Today, Jodi and I ventured over the Golden Gate Bridge and through the streets of San Francisco to the new UCSF Benioff Children’s Hospital. Our first visit to the hospital’s new location would bring us hugs and conversation with some of our favorite of Caemon’s caregivers, reconnection with our UCSF family. However, this was not our sole purpose for visiting. Today marked the delivery of our annual C is for Crocodile book drive donations.
In five large tubs, we packed over 350 books for children from babies on up to young adults. These books, sent to us by our generous community, will be distributed today to children on the pediatric oncology floor at the hospital.
The idea for this book drive was born in the early days after Caemon’s death. We wanted a means of honoring our son while giving back to kids like him. While we had seen many, many gifts of toys and hats and bears and more during his stay in the hospital, we didn’t see many new books, and Caemon loved books. With two English teachers for mothers, I suppose that is no surprise, but he was enamored of his stories. He would often make stacks of books for us to read, and we would sit on the floor of his room reading together until we made it to the bottom. Our moments reading to Caemon were some of our most precious, and reading to him in the hospital brought us a little taste of home and familiarity. For these reasons and more, we decided to hold an annual book drive in Caemon’s honor, and I can say it is my favorite thing we have done in his name. Not only are we able to celebrate one of our son’s greatest loves (and ours too), but we can use this as a regular connection and expression of gratitude to our UCSF family. Beyond this, the book drive gives our community a way to connect, to give in a very real way to patients just like Caemon.
This past year, my dedication to this effort was renewed when I received an email from the mother of a patient at UCSF. This little girl had received one of our book donations, and it had helped her through a difficult time in the hospital. It was easy to see myself in this mother, to see my son in her beautiful bald daughter bravely battling leukemia. The message brought me to tears, for this one little book had done just what we had hoped: it brightened the day of a family going through the scariest time imaginable; it provided them a little respite from their lives on the front lines, a reminder of the basic routines of families of small children. Since that first message, we have kept in contact with this mom, following her daughter’s progress, cheering them on as this beautiful girl progresses through her treatment. And this year, as our book drive got underway, we received a big package from this family: they made their own donation of some favorite books of theirs, bringing the giving full circle.
Today, as we dropped off our big bins of books, it was hard not to imagine how much Caemon would have enjoyed this process, that he would have loved seeing his old UCSF friends and gifting them boxes and boxes of books. Instead, we pass on the gift of one of Caemon’s greatest loves and take some joy in knowing our boy would most certainly approve.
Before Caemon’s diagnosis, our little family’s community circle was fairly small. We had close family, a few new friends and colleagues, and a number of friends hours away. As fairly recent transplants to our city, we were still finding our tribe. When Caemon’s illness hit and we learned how very sick he was, we were certain that it was going to sink us. We had health insurance, but this meant Jodi had to continue working, and it wasn’t going to cover everything. We didn’t know how we would keep our residence, how we would afford traveling to and from the city, eating out for every meal, managing all the daily expenses of living in the hospital. But more than that, we didn’t know how we would make it through emotionally. How does one handle day after day in the hospital, the very lonely road of being a parent of a child with cancer?
Within just a day or two of his diagnosis, all of these uncertainties were put to rest.
On the first day of Caemon’s diagnosis, my sister started us a Caring Bridge site, and our friend Carol set up our Facebook presence “Caring for Caemon.” We shared the news with family, with friends from our moms’ group, even with my mom blogger community, and suddenly offers for help and messages of support were overflowing our inboxes and phones. A blogger friend took over my blog for a time, leaving announcements there. She communicated with my sister who communicated with Carol, and they all coordinated to set up fundraising and news dissemination and support. Our moms’ group made up a schedule for caring for our house and cats, and just like that, we had little to worry about but our son.
And for nearly six months, that community support just kept growing. Our neighbors kept our yard up. The circle of moms did our laundry, cleaned our house, cared for our cats. Blogger friends started a t-shirt fundraiser. Carol put together a wine country gift basket raffle. The moms organized a huge event, raising money and celebrating us. Donations came in daily to help us stay afloat such that I was able to take leave from work. Messages of support from family, friends, and strangers popped up in our inboxes on Facebook. A few people set up regular visits to keep us company, to give us respite. An engine company from the San Francisco Fire Department, one of whom is a close friend of my brother’s, came to see Caemon with gifts and donations and words of encouragement. Our local fire department dropped off presents, even brought their engines over for Caemon’s third—and last—birthday celebration.
To list every kind thing that happened to us just in that first ten days of learning our son had a life-threatening disease could take me days. To list the acts of kindness and compassion that came in the coming months, even in the last two years, would take weeks, months. The picture is clear though: from our son’s illness, a community of compassion sprung up, and it grew, and it grew.
