Category Archives: memories

four augusts

It’s hard to go much of anywhere on social media this month without seeing parents rejoicing at the end of summer and the start of a new school year–that time of year when parents get more freedom and kids are the responsibility of some other adult for at least a few hours a day. Advertisements on television, mom blogs, displays in stores all point to the same euphoric feeling of relief that parents have this time of year, counting down the days until school starts. The culminating event of all this build-up is the iconic first-day of school photo, kids all decked out in their new-school-year finery captioned by their parents’ lament: “I wish she would just stop growing.” August on social media is a minefield for the bereaved parent.

All that festive back-to-school clamor hurts for fairly obvious reasons, but for me personally, it also heralds the beginning of the darker months, the time when, four years ago, all of the outside world became a jumble of voices and lights, and I focused everything I had on saving my son, only to find that these were the last months I would share with him.

My wife’s birthday was a week ago. It was a lovely day of celebrating, but that day too is marred by the beginning of the end. Four years ago on her birthday, we had our last family photos taken–the iconic photos that have become Caemon the Legend, Caemon the Hero, Caemon, the Beautiful Boy Who Had Cancer, Caemon the Poster Child for JMML. Exactly one week following that day, August 21st, was D-Day: the anniversary of our initiation into the cancer club.

In fact, four years ago at this very moment,  Jodi and I were sitting in the hallway of the children’s oncology unit at UCSF, talking to a hematology fellow who would confirm that our son had some form of leukemia. I remember shaking so hard I could hardly sign the consent forms for the studies he was entering. It was just the beginning.

August is the keeper of so many beginnings. It holds Caemon’s first day of preschool, his first camping trip in the redwoods, but after August 21st, it held his first stay in the PICU, his first chemo, his first oncologist. After February, this is the month I dread the most. One might think, four years on now, that I should be getting over the diagnosis, that I should learn to move on, that I should place all my focus on my healthy baby girl and teaching and new hopes and dreams and somehow forget. But how can I when it’s August?

It’s August, and before I know it it will be September and his birthday, October and November and the memories of the hospital, December and his bone marrow transplant, January and his relapse, and February, the end–the end of my beautiful Caemon.

It’s August, and I don’t have my boy who should be going to school, and I am not rejoicing. It’s August, and my son did stop growing. August is just too heavy to forget.

The coming months are the hard ones for me. They bring with them so many difficult memories, and while my daughter and my imaginings of her future do certainly provide a counterweight–even respite–to some of that pain, this time of year will forever be changed for me. There will never be a back-to-school season when I don’t wonder what a seven-year-old or thirteen-year-old or college freshman Caemon might have been like. There will never be a Halloween when I don’t think of his return to the hospital in his nurse costume or a Winter Solstice when I don’t think of his transplant.

And so, with August 21st, I enter the season of missing my son more poignantly. Another year has passed since the beginning of his end, four years of Augusts without him.

 

the beauty of bald

In eleven days’ time, I will be waking up bald in a Las Vegas hotel room. While that may sound a bit like I’m about to be the victim of some urban legend, this will, in fact, be by choice. I will be shaving my head with a group I have wanted to join for three years now: The 46 Mommas. This is a group of cancer moms who raise significant amounts of money for St. Baldrick’s through annual head shaving events. They are fierce and brave and strong and singularly motivated to end the disease that has impacted their children and far too many others. They are clearly my tribe.

No mother ever expects her own child will become that beautifully bald cancer poster kid. I certainly didn’t. I couldn’t imagine my son without his hair, but that baldness became our reality. Caemon was that child. He still is.

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The night of Caemon’s diagnosis, that first night we ever spent in a children’s hospital, I remember the hematologist complimenting Caemon’s hair. He couldn’t get over how beautiful it was. And it was beautiful–like corn silk kissed with sunshine. But I also remember wanting to tell this young doctor that he couldn’t have it, as if my protective mama bear instincts were any match for chemotherapy. I  remember that night telling my brother that as soon as Caemon’s hair started falling out, I would shave my head. He agreed that he would too. I felt a tiny spark of power in that decision on a day when I had never felt more powerless. But the head-shaving was not to be.

When Caemon’s hair did start falling out, he had what we called his “hospital haircut.” We opted to shave his head to keep the falling hair from annoying him. I offered at this time to shave my head too. After all, we had the clippers in hand, and I was ready. When I said, “Caemon, what if Mommy has a hospital haircut too?” He yelled at me. “No! I don’t want Mommy to have a hospital haircut!” I was a little surprised, but then I shouldn’t have been. Caemon had a thing about wanting me to look a certain way. There were days when I would come in from staying the night at Family House, and he would point at my various accessories: “Mommy! Take off your scarf and your headband and your jacket and your purse and your glasses!” I think he wanted me to look simple. like I did on our days at home, maybe even disheveled. I think he needed the comfort of a mom who wasn’t going to change in the midst of a world that was so unpredictable; the only constant there seemed to be change. And a mommy with a shaved head was just too much. He needed normalcy. His own freshly shorn head was too much already.

So I didn’t shave my head, but I did watch as my son’s IMG_8023haircut became less a haircut and more the signature look of a child with cancer. At first he still had a bit of stubble, his beautiful widow’s peak still framing his face. He had eyebrows and his glorious eyelashes too. But after a couple of months of his most intense chemo regimens, all of his hair was gone. He looked like a cancer patient.

