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.

1,249 days

Four years ago, on December 26th, I was nearly ten weeks pregnant. Jodi and I were going for an ultrasound, though, to confirm this tenuous piece of news because my doctor was concerned the baby might not be developing. It was a day of such uncertainty, the greatest terror I had felt since the day of my miscarriage a few months prior, and before that since the death of my son. However, within moments of the ultrasound tech placing a blob of warm gel on my belly and moving the transducer around, there on the screen was a little peanut-shaped blob with an unmistakable flickering heartbeat. My eyes poured tears, and relief transformed those tears into laughter, into hope.

Today, that little blob with the flickering heart is my vibrant daughter. Yesterday, on December 26^th, my daughter turned three years and five months old. Three years, five months. That amounts to 1,249 days I have spent with this wondrous child—exactly the same number of days I spent with her brother. And today, today I have a child who has been on this earth for 1,250 days, and that I have never known before.

Before my daughter was born, Jodi and I took on the task of finding a new pediatrician. It was important to us both to find someone who understood what we had gone through, who would pay extra attention to our daughter. Just in case. The doctor we found had been in medicine for decades. He was sharp. He was warm. And he had known too many bereaved parents. I remember the wisdom he shared that day as we sat in his office as my daughter rolled around in my belly. He told us it would be hard those first few years, that we would probably overreact, that we would probably be hyper-vigilant—that he would be too. And he said that when our daughter grew to be the age Caemon was when he died, it would start to get better. He had seen it time and again. One day, these two bereaved mothers would relax into parenting what he predicted and hoped would be a healthy child.

And here we are. We have reached what he called “that magical age.” My daughter is now older than her big brother ever was, ever will be. She is healthy. She is wildly articulate. She is moody and energetic and willful and spirited and empathetic and curious and funny and wise, so wise. She is so much of her brother and she is so much just her.

I have watched her these months as she entered three. I didn’t know what it meant to have a three-year-old out of the hospital, a three-year-old without leukemia, a three-year-old without chemo and pain meds and steroids and all of the hardships that came along with that life with my boy.

As it turns out, it’s not that different in many ways. She has strong opinions, big feelings. She tells me regularly that her name is not her own, that she isn’t anyone—the very same existential declarations that led me to find the “Croc” moniker for Caemon. I’m left wondering from time to time if maybe it wasn’t morphine that made him reject his name, that maybe it wasn’t always feeling sick that made him protest returning to his room. I am learning that three-year-olds, sick and well, crave control of their situations, need boundaries to feel safe in their worlds, require the comfort and security of their parents’ arms to navigate new feelings and experiences. Of course, it’s different parenting a child in the hospital, but there is an odd comfort in knowing that my son was kind of a normal kid in some ways—as normal as my quirky offspring can be anyway.

With this knowledge, I don’t mind hearing my daughter proclaim that not only is she not her name, but that she is also not a child, my daughter, a baby, a dinosaur, a dragon, a cat, or funny. And while her emotional meltdowns make me sad for her, I don’t panic when she loses control. I just sit on the floor, open my arms, and let her collapse into me like he did so many times. I am her home base as I was his. She fits, not exactly where he did, but similarly, perfectly.

But what is different is that she is healthy. This year has meant preschool, something Caemon never fully experienced. And with preschool has come preschool colds—seemingly one after another. She has had some fevers. She has spent days wanting nothing but to curl herself up in my arms. The difference is that so far (and you know I have to say that), she recovers without incident. Her coughs fade away. Her ears remain clear. She bounces back and shows me time and again what a healthy child’s immune system is meant to do. Every time, I marvel, and every time, I also grasp just how sick he was for so long.

Of course, the differences span far beyond her health as we enter these unfamiliar months while she continues to grow and develop and learn. My daughter sings “Rudolph the Red-Nosed Reindeer” and dances her own made up “dragon dance.” She is obsessed with dinosaurs and horses, and she plays with toys and (usually) not medical supplies. She stomps in puddles and dresses in costumes and loves to get messy. She is making friends who are children (without one nurse or syringe pump among them), is on her first winter break, had her first holiday performance at school. And like most little sisters, she looks up to her big brother, tries to emulate him through her interpretation of who he was. Each day of her  1,250 on this planet thus far, she has reminded me that she is her own person and always will be. There is no danger of her taking on the role of replacement child, and as each day passes, I believe I may very well see her grow up.

My son’s favorite song in his final five months was a Jack Jonson song called “Supposed to Be.” Every time it came on, he wanted me to hold him, dance him, and as I did, he listened to every word, every note so intently. The lyrics were simple:

Maybe it’s up with the stars
Maybe it’s under the sea
Maybe it’s not very far
Maybe this is how it’s supposed to be
Maybe this is how it’s supposed to be

Maybe it’s trapped in a jar
Something we’ve already seen
Maybe it’s nowhere at all
Maybe this is how it’s supposed to be
Maybe this is how it’s supposed to be

Looking forward as we rewind
Looking back is a trap sometimes
Being here is so easy to do

If you want to…

We would play this song often in the hospital, and as I held Caemon, his tubes draped across my arms, his arms wrapped around my neck, my lips resting on his sticky, bald head, I would listen carefully too, terrified that this was, indeed, how it was supposed to be.