To say that this has been humbling is an understatement. I never imagined that over a thousand people would subscribe to a blog about my son, that over two thousand people would follow a Facebook page dedicated to him. And I never imagined what those people—most of whom I’ve never met—might do. From buying t-shirts and making donations to help us out to posting photographs of appliances and lit candles and sunrises to keep our spirits up, sending words of hope and inspiration, and later, when Caemon died, message after message after message of heartbreak and condolence. Members of our community helped our Leukemia and Lymphoma Society Light the Night team raise thousands of dollars and continue to donate to our St. Baldrick’s fundraising efforts; they have donated hundreds of books to our C is for Crocodile book drive; they have given blood and signed up to be bone marrow donors. At least one member of our community has become a bone marrow donor. Our community raised money for a bench for Caemon, and that same community sends photos of their children visiting the bench. This community wears their “Taking a CHOMP out of leukemia” shirts with pride and meet one another in unexpected places—as far away as Brooklyn.
And our community has come together to help other families fighting the battle with pediatric cancer, making donations, offering support, spreading compassion.
And do you know, our community continues to grow? New people join the Facebook page every week. New people follow the blog every day—people who learn of Caemon’s story and go on to think a little differently about their own lives and what they bring to the world, people who remember our golden-haired boy and keep his legacy alive in so many ways.
This community with its remarkable wingspan has held our family up during the most difficult time in our lives, and it just continues to give and give and give. For our little boy with his tight circle of friends and family to draw thousands of people together for good is nothing short of beautiful, and a simple “thank you” will never be enough to express the gratitude we feel for all of you who are the living, breathing envoys of Caemon’s legacy.
Those who know about Caemon often know of his many little quirks. They know he liked to wear scrubs like his nurses, that he loved to read, that he spoke like a much more mature child, and that he loved appliances. Early on after his diagnosis, I put together a poster board full of photos of his favorite appliances. People sent in pictures of theirs to cheer him up. Caemon loved all kinds of appliances from coffee grinders and stand mixers to vacuum cleaners and air pumps. But he loved them in unconventional ways in that he took care of them, nurtured them. Once, we left Caemon with a favorite babysitter, and when we came home, they had put the vacuum cleaner down for a nap, complete with a blanket. Another time, I lifted the cover of my sewing machine to find a bowl of salad Caemon had made for it out of his wooden play food. His toy coffee maker was often swaddled in blankets and snuggled to sleep. The air pump was slow danced and spoken to with the most soothing of voices.
But Caemon’s love of appliances did not come easily. In fact, this was a love that stemmed from a very grave fear of these often noisy, seemingly unpredictable machines. When we ran the vacuum cleaner, Caemon would cry. He would run to his room. He would beg for us to hold him, and he would tremble until it was turned off. The sewing machine, the paper shredder, all of these things made such terrible noises to him that he would cling to me or to Jodi while we used them, begging us to stop. Of course, we worked with him on all of these fears. He had a “special vacuum hat” that covered his ears and protected him from the vacuum cleaner. He got to sit and watch how these machines worked when they weren’t plugged in, and as time went by, Caemon grew interested in them. Like so many children, his curiosity won over, and he couldn’t help but wonder what would happen if he got to press the buttons and make the machines whirl. Mostly, he still preferred them off, but gradually, Caemon grew to love his appliance friends, giving them names like “Big Vacuum” and “Red Tool,” and that nurturing, loving spirit took hold.
Before long, Caemon was using the vacuum cleaner himself. He would don his special vacuum hat and work away at the living room. He would insist on helping us grind coffee in the morning. He wanted to be up on his stool as soon as the Cuisinart or the stand mixer came out. These dreaded machines had become his friends, and in learning to love them, he learned to fear them less.
To our surprise, this same strategy translated to Caemon’s time in the hospital. Prior to his hospitalization, Caemon was terrified of visiting the doctor’s office. He would begin crying the moment we entered the parking garage, and he wouldn’t stop until his doctor came in and began examining him. It’s not much of a surprise that this was when the tools like the otoscope and the stethoscope made their debuts. As soon as he could turn a light on and off and have a little control, he was ready to engage, but he still was fraught with terror each time we went back.
When he entered the hospital, he was so sick that his fear was a little less noticeable. Perhaps that Jodi and I were consumed with our own dread made his seem somehow lessened. But when Caemon started to feel a little better, he began to see that his surroundings were something to befriend. He became interested fairly quickly in the fancy thermometer they used to take his temperature every four hours. The blood pressure machine beeped and had interesting parts. His IV pole had lights and buttons and tubes. Soon, the machines in his hospital rooms were starting to come alive much as his home appliances had.
