wortlos: a decade

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

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

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

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

I miss them. I need them.

I miss him.

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

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

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

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

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

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

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

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

this is halloween

Today is Halloween. It’s Halloween, and I have a three-year-old to dress up, a three-year-old with whom to share the wonders and strangeness of this day. It feels like a miracle.

2012-10-31-12-54-59.jpgSix years ago today, I also had a three-year-old with whom to celebrate Halloween. Caemon was dressing up as his favorite superhero: a nurse. He had scrubs the same shade of blue as his nurses, a pretty amazing counterfeit UCSF ID, a surgical mask, and a bald head to match all the nurses who cared for him.

But his mask, while conveniently thematic, was not necessarily part of the costume, and his bald head resulted from the chemo that dripped into his body to try to cure the most terrifying monster of all ravaging his little body. Still, my boy was ready for Halloween, and the fact that we were home for a rare few days from the hospital meant he got to enjoy the thrill of walking out into the world wearing the disguise of someone who was, in his eyes, invincible. Wearing his costume to have blood drawn meant wearing a surgical mask, which he needed to protect him from all the viruses fall has to offer, wasn’t so strange out in public. It also meant that the providers in the clinic we went to gave him more candy. But most importantly, it meant he felt like he was one of them and that he had some control over circumstances that so rarely seemed to be in his control.

I remember it rained that day, that we would get a call from our Nurse Practitioner at IMG_8183UCSF telling us we would need to come back that night, telling us to take him trick-or-treating first, telling us they would make it special for him when he arrived. I remember walking him in the rain to four houses in our neighborhood, the rain on my face hiding the tears that were flowing freely. As the neighbors handed him very special treats, I remember wanting so much just to have a normal Halloween for my boy, a normal childhood, a normal anything.

I remember driving that night over the Golden Gate Bridge, the rain and the lights of the city twinkling so magically and how sharply that contrasted the thick blanket of disappointment in the car as we returned to the hospital early with a very sick boy. I remember going through admitting at the hospital with my little nurse in tow, and as we walked the hall to the elevators to go up to the pediatric oncology floor, a nurse in the ER swooned when she spotted him and asked if he was ready to get to work that night. “Of course!” was his reply, as he began so earnestly to follow her. I remember arriving on his floor to find his room prepped by a favorite nurse with treats in the form of exciting medical supplies to find. And I also remember an hour-long attempt at getting him an IV from a beloved nurse in an Alice costume because in the morning he’d be getting his Broviac surgery—a central line—and he needed to be topped up on platelets.

I remember that Halloween more than any other. Trauma has a way of tattooing memories onto our minds, and while I have soft-filtered images of his first three Halloweens, that last one may as well have happened yesterday.

And it was his last. Caemon had four Halloweens. He was a polar bear, a skeleton, a kitty, and a nurse. That’s it. He carved pumpkins once. He trick-or-treated twice. He loved every bit of it, even as a sick little boy.

But here I am six years later. I am sitting in my car, dressed as a black cat, complete with drawn-on whiskers, because my three-year-old is at school, and I am to help with her Halloween parade. She is also a kitty, all in pink. She chose my costume so that I would be like her. The idea for her costume came from her love of the cat in the book Room on the Broom—a book of her brother’s, a gift from one of his beloved nurses. Even though he is not here, her big brother influences her. Our stories of him, the photos of him all inform her existence and my parenting. I treasure that, but sometimes I have to pause. Is my pain and grief somehow tainting how she celebrates these days? Am I wrong to let her images of her big brother color choices she makes?

As much as I have feared her living a life in Caemon’s shadow, I need not worry. This child shines in her own brilliant way, and she reminds me when I find myself lost in my grief this time of year that I have to keep celebrating. Though I was reluctant to do so, just as I have been every year since he died, she encouraged me to pull out the Halloween decorations. She reminded me that, yes, this is what we do. We display the big spiders and the cauldrons and candles and the purple lights. We visit the pumpkin patch and drink too-sweet freshly-pressed apple cider. We decorate pumpkins, first in stickers and paint, then with whichever design we opt to carve into them, and always at the last minute. We put on as many costumes as we can for the entire month of October. We eat the treats. We go to the parties. We celebrate.

And because of her brother, she gets to eat some candy despite my reluctance to give my kids sugar. Because of her brother, I go to her school and volunteer in costume even though I should be working. And because of her brother, I face this day with reverence, with poignancy, with an ache in my heart. But because of my daughter, I can finally see this holiday with joy again.

And isn’t that perfect? Halloween is a time when we celebrate the dark, when we look at the underworld and peek behind the veil to see what we don’t normally want to acknowledge. We see fear and horror and even death on parade. And to that we add the light–of sparkles and jack-o-lanterns, and, yes, little pink kitty cats. I can think of no better day to honor my two children, to see the intersection of the lost and the living, to embrace everything they are to me, to one another. And for the first time in so many years, I am grateful as can be to celebrate this day.

 

 

opening day

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

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

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

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

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

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

J15bw
Image courtesy of In Her Image Photography

secrets

Below is a post written by Jodi.

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

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

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

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.