Caemon didn’t like being bald. He didn’t recognize IMG_8402himself. One of his favorite nurses was a brilliant caricaturist, and he drew Caemon a portrait one night, complete with his bald head. Caemon, in a rare turn from his usual polite self, threw the picture and had a fairly epic meltdown. Later, we gathered that he didn’t like himself bald, and he confirmed this. (This same nurse would later draw a picture of Caemon with a full head of hair in our guest book at his memorial service.) There were times Caemon wanted me to take photos of him with some of the fancy machines that visited his room, and he insisted on putting a hat on for the picture. He needed so desperately to  look more like himself.

I would think abouscrubst the other kids we encountered in the hospital halls, the teenaged girls who had a much more established physical identity than my three-year-old son, and I know it had to be painful at times for them not to resemble their former selves. But there was a sense of solidarity around it too. When Caemon did finally get his first hospital haircut, we took him for a walk around the halls, and he saw other kids bald like him, and he would comment on their hospital haircuts. Some of his favorite nurses also sported bald heads, and he began to see them as kindrid spirits, asking if he could touch their heads. He needed that baldness to have meaning–not to represent illness and helplessness, but instead to symbolize something more important. His bald nurses were in control, so maybe his baldness could be power. When those nurses were in the room, it certainly was.

But baldness was still not acceptable for Mommy. I broached the subject of shaving my head more than once throughout Caemon’s treatment, thinking he might change his mind, and, selfishly, thinking it would be so much easier for my life in the hospital. He was always just as adamant that I keep my hair, and I respected that.

As strange as it may seem, after Caemon died, one of the clearest physical memories I had was of his bald head. It still is the most visceral, the most easy to recall. I kissed and stroked and held his head hundreds–maybe thousands of times–his scalp smooth, but slightly sticky. I can recall that sensation more easily than I can the feeling of his little body wrapped around me in a hug. It is at once comforting and heartbreaking.

So now, as I prepare myself for this shave, I find myself thinking that he might be mad at me if he were here. I try to imagine what an almost-seven-year-old Caemon would think. Maybe he would have gone with me. Maybe he would have shaved his own head too. Maybe, instead of being mad, he would have been proud of me. All I have are maybes, and then the memory of his protests. But I am still shaving in my son’s name, in his memory. I will say a quick hello to the clippers, maybe give them a little pat like Caemon used to do. And when I am bald, I will admire that my head is shaped like his was, and that my ears stick out like his did. And in my heart, I will stroke his sweet pate, give him a kiss, and remember why work like this must be done.

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Now, I humbly ask for you to support me in my efforts to raise some serious cash to help beat childhood cancer. St. Baldrick’s provides more funding to childhood cancer research than any other private organization. They directly fund the work Caemon’s doctors are doing with his cells, and they are committed to putting an end to childhood cancer. On a very special note, any donations to my fundraising efforts will funnel directly to Caemon’s Hero Fund for JMML research grants, and even the tiniest donation makes a significant impact. I thank you for helping me make my first shave with the 46 Mommas fruitful and memorable. To donate, you can click the link below: Timaree Marston’s 46 Mommas Fundraising Page

 

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the boy behind the glass

 

 

IMG_0017Recently, 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. IMG_0019

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.IMG_0015

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 IMG_1099the 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.J17J6

 

 

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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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.

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.

sacred

Yesterday, Jodi and I attended a wonderful writing retreat focused on grief and healing. A good deal of writing came out of the day, but this poem by Jodi is one piece I will treasure forever. With her permission, of course, I share with you Jodi’s poem, “Sacred.”

Sacred 

Drawing your bath after our family dinner—
Not too hot and not too deep—is my sacred duty.
We will spend the next half hour building and destroying
block towers on the side of the tub;
hiding rubber duckies under colorful, plastic nesting cups;
transferring water from one container to another;
and flinging wet washcloths at the tiled wall (at just the right
angle and velocity) to see if they’ll stick.
This is our sacred ritual.

Before you walked, I picked up your slippery, warm body,
wrapped you in a hooded towel, and carried you to the bed to be diapered.
Looking down at you as you kick, kick, kicked
inside your sleep sack,
there was no past or future,
only the simple perfection of “now.”

As a bigger boy, you were eager
to exit the tub by your own self
and skip ahead to picking your bedtime stories.
Once you hurried a little too much and slipped crossing the hall.
You were more careful after that.

The song Mommy and I made up about frog feet, the one with the jazz clap at the end—
I remember how you always nailed that last whispered “yeeeeaaaaah,”
like you’d been doing it for decades in smoky nightclubs.
It was cool, man, that you liked jazz.

In the hospital you weren’t allowed to have a regular bath.
We filled the pink plastic tub they provided
with warm sterile water heated in the microwave
and scented it with lavender oil.
After some initial obligatory protest,
you quickly learned to love
long, luxurious foot soaks
while one of us gently bathed you in bed
with the softest linens we could scavenge. 

Bald head wrapped in a baby blanket, serene in your post-bath glow,
you look like a child monk.
You cling to me as I dry your chafed back.
Afraid of tubes pulling and bandages tearing, you no longer hurry for anything, even stories.
We slather you in soothing ointments and balms during the diapering ritual.
We didn’t quite make it to potty training, did we?

 Space enough for only two on the blue, vinyl chair-bed,
I transport you to Mommy’s waiting arms for snuggles
Together, you gaze out the big windows overlooking the city.
It’s not the same; we all know it!
no singing about frog feet, no jazz clap, and sometimes no stories at all.
But holding, yes, and humming, yes,
rocking, yes, kissing lash-less eyelids, yes!
—a sacred nightly spa-fragranced baptism—
Clinging desperately to the now, stretching it out as long as possible,
I watch you fall asleep,
the hopeful scent of lavender heavy in my nostrils.

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