Caemon named his IV pole “Beeper.” He would give bandaids to his medication pumps and to his thermometer. Any machine that spent any time in Caemon’s room was covered in evidence of his nurturing, and he continued to befriend the various “appliances” he encountered throughout his treatment. He fell in love with his nurses, even though they often had unpleasant tasks like dressing changes and medications to impose upon him. He loved the ultrasound machine so much that he couldn’t sleep if he knew it was coming. This strategy helped Caemon through each step of his treatment, and what would be traumatic for most well-equipped adults was something Caemon could manage because he led with love.
At his funeral, more than one person spoke of Caemon’s uncanny ability to befriend his fears. His grandmother told the story of his fear of her wall furnace and how quickly he named the furnace “Homer” and would speak of Homer like an old family friend. Grandma and Grandpa’s house became Homer’s house. In her story, she showed just how much Caemon wanted to love his surroundings, just how important it was to him to overcome his fears, and he did. I wrote of the same lessons. One of his nurses did too. This remarkable boy had shown us that we needed to lead with love and not with fear.
During Caemon’s treatment, we learned so profoundly that our love for our son trumped all fear, that for him we would do anything regardless of how intimidating it might be. In the first few days after his diagnosis, when Caemon had to spend time in the PICU, it meant finding strength in our love for our son when the thought of the ICU was nothing but horrifying. When it meant we needed to face unsettling news of test results, it meant our love for our son had to buoy us enough to get through the news, no matter how bad it might be. And when it meant that his body had finished working, that life-saving efforts were not helping, we had to face the greatest fear of all and say the words to let him go because we loved him far too much to try to keep him here when his soul had already gone. As mothers, there was nothing to do but lead with the massive love we had for our son; to give into fear was not an option, even though we lived in terror with every breath we took.
For me, this has become a motto to live by. As a person who has struggled with life-long anxiety, I have almost always led with fear–fear of failure, fear of dying, fear of losing those I love. But I have learned that regardless of one’s fear, life is going to take its course. I have learned from my son that leading with love and even a sense of curiosity can make the fear dissolve bit by bit. It works in big ways and little ways in my life. I am not comfortable with flying, so now, when I board a plane, I pat it on its fuselage and say, “Hi Airplane!” and focus instead on how important it is for me to go new places to honor myself. When I am faced with panic attacks, I go to self love and take a walk or meditate, and in doing so, I live with less anxiety overall. And the bigger fears, they deserve to be met with love too. When faced with whether or not we would try to have another child after Caemon died, the fear of trying again, of having another child who could get sick, of falling in love with a child again was overwhelming, but the love for our son, the love for the future family we were imagining was so much more powerful when I let that lead. And even after last year’s miscarriage, I continue to let love lead as we try again.
We learned after Caemon’s memorial service that more than one person had carried this message away, and for some it was life-changing. The partner of one of Caemon’s caretakers heard this message and had a caiman tattooed on his forearm to remind him to lead with love to overcome fear. People write to us to tell us how they are leading with love in their own lives–in their work, their parenting, their everyday lives–and each time, we see how our son’s life lesson lives on in others.
It’s so simple, so profound, so life-altering, this message from our sweet and oh-so-wise little boy. It is a lesson he demonstrated so beautifully for all willing to see it. It is a gift I will carry with me for the rest of my life.
While Caemon’s legacy is filled with inspiration and wonder, there is always a duality at work. His death shattered our lives, and we were left with the shrapnel of our hearts, our identities, and our relationships littered around our feet. We lost friends who should have been there for us during our darkest hours but could not, for whatever reason. We learned that some would not walk this path with us, and we came to accept that we had to do our heavy grieving alone. There were many months of rummaging around in the wreckage trying to make sense of it, and later, trying to put it back together. I admit, at the time I didn’t know if I had the heart to try. But along this journey over two years, as I have begun to pick up and examine the pieces of my past, I see that some pieces don’t fit into the new mosaic of my life, and I must discard them. They are useless to me now. New pieces, sometimes surprising ones, show up to fill in the gaps: friends I’ve made who have given me hope and strength, volunteer work with the toddlers at our church, a new project at work, a peaceful living environment, Caemon’s legacy work, and of course, always the longing for another child to love.
I am a work in progress. Despite myself, I see a new picture emerging, and it includes more than loss, more than tears. It’s the beautiful faces of my cousins Willow and Angie, Caemon’s Goddess Mothers, whom Timaree and I have gotten so much closer to since his death; it’s the music and art of Thursdays, the peace and solitude of nature, and the garden full of tomatoes and sunflowers that we will grow this summer, the buzzing bees always at work.