 

three years, five months

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

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

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

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

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

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

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

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

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

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

mary lincoln and me

From Jodi:

mary_todd_lincoln
Mary Todd Lincoln

In her youth, Mary Lincoln was considered intelligent, witty, and gregarious. Unfortunately, life would rob her of her happiness, and she became known for her obsessive behaviors such as overeating and extravagant spending, violent outbursts, paranoia, long periods of depression, and multiple suicide attempts. For women of her era, this was more than enough to get her locked up in an asylum. Driven partly by concern for his mother’s well-being (Robert Lincoln was a politically ambitious man, and his mother’s behavior was a liability), her only surviving son committed her to a madhouse. Fortunately for Mary, she had connections and was willing to make a stink. She was ultimately released into her sister’s custody to avoid national embarrassment.

As if Mary Todd Lincoln hadn’t been through enough—two of her four sons died in childhood before her husband’s assassination, and another son died at age 18—she spent much of her post-White House years defending her sanity, even as she was valiantly trying to hold on to it.

Institutionalized for "exhaustion."
Institutionalized for “exhaustion.”

Mary Lincoln wasn’t the only woman diagnosed insane due to grief; history reveals that the cries of bereaved women echoed throughout Victorian era asylums. Women were routinely locked away by men for behaviors deemed unsuitable to their gender: using foul language, moodiness associated with PMS, menopause, or postpartum depression, being too interested in sex, and even for disagreeing with a husband’s religious beliefs. “One symptom was depression after the death of a loved one. For women, if the depres­sion continued to last longer than the woman’s family deemed an acceptable period of grieving, the depression became grounds for admittance to the asylum” (full article).

Surely had I lived during this time, I would have been committed to an insane asylum by now:

  • Violent outbursts/foul language
  • Prolonged periods of depression
  • Overeating / under-eating
  • Exhaustion
  • Addiction

Fortunately, I do not live in a world where women are locked away against their will for these afflictions. Still, my grief over the loss of my son has had a fallout effect not unlike what Mary Lincoln experienced.

We are far from our best selves when we experience loss and grief. Our culture does not address death in any meaningful way. We glorify it in the media, but when it comes to the real deal, many around the bereaved just can’t or don’t want to get it. It’s too painful, especially when we’re talking about the death of children. This societal discomfort often leaves grieving mothers alone in the silence because people “don’t know what to say.” They don’t realize how brutal silence can be.

Mary’s friends and family grew tired of hearing about her grief and didn’t understand her erratic behaviors, and so they distanced themselves from her, and she was very much alone in her final years. This shrinking of one’s intimate circle has happened to me. I have lost many of my most treasured friendships since my son died two years ago. I know why. Some things are just too hideous to look at. I’m one of them. Unlike Mary, however, I have access to support groups, psychiatry, and medication, which I avail myself of regularly in order to function in the outside world.

Inside, she and I are the same, though. We would do anything to ease our suffering, to be understood, to make sense of the senseless. She even consulted spiritualists to connect her to her dead husband and children and was taken advantage of by these charlatans. It’s not so hard to understand, as we look for signs everywhere that our loved ones are not really, entirely, all-the-way gone. But whatever momentary solace or distraction we find in anger or shopping or the bottle, nothing ever restores us. We walk around like amputees, making the rest of the world uncomfortable. That’s why she was locked away. That’s why my friends have ditched me; it’s why so many people sublimate their grief. Not for themselves, necessarily, but for the comfort of others. Those who refuse to acknowledge or deal with their grief will continue to suffer, perhaps silently, but suffer nonetheless. Mary wasn’t capable of silence, and she paid the price. She is regarded by history as one of the most reviled first ladies in our country’s history. Honestly, I’m not capable of stuffing my grief either. It is not how I’m made. It isn’t that I spend my days bleeding all over others, but I do not deny who I am or what I have been through, and I won’t stop talking about my beautiful son—ever. It is why Timaree and I write this blog. It is a natural impulse given our reverence for the written word. But over time, I have found it to be even more significant than my own healing. The writing here has given others the chance to process their own grief, to muster the herculean strength it takes to bring it into the daylight and let it breathe. I can’t say it is always comfortable having my pain and shame on such public display, but if I don’t acknowledge my grief and the fallout from my son’s death, I will certainly die miserable and alone, like Mary.

Once in a while I entertain the what-if fantasy that Mary Lincoln lives in modern America, and I imagine her walking around in a “Fuck Consumption” t-shirt. Maybe instead of being committed to a loony bin, she would check in to a boutique recovery center for a long rest, daily massages and mud baths. At least she would have choices. That’s what I regularly have to remind myself; I have choices that she didn’t, and I need to make better ones, not for the comfort of others, but for me, and in some ways, for Mary too.

lessons of a lifetime

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

Caemon should have started school this year.

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

But then leukemia struck, and he never went back. 

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

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

Caemon never learned to jump. 

He never wrote his name.

He never potty trained.

He never drew stick figures.

He never rode a bike.

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

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

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

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

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

He learned to tell a story.

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

He learned to swallow a pill with ice cream.

He learned to make ice cream.

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

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

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

He learned to gently pet a cat.

