemon is dressed in his full nurses’ uniform, walking down this hall, and an ER nurse, clearly smitten with this handsome young nurse, asks him if he wants to come to work with her. He turns to follow her, and we quickly intervene, reminding him he already has a job up on the seventh floor!

I was grateful it was a Saturday and that I wouldn’t have to share the elevator with 30 people. I looked down at my “Visitor” sticker, not the “Parent” one I wore before, and it was the visual reminder I needed to pull me back to the present. I used the ride up to control my breathing and steeled myself for an onslaught of what, I didn’t know. The doors opened, immediately revealing the pink Pac Man tile décor that is unique to Seven. We whisked through the double doors, and I was back in a world I cannot seem to escape. There were those words: “Pediatric Oncology and Bone Marrow Transplant Unit.”

I pointed to a room as we passed, “That’s the room where Caemon was diagnosed.”

For a moment I see Timaree sitting on the side of the bed, Caemon drooped in her arms as a nurse works around them to take his vitals.

I approached the nurses’ station and was warmly greeted by the RN who was my student’s nurse that day. I gave a nod to my off-duty nurse friend and followed the other to that very room in which my son was diagnosed. It wouldn’t be until later that night that I would remember being crumpled on the floor of that room with my wife, crying in despair and disbelief that our beautiful son was so sick.

I greeted my student, offered a hug, and we sat quietly as her vitals were taken. Mama Jodi and Teacher Jodi merged. I gave her the care package and helped her unwrap her zebra print plush throw, so much cozier than hospital linens, and I asked after her mom. We took a walk, chatted, and I pointed things out to her as we walked. “Hey, did you know you could bring food from home and freeze it in there?” I asked. She told me about her mom’s posole.

Without thought, we rode the elevator down to the sixth floor, which is as far as she is allowed to go, and I showed her a place her family could go if they needed to use a computer or grab a cup of tea. It was closed, of course, so we kept walking. I caught sight of the ramp that leads to a sitting area outside, but it was raining so we kept walking.

Caemon is in his yellow and red car and we’re racing down the ramp, bumping into walls and laughing. He wants to do it again and again.

We walked past the playroom where Caemon danced and played, past the PICU where he was taken when he coded on his last morning, past the waiting room where we were told he wasn’t going to survive. It was quiet, unpopulated. I suggested we go back up to the seventh floor where I could procure her a cup of tea. We sat in the waiting room admiring a large tropical fish tank, and she said, “I think after all of this, I want to do something in the medical field.” I nodded approvingly, not surprised that she had been inspired by her medical care just as my son had been.

She asked if I would come back and bring her some books, and I offered to talk to her mother if she thought that would be beneficial. After an hour or so, I left to say my goodbyes and retrieve my off-duty nurse friend who had dragged herself and her newborn out in the middle of a rainstorm just to be by my side. I swear these people are real and not literary embellishments. As I was saying my final goodbye, we shared a quick memory of Caemon in the hallway searching for the otoscope (a device for peering into the ear canal), which lives on a rolling cart and is the only of its kind on the floor. Caemon had fallen in love with it and wanted to find it, but it was an elusive hunt.

“Have you seen Otoscope?” he asks nurse after nurse. They all tell him that they will be on the lookout for it, but Caemon is determined. He stands in front of the locked treatment room: “He’s in there. Go get him” he orders, except I don’t have the code. Finally, Nurse Amy tells him that she will find Otoscope and bring it to his room. He complies. He knows she won’t lie to him, and he spends the next hour or so eagerly anticipating the visit from this rare device. His smile when she rolls in with Otoscope is luminescent.

The mother from bereavement camp was right when she said Caemon would always be with me; he was with me that day every step of the way, present in the people whose lives he had touched, present in the memories of his life there, present in me. I don’t need to relive the code, the trip to the PICU, the devastation of walking out of that hospital the last time without him. I already survived it once. Because he is always with me, I can visit my student, speak with her mother, and offer some support without internalizing their tragedy or projecting my own onto them. I’d call that progress.