I couldn’t have predicted it or planned it this way, and left to my own devices, I probably would have pounded the remaining shards of my life with my fists, pulverized them to dust, and then raised a bloody middle finger to the sky. Here is where Caemon’s legacy really saved me personally. Even in death, I am his Mama, and I owed it to him to be the person he loved. I had to try harder and do better. I couldn’t succumb to despair. If I fell down, I had to get up and try again. This is what I taught him when he was alive, and I would be devaluing those lessons by not living up to them. I would put my pain to better use, and the new people in my life would show me how. Together, we work on this mosaic, always keeping in mind how each piece honors him and heals us.
I am surprised that what my wife and I have been through is actually survivable, and even more surprised that there are as many good days as bad ones. There are days I’m actually happy, and I forget to look over my shoulder for the misfortune sure to befall me. Children keep us firmly locked in the present, giving us barely any time to brood, or that’s how it was with my son. He seems to be helping me stay more in the present even now, and I am grateful that I get a chance each day to be the person he thought I was.
Caemon has been inspiring me to create since before he was born. I have been writing about him his whole existence, painting little things for him, even making up songs. The heart-swelling love a parent feels for a child has a way of doing this over and over when we let it, and sentimentalist that I am, I often let it. It’s no surprise to me that some of the best writing of my life has come from my love for him and my losing him. My golden-haired boy with his Pacific Ocean eyes have been and forever will be a great source of inspiration.
Why it would surprise me that others are similarly inspired by my boy to create I do not know, but the fact is, in introducing my boy to the world, some of that world has gone on to remember him in their own beautiful ways.
It really started before he died. The youngest artists, my son’s peers, regularly drew and painted for him while he was sick. They drew him, and they drew things they thought he would like, and his drawings decorated his walls. Nurses, friends, supporters all created for him too. One nurse made brilliant caricatures; another made crocodiles on sticks. It was so touching when we would awake in his hospital room to find new treasures made for our sweet little boy.
In the hospital, Caemon found his own creative streak, once or twice deciding to use the easel and paints in the playroom instead of going straight to medical play. With little patience for realism, Caemon preferred to create in squiggles and lines, circles and spots. We still have his treasures around our home, the most priceless pieces in our art collection.
But the work that others have created in his honor is endlessly touching. There are a few pieces in particular that stand out to us though.
When Caemon died, we needed a vessel for his cremains. We didn’t want to buy something generic. We didn’t want a traditional urn. Instead, we wanted something that he would like, and so, we put the call out, and a friend of a friend came forward and offered to make him a small box. She came to our home just a few days after he died, and she talked with us about him, about what he liked, what his aesthetic preferences were (and, yes, our three-year-old had his very own aesthetic). She spent time with his things, sat in his seat at our big farm table, and she just felt him.
The day before his memorial, the same day we picked up our son’s ashes from the funeral home, she brought us the box. It was whimsical, sweet, and so very Caemon with his name spelled out in blue, green, and orange letters on the front, words like “dance,” “laugh,” and “cook” written in different textures of rope on the sides and back with corresponding images of cooking pots and hearts, and then on the inside, a wooden blue butterfly—much like the Morpho butterfly—our boy’s soul transcended. And finally, on the bottom of the interior of the box, the word “Live” in wooden letters, along with two fantastic wooden teapots. Complete with a latch on the front (oh how he loved latches), this is a box our son would have treasured. When an error happened with the size of his bench plaque at the Oakland zoo, we were given the original, and so this now graces the top of his box, our own addition. His is not a marble urn, not a solemn vessel; in fact—dare I say it?—I often smile when I look at his box. It contains my son’s ashes (well, most of them—other bits are scattered in forests and canyons and oceans), but it also quintessentially captures his huge spirit. And we add to this creation from time to time. It contains his tattoos, special stones, and feathers, lots of feathers.
The box has been a reminder of the inspiration our son can be to those who haven’t met him, but we didn’t necessarily know that others were experiencing Caemon as muse in their own art. When a friend contacted me last summer with an urgent need to come for a quick visit, as she had something for us, another gift of our muse-child came to us. She presented us with a fantastic hand-made purple box with hearts, and inside, a ceramic sculpted heart with our son’s face in the center. You see, our friend’s friend is a brilliant sculptor. He makes countless glorious pieces, but just before he encountered Caemon’s story, he had begun making these amazing ceramic hearts, hearts of all kinds: hearts with butterflies emerging from them, hearts with text, each one with its own message. In Caemon’s story, he found inspiration for more. Caemon’s heart is a vibrant purple with a grid of hearts connected by other hearts and a photo of our boy in the center. This artist—Marcanthony L.–was taken with how many people Caemon’s short life—and death—had connected. On the back, he painted, “Healer of Hearts,” a line we wrote in his obituary, a line this artist had never read. For the next few months, as he showed and sold pieces from his “Having Heart” series, Marcanthony would donate a generous percentage of his sales to C is for Crocodile. He not only created with our son as muse, but he gave in his honor. Our boy’s influence continues to spread.