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

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

He learned to hug trees. 

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

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

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

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

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

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

Caemon's first day of preschool.
Caemon’s first day of preschool.

the boy and the turtle

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It was a turtle.

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

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

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

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

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

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

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

a letter to my son on his fourth birthday

Dear Caemon,

Four years ago today, I finally got to meet you. For months, you had been rolling around in my belly, sticking your foot as far out as you could (I imagine you were a bit cramped in there, big boy that you were), but finally, on September 5th, just four days after my own birthday, I received the best gift of my life: my beautiful Caemon.

Every month after you were born, I wrote you a letter about all the things you had been doing that month. Some months were pretty eventful, like the one where you learned to sit up or say “mama,” and some months were mostly love letters, telling you just how much love you had brought to me and your mama.  I loved writing those letters, reflecting on who you were becoming, reveling in all the joy you had brought to our lives.

This year, your fourth year, was your last year on this earth, sweet boy, your last year in our arms. I remember last September 5th well. You had gone to the hospital for a platelet transfusion the night before, and in the morning, we got up and went to your favorite place: the Exploratorium. You were tired that day, but you were overjoyed to spend time with your cousin, your aunt, and your moms. I remember soaking in every moment of your birthday, loving that we could be out in the world together. Earlier in the week for your birthday party with the whole family, the local firefighters brought a couple of their engines to our street so that you and your cousins could play on them. Do you remember, Caemon, how the fireman on the medic truck let you lower and raise the ladder? Do you remember how hard you laughed every time it went, THUNK! Afterward, you would tell the story and hit me so hard as you said, THUNK! I didn’t mind; you just wanted to recreate that sensation. You loved that smaller engine with all the medical supplies. You had just started learning about them. We were all fairly certain that one day you would practice medicine one way or another. But what am I saying? You already did.

This year brought us a Caemon who was so very sick, a boy who had to stay in bed, a boy who had to have pokes, who had to go into surgery (the warm room is what you called the OR), who had to be hooked up for ten-day-long chemo infusions, and who had a bone marrow transplant. You had to endure so much, and when I find myself trying to imagine going through the same, it terrifies me. But you did it with such grace, my son. You laughed, and you loved, and you made friends with your fears. You cradled your syringe pumps, made friends with your “sad, sad boingy tubes,” and even scolded your IV pole (“Stop, staring at me, Beeper!”). You showed your doctors and nurses and social workers and dietitians and child life specialists and book buddies and anyone else who came in the room just how brave a person can be when faced with countless medical procedures. You showed them how to play in the face of fear, how to laugh, how to read a good book, how to take on a new name when you don’t feel like yourself, and how to always, always accept a hug from a handsome blue-eyed boy.

And you taught me and your mama, Caemon. You taught us things about ourselves, about just how brave we could be, how we could do anything if it meant saving you, and you taught us that enough love can get a family through just about anything. You danced with us, read with us, made crafts with us, raced with us down the hospital hallways, and you held us in your arms as though you were a big man there to comfort his moms. You hugged me and patted me on the back when I was sad, telling me it was okay, that you had me. You told your mama that the two of you would get through the night together. You loved us as big as you could and we loved you right back.

We started to talk about the big party we would throw you for your fourth birthday, where we would invite all your friends from the hospital and all your friends and family from home, and we would celebrate. We would blow up water balloons, and you would throw them at the cats (that’s another thing you did last year), and you would have as much ice cream as you wanted, and we would listen to your favorite music and dance and dance and dance. We would celebrate being leukemia-free.

I remember a few weeks after your bone marrow infusion, when you started feeling a little better, enough to do some eating, and I said, “It seems like you’re feeling better, Caemon. Do you feel like you’re getting better?” You nodded and smiled. But a week or so later, after your relapse, after you started feeling really miserable, I would assure you that it would be okay, that you would get better. Every time, you would shake your head no. You knew then you weren’t going to be here much longer. You kept us in your bed with you as much as you could, and we stayed because we didn’t want to miss one more moment with our precious boy.

We didn’t get to throw you that fourth birthday party, not the one we talked about. Today, we’re throwing a different kind of party instead, one that you would absolutely love. You see, today, I went teaching with mama. I’m sitting at her school, in her very cool office with the little fridge you liked so much. In a few moments, I’m going to go hang out with people who have a whole bunch of medical supplies: they have blood pokers and different colors of Coban. They have tubing and alcohol swabs and syringes and vials for labs. Lots of people are going to come and get poked and give their blood for kids like you. They’re going to help save kids’ lives so that they can celebrate their fourth and fifth and eighth and fiftieth birthdays. I know you would approve. I wish you could be here to show them how to hook up the tubes, how to hold still when the poker goes in, how to make friends with all the machines.

But mostly, I’m feeling a little selfish. I really just wish you were here so that I could hold you in my arms, kiss your whole face, see that brilliant smile, hear that infectious giggle, and feel the most wonderful feeling in the world again, the feeling I learned about four years ago today: the feeling of being your mommy. I love you more than the ocean and the moon and the stars. I will miss you for the rest of my life.

Happy birthday, my love, my light, my beautiful Caemon.

Love,

Mommy