Caemon is a little boy who was diagnosed with juvenile myelomonocytic leukemia (JMML) just before his third birthday. After several rounds of chemotherapy and finally a bone marrow transplant, Caemon lost his battle with leukemia on February 5, 2013. Read Caemon's story on our blog.
Four years ago, on December 26th, I was nearly ten weeks pregnant. Jodi and I were going for an ultrasound, though, to confirm this tenjuous piece of news because my doctor was concered 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 26th, 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 the 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.
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.
Nine years ago today, I was struggling to birth a nine pound eleven ounce baby boy with a knot in his umbilical cord, a baby boy who would turn me into a mom. What I didn’t know is this same baby boy would also turn me into a cancer mom, and exactly forty-one months later, this baby boy’s death would turn me into a bereaved mother at 9:00 in the morning.
Nines. They followed Caemon his whole life. He liked eight, but nine was the number of his birth month, his birth year, his birth weight, his death time. He beamed with pride each time he shared his birthdate: 9/5/09.
But with all this familiarity of nine, I don’t know my son at nine. My boy should be nine years old today, but to imagine a nine-year-old Caemon is like trying to picture San Francisco in ninety years. Some of the structures are certainly familiar, but most of it is hard to fathom. I don’t know what he would have enjoyed doing today, what sort of fabulous birthday food he would have wanted, what kinds of gifts I might have gotten him. I cannot picture him beyond his blonde hair and blue eyes—but would he still be blonde? I don’t have any idea how tall he would have been or what his nine-year-old hugs might have felt like. Nine-year-old Caemon feels impossible.
But that’s because nine-year-old Caemon is impossible.
I am five and a half years beyond my son’s death, and I hardly know how to celebrate his birthday. His favorite foods of his three-year-old days are obvious. Those red Lindor Truffles will always make their way into my home on his day, and the toasting of his favorite cinnamon bread will fill the house with its warm aroma. Beyond this, beyond talking about him and wearing crocodiles and telling his stories, it becomes harder to know how to set aside the time for my son when there is another life to be lived. And there is grief in that too.
Caemon’s little sister, his three-year-old sister, started preschool today of all the emotionally charged days. The time leading up to this has been so filled with emotion. She turned three at the end of July, and every day since, I have watched her, studied her, because this is my first experience parenting a healthy three-year-old. Two weeks before Caemon’s third birthday was his diagnosis date—just after his own first two days of preschool. He spent all but sixteen of his remaining days in the hospital.
The weaving of these milestones—my daughter starting school, Caemon’s ninth birthday—feels like a handful of tangled necklaces. I can’t figure out which bits belong to my grief and which strands belong to the normal pangs of a mother of a child growing up. To try and disentangle them feels an insurmountable task today, so I feel it all together, this big, shiny, messy muddle of love and anguish and fear and pride. It all belongs to me. It all belongs to my kids. My kids.
I rejoice in watching my three-year-old daughter conquer new fears and learn new words. I delight in her growth. It all reminds me of him though. She is just his size–his height his weight. She, like him, is not fond of babies. She, like him, has an insatiable appetite for muffin batter. And like him, she leads with her beautiful, gentle heart. But this year is where their paths diverge: Caemon will always be the memory of everything before three years and five months. But his sister will be continuing on. She will grow up. She will have friends and multiple first days of school. She will have hair, bruises that heal, and cuts that scar. She will have birthdays, lots of them. And she will have her own favorites.
Right now, her favorite number just happens to be nine.
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.