And then there is the music written for our son. I have mentioned before our very talented musician friends, and one, a composer and cellist and all around brilliant soul, composed a cello piece for Caemon, for us. It is beautiful, intense, and it captures his whole life, from the waiting we did before he was even created to the mourning we have done in his absence. The middle of the piece is bright with bits of whimsy and joy, and it is bookended by longing. She wrote another piece, this one for guitar and with lyrics, which she shared with us on his fifth birthday last year—our son, immortalized in music, and oh how he would have loved it. I find this song playing in my head regularly, bringing ready tears, both for my boy and for the love of this friend who so exquisitely creates in his honor. (See the slideshow we paired with this lovely song at the bottom of the post.)
His inspiration has come to so many people, people who have made gorgeous crocodile gourds and lovely sun catchers, people who have written poems and letters and essays and stories for and about him, people who have written his name in the sand or created nature altars with him in mind, people who have photographed the rising sun and crocodile forms they find in the clouds. He is burned into the hearts of so many, and through all of this beauty, I do see the very imprint of his soul.
I’ll be honest and say I wish Caemon’s life as a muse had come from beating the odds and overcoming the worst of foes. I wish our son had emerged heroic, triumphant, alive from the horrible depths of his disease, that from his victory, we would have been all the more inspired, but that was not to be. The inspiration he offers comes from a boy with a heart too large to be contained in such a small body, a soul too wise to be bound to this earth, a life so full and bright and poignant that it was destined to become the stuff of not just legend but the source of beauty itself.
I always knew I wanted to be a mother, but for whatever reason, I never envisioned myself actually giving birth. I assumed I would adopt, and that plan pleased me. Not long after Timaree and I moved in together, we determined that she would eventually get pregnant and have a baby who we would co-parent. Later—maybe—we would adopt a second or third child. Either way, I would have to find a suitable identity as the non-gestational mother.
Timaree oozes maternal instinct, perhaps because she is the eldest sister, or because her mother and grandmother were such important early role models, but I have long identified her with the mother goddess archetype. It’s as though she has always been a mother, and for those of you who have seen her in action, there is no doubt that she is a phenomenal mother.
But what about me? I had no such role models. In truth, my own mother had taught me to be angry, to drink, and to hate myself. That’s about it. I had no idea what kind of mom I would be, but I knew that I DID NOT want to be her. Deep down, though, I was afraid that she was inside of me and would rear her ugly head around my son, a terrifying thought.
I looked to my wife for answers and guidance. She knew a lot about babies and had that innate ability to soothe, but we were not the same person. I couldn’t do everything like her, nor did I want to. How to differentiate?
Well, Caemon would see to all of that. More than my skillful wife even, Caemon would teach me how to be a mother; he would inspire me to be my best self and always keep trying; my love for him would grow and stretch me in the most beautiful ways. I wasn’t so angry anymore, and I could deal with his tantrums. In his three and a half years on this earth, I would never hit him or hurt him physically. I would never say ugly things to him or humiliate him; I would pay attention to him, play with him, set appropriate boundaries, listen, and validate his ideas. These were not difficult tasks, by the way. He showed me what he needed, and I complied. Because of him, I figured out how to be a little more patient, silly, and demonstrative. I loved being his mama, and he loved being my son.
I couldn’t imagine a better teacher than Caemon. In this way, his legacy is to his siblings, those who he won’t meet but who will certainly benefit from the training Caemon put me through. Thank you, my boy, for showing me how to be a Mama and loving the one I became.
Caemon loved trees from the time when he was a baby, and we would walk him around our apartment complex to marvel at the different trees there. He would touch the bark, the leaves. “Tree” was most certainly one of his early words. It’s no surprise really. Jodi and I spent years living in the redwoods. We spent as much time amongst trees as possible with Caemon too.
On his first trip to the redwoods when Caemon was big enough to walk (around eighteen months), we stopped for a picnic along the Avenue of the Giants in Humboldt County. We gave Caemon a peanut butter and jam sandwich to nibble on as he wandered among the giants. After taking a bite, he looked up as high as he could at the majestic redwoods, and after a moment’s thought, extended his little arm as high as he could reach, offering the redwoods a bite of his sandwich too. He would take a bite, then offer one to the trees until his sandwich was gone. He knew just what to do; these trees were somehow for nurturing. That trip would also involve Caemon hugging and kissing his new redwood friends, as we basked in the wonder that was our little tree boy.
Throughout his short life, we took Caemon to spend time in trees as much as possible. He wasn’t a climber of them, just a hugger. He wanted to hang out with them, love on them. He knew they were alive, and he made it clear that they were his friends.