My daughter does not want to hear this song. She does not want me to play it and begs me to stop it when it comes on. It makes her sleepy, and because of this, as she so very sternly asserts through her three-year-old logic, it is not a good song. I don’t have to play it to hear it though. All of those replays in the hospital have it indelibly loaded onto the Caemon playlist in my mind. And these days, as I observe her surpassing her brother in so many ways, as I see her three-years-and-five-months healthy and three-years-and-five-months strong, and as I miss her three-year-and-five-month-old brother, this song wafts through my head and slow dances across my heart, a bittersweet message from beyond.

Yes, maybe this is how it’s supposed to be.

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.

Six 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 UCSF 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 20^th, the day the crack in the ice opened up, the day the oxygen left the atmosphere, the day I learned the monster under the bed was real.

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

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

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

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

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

Image courtesy of In Her Image Photography

parenting from afar

Tomorrow I am flying to Austin, Texas to parent my son.

These days, my time is spent so much in the present. I wake up early with my neary-two-year-old daughter. I make breakfast, clean up spills, change diapers, negotiate nap times. I plan classes and help eighteen-year-olds navigate the challenges of going away to college. I teach the tedious art of semicolon usage. And I work tirelessly at improving myself, whether it’s improving my mental or physical health, finding time to sleep, finding time to read. Even finding joy.

But never do I get to parent my boy.

In fact, it is devastating to admit that while Caemon’s name is always on the tip of my tongue, there are many days that go by when I don’t sit with my memories of him, days that go by when I am so busy I am numbed  to the depths of my loss.

This is natural, of course. Time heals, they say. I am not sure I have healed any more than one heals from an amputation. Yes, the initial wound is gone, covered in scar tissue, but the limb is still missing. The boy is still missing. My boy. My son.

How does one care for a piece of oneself that has ceased to be? How does one mother a child no longer on this earth?

It is our nature as mothers to want to continue parenting. When Caemon died, I went back to teaching, and suddenly my students were my surrogate children. But it was never the same. Still, I went on yearning to mother until my daughter came, and then I learned that I was aching to mother two children, but not any two. My two. My boy. My girl. My kids. (Oh, how good it feels to write that in the plural.)

I find my way to two-child parenting when I can. I have learned that I can share my son with my daughter. She says his name so beautifully. She begs to look at his photo books, delights in watching his videos. I will involve her in his legacy as much as she is inclined, but there comes a time when a mom wants to give her attention to just one child at a time. And this is why I find myself flying to Texas.

On Sunday, I will shave my head with the 46 Mommas—my tribe of cancer moms, too many of whom have also lost children. I will cry. I will think constantly of my son. I will leave my little girl with her other mom so that I can do this wholly and without worrying her gentle heart. I will watch Caemon’s videos and play his music and listen to his voice and talk about him day and night.  I will say his name over and over without apology.

Next year, I’ll fly to another city, and I’ll do the same. I will keep raising money in his name, keep raising awareness and using his beautiful smile to draw people in. It’s what I have left. It’s one real way I can parent my son.

Mommy and Caemon

Should you want to donate to my shave fund, which funnels to Caemon’s Hero Fund for JMML research, please follow the link below:

https://www.stbaldricks.org/participants/CaemontheCroc8

 

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.

 

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.

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 haircut 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 himself. 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 about 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

 

 

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.

farewell, dear friend

Yesterday, a friend of mine died, a friend I never had the pleasure to meet. Three and half years ago, she began commenting on this blog. She found me through a mutual friend and followed Caemon’s story to the end. When my boy died, this woman I had never known but who wrote the most beautiful comments reached out to me. Her only son had died too, as had her husband. And so even though we were decades apart in age and oceans apart in space, we became sisters on this dark path that is grief.

When Caemon was diagnosed with cancer, I never imagined the good that could come out of it, and when he died, I certainly never thought that there could be bright spots. I have learned since that the bonds I have formed with other bereaved parents and other parents of children with cancer are some of the truest and deepest I have known.

Throughout the past few years, my friend has come to feel like family. She has sent me voice messages on my birthday, poems and letters for my son, my wife, my daughter, myself. She has shown me that grieving openly and earnestly and without apology is important. Throughout the past three years, she has grieved with me through the magic of the internet, remembering every anniversary, honoring my process, helping me see that one can live with this albatross of grief with grace. We have read one another’s writing, commented thoughtfully, offered words of comfort and warmth, and more than anything, we have understood the other.

I had dreams of traveling to Australia and finally giving her a hug, of sitting with her all night talking about our sons, crying and laughing together as I knew we would. I know I would have enjoyed her cheeky humor even more in person. I think she would have liked my own sly wit. It would have been more a meeting of long-lost friends than internet strangers, for we were two bereaved mothers, two women longing for their sons, two women so familiar with pain but unafraid to laugh, two travelers in lives that became almost too painful to bear, two survivors of the worst loss. We knew one another’s souls. But that meeting was not meant to be.

I will not be able to see my friend off in the traditional sense. I won’t be attending a memorial or visiting her grave, but I can say my goodbyes right where we said our hellos. And as much as I already miss her, and as much as I know everyone she touched misses her, I also know she has finally escaped the unrelenting suffering of her grief.

T, sweet friend, wherever you are, may you finally revel in the twinkling of those lights.

You can read T’s poem “Twinkly Lights” inspired by a post about Caemon on her own blog here.