After spending months in the hospital and seeing no trees for so long, we opted to make our son’s bone marrow transplant room a winter forest, covering his walls in trees, encouraging others to bring pictures of their favorite trees to grace his walls. And bring them they did. Trees were drawn; they were printed and colored, they were photographed; they were patched together with construction paper by nurses on slow nights. Caemon had the most amazing collection of trees, and he loved every one. We all did. They brought a bit of what felt like home to the hospital.
When Caemon died, our cousin took many of the tree pictures, and with my grandmother, laminated them and attached them to a beautiful branch for his memorial service. It was a glorious mobile, a testament to all the love that had flowed into his hospital room. Afterward, we hung the branch in our yard and let the wind and weather carry bits of trees away until only a few images remained. We still have some in a keepsake box.
In the months after his death, Jodi and I spent a lot of time inside, but we finally ventured out to a bereavement camp for parents of children who have died of cancer. While there, we painted a rock for Caemon, a Croc Rock, and we placed it in a beautiful memorial grove filled with fir trees. We hugged the tree under which his rock was placed, just as we knew he would have done.
On what would have been Caemon’s fourth birthday, two of Caemon’s favorite nurses, two very dear friends, gifted us in his name the most precious gift: 50 trees: pine, spruce, oak, birch, tamarack, and cedar, all planted in Caemon’s name in the Superior National Forest. Trees that will grow and thrive in his stead, trees to which young children can feed sandwiches and climb and hug should they so desire.
And we in his family have planted trees for Caemon too. There is a dogwood for Caemon, rose bushes, lime and mandarin trees, a pine or two, a redwood, and even a spruce. I imagine there are trees we don’t know about, trees that are yet to be planted in his honor. I like to imagine he’s loving them all.
Each time we’re in a forest now, Jodi and I admire the trees a little more closely, pick one or two to give a little squeeze, knowing that this is just what our son would want.
It’s Thursday, which means a lot of things in the Marston-Simmons home, but the thing we look forward to each week since Caemon died is our Thursday Craft Night. Shortly after our son’s death, two friends from our moms’ group decided that the best way to help us through this immeasurable pain was to help distribute the weight, and somehow through this offer, our sacred craft night was born.
I remember one of these friends, just a few days after Caemon died, telling me about a woman she knew whose child died of leukemia, and this woman found her grieving mother’s voice through dance, that she somehow created such beauty out of anguish. I marveled in that moment that anyone in my position could ever create anything. It meant somehow going on, managing to do more than cry and eat and drink and sleep and cry some more. But it wasn’t long before I learned that sometimes the only way to sit with grief by one’s side is to create.
Early on, I don’t really remember what we did on craft night. There were certainly beads and perhaps glue. There were possibly paints. I may have tried crocheting a little, although I had no idea for whom I should crochet. Everyone would bring her own craft supplies and work on something while we talked and drank wine and, in the early days, did a lot of crying, staying up impossibly late, trying to avoid the sleep which meant facing the next day without our son. Occasionally others would join us, but very quickly, we learned that our core group of four was just the nurturing circle we all needed.
Every week, a new craft would emerge. Sometimes it was a shared project; other times, we all worked individually. Our friends graciously listened to our endless stories of Caemon; they stopped to hold us when nights were especially hard. They abandoned the crafts to sit with us through the agony, took us outside for the occasional night stroll under the moonlight. They sang to us, played us music, and created the most tender, gentle nest. They mothered us, made us tea (or poured us scotch), found us snacks, and held the slivers of our broken hearts as we looked for some magic glue to piece them together.
Sometimes we even laughed. In fact, there came a shift in our Thursday nights as we worked through our grief, and we began to focus a little more on the art itself. Jodi and I could listen to more stories about their children; we even made treasures for their kids. And the crafting got more serious too. I took up drawing, doodling, creating bigger images on canvas with pen and ink. I crocheted more intricate works. Our friends beaded and knitted. Jodi began working with mosaic, and she started making birdhouses. Together, we decorated the most amazing piggy banks for a fundraiser auction. It wasn’t that we were no longer honoring our grief; it was that we had found the safety and the comfort and the means to channel it, and channel it we did.
As the months, and now years, have passed, our craft nights remain a constant. For our friends, I think they are that much-needed pause in the life of a mom, a chance to just be without tending to the needs of others (although they certainly still tend to us). We have all now seen one another through our own personal crises, each woman’s pain or frustration has come to the fore; each of us has offered a shoulder. When we got pregnant last year, they celebrated with us; when we lost that baby, they grieved with us again, held us again, hoped with us again. As much support as we often have from others in our community, our time with these friends on Thursdays have become a touchstone, a time when any of us can fall apart if we need to or get a little help lifting ourselves up. And in the process, we have made some pretty great pieces—from necklaces and hats to birdhouses and superhero capes, the four of us in our productive and protective little bubble, have created incredible art.
Early on in these Thursday meetings, another mom friend joined us one night, and as I sat working on one of my drawings, she said, “Well, at least you have time to work on your art now.” I nearly dropped my pen. Everyone fell silent. At the moment, I was hurt and I was livid, and I couldn’t understand trying to find a bright spot in the greatest tragedy of my life. But I’m beginning to see where she was coming from. Granted, I would give up any creative endeavor to have my son in my arms, and while there are no “at leasts” in the death of a child, if anything positive is to come from his death, yes, art is one of them.
There is something to be said for the beauty that flows from an open wound, of the way pain becomes lifeblood for the creative. This certainly has been true of my writing. There is indeed a gift in being able to create in the wake of my son’s death, a certain closeness I feel to him when I work on a project. It is not necessarily his absence that gives me space to create but the desire to see him in what I’m doing, the longing to feel in some way like he’s near. In those quiet moments when it’s just me and a pen or me and a crochet hook, I can almost hear him; I can sit with my memories of him for hours, and there is comfort, and, yes, even joy in that.
I don’t know whether I would have found all of this without our weekly craft nights, without this specific time set aside for sewing and beading and drawing and weaving of memories and friendships and families. It’s a bit like making time for a workout, these hours we set aside each week to tend to the health of our spirits. Amidst piles of feathers and strings of hot glue, canvasses and yarn, we find healing and solace and the powerful bonds of friendship. These ladies did a lot more than distribute the weight; they somehow helped make the carrying of it inspired.
Today, we have another guest blogger, Ali, a friend and former colleague with a beautiful voice and a message I think many of you will identify with.
This morning I shuffled to the kitchen with my toddler straddling my hip. I mechanically grabbed a bag of bagels and was about to drop one in the toaster when he grunted and pointed, indicating that he wanted to do it himself. He clumsily wrestled each half in the slots, pushed down the lever until it clicked, and then peered eagerly inside the toaster to watch the coils heat up. He waved his hand over the top and told me, “ah” (hot). When I began to walk away, and he grunted more urgently, letting me know that he intended to watch the entire toasting process from start to finish.
Remembering that it was snack-sharing day at my daughter’s school, I rummaged through the pantry and pulled down the air popper from the top shelf. My son’s eyes lit up as I carried it to the counter. They said, “What is this marvelous thing you’ve been hiding in there?” We carefully poured in the kernels, and he gazed through the plastic top as they began to swirl around and around. I could feel my own excitement begin to swell despite myself, as I anticipated his reaction. And then the first one popped and flung itself from the machine into the bowl. “Pah!” he shouted, grinning like a maniac. “Yes, pop!” I told him. We watched the bowl fill, never taking our eyes off the magical appliance.
Like many of the mothers who deeply felt his loss, I didn’t know Caemon. I met him once when he was a baby, long before his illness would draw me into a meaningful friendship with his mother. Despite my not being a person in his life, I have felt that I know him through the stories and photographs that have both broken and lit up my heart. It is the eccentricities of children that always enchant me far more than their cute faces and other more obvious perfections. Caemon’s love of appliances, his personal relationship to inanimate objects, is one of my favorite things about this boy I never met. I will never tire of hearing about the way he danced with, cradled, nursed to health, gave names to, and befriended appliances at home, and then later in the hospital. I loved seeing the way his mothers embraced this charming, quirky passion he had and how well they understood the deeper needs he was communicating through these “relationships” he formed. Undoubtedly, his initial love affair was sparked by the inborn curiosity that children arrive with, (and that we often lose, sadly, in adulthood) and the simple magic they find in the flipping switches and the setting of things motion.
This morning, as I watched my son’s eyes fixate on the red hot coils of the toaster and the whirring of the popcorn maker, I realized how actually “unquirky” Caemon’s attraction to household appliances really was. I found myself thinking, “Yes, Caemon and August! There is magic and mystery and even a bit of power in these appliances. There is wonder in the world. There is wonder right in your kitchen pantry if you just pause long enough to let it in.”
The morning that Caemon was having a stranger’s healthy marrow put into his body, I woke up at dawn and went out on the deck where I had an antique birdcage hanging. The wisteria that grew along the railings had coiled itself around and through the birdcage in a way that was too beautiful to disrupt. The deck faced the east where the sun was rising, and the beams of light began to shine through the cage and the cracks between the vines. I took a few photos of it. I thought about the profound nature of life and of dawn, and I felt blessed to be awake to see it. I visualized Caemon’s body being flooded with light and health and comfort. I promised myself to be mindful of each dawn, to pause for a moment when the sun rises and to remember that in life, the sunrise is really all that matters. There is wonder in the world. There is wonder right on your back deck if you just pause long enough to let it in.
When Caemon died, that birdcage out on the deck became very tied up with him in my mind. Each morning it said, “Live! Love your children! Don’t worry about trivial burdens!” The last time I went to visit with his mothers, I got tingles when Jodi showed me the beautiful birdhouses she’s been making as she works through a grief that will never be done. There are so many metaphors to be made from birds, birdhouses, birdcages, and it seems that there is a kind of magic in the way this imagery manifests, appears, reappears and overlaps in my life and in the spaces left by Caemon, a boy I didn’t know.
I don’t know how these things connect, and I have sat before this computer for days, trying to figure out how these pieces weave together. There are so many ways that Caemon flutters and buzzes around my head from time to time, and they are momentary and fragmented and not neatly tied together. He reminds me to hold my children tight, to never run from a grieving friend, to donate blood and gifts to children’s hospitals, and to stop and pause in reverence to toasters, birds and to the rising sun. This morning he reminds me to really feel the weight of my son’s legs around my hip, to marvel at the electricity and heat running through our daily lives, and to take long moments to believe in the everyday magic of ordinary things.
When Caemon was diagnosed with leukemia, we entered a world that felt so isolated. Of course, we were isolated. We were in the hospital on literal “isolation precautions” because he had a cold and because he was so very sick. And even though we had family and friends coming together to help us in any way that they could, we had entered a world that no one else we knew had entered, that dreadful club of pediatric cancer moms.
I’ll be honest: initially, I avoided all of the other parents in the hallways at the hospital. I didn’t accept that we belonged there or that I was truly one of them. In mind, I was still convinced that all of this was going to turn out to be a big mistake, that he was going to have some strange virus, and before we knew it, we would be on our way, marveling at what a close call we had had. But it wasn’t a close call; there was no mistake. Our son had cancer, and we had overnight become cancer moms.
In those early days—all through his treatment, in fact—I’m ashamed to say that I did not want to hear from parents whose kids had died. I didn’t want to be reminded of my own child’s horrible odds, odds that we weren’t talking about, but it was unavoidable. A certain sign would appear on children’s doors when they were dying or had died. “Code whites” were called when kids stopped breathing, or worse. Reminders of our son’s mortality were all around us.
People asked if I had read the blogs out there, the other cancer mom blogs. Some nurses warned me against it, that getting into the headspaces these other parents had could be really detrimental to our desire to be positive. I did avoid them for the most part, and then, as I kept writing to update people on Caemon’s status, I realized that I needed to write a blog that wouldn’t be so scary to find, that other parents might actually benefit from reading, and that is where all of this was born. What I couldn’t have known was that this little bit of effort would prove to be a great connecting force to other cancer parents, and later, to other bereaved families as well.
It wasn’t long after Caemon died that we started receiving the occasional message from a family whose child was recently diagnosed with JMML. In those early days, it was hard to know how to be there for anyone who was just starting this journey, particularly when our child had had the worst possible outcome, but I sent resources, talked with parents over email, even sent a few care packages to parents in the hospital. It became evident in those moments that I had something to offer and that it felt good to give to parents who were in this horrible place we had been. It pulled me out of my own agony for a short time, and any reprieve from that was welcome.
A few months after Caemon died, I learned that the son of a doula classmate of mine had been diagnosed with leukemia, and he was being treated at UCSF. I reached out to her, not sure if she would want to hear from me given my son’s outcome but also knowing that there was no other choice. When someone’s child gets cancer, the worst thing to do is remain silent—but we also knew the ins and outs there. We knew that if she wanted the support, we could help. We made trips to meet her outside of the hospital (it was still too fresh to go inside), and we brought little care packages, bought her coffee, and mostly, we sat and talked, listened to what was happening, offered tips on how to make life a little easier. As hard as it was for us, and as hard as it must have been for her to face two moms whose own boy had died of leukemia, an important friendship was forged, one that would be even more vital as her own son relapsed and then passed away a few months ago. She told us a few times throughout the course of her son’s treatment and as he was dying that she looked at us with hope, that in seeing us alive in the world without our son, she knew she too would be able to live on without her son. And while she has her own path to walk through her grief, I see her doing it. I see her finding life through the anguish of her lost boy.
The number of bereaved parents who have contacted me, who have taken solace in my blog or in our direct communications is sort of surprising to me now. It’s not that I have any profound wisdom to offer them. I don’t know what it’s like to lose a baby just after he’s born. I don’t know what it’s like to lose a twenty-year-old child to suicide. I don’t know what it’s like to have a child die suddenly and unexpectedly, but I do know grief and how it festers and how, like a persistent toddler, it demands to be acknowledged. I know how crippling it is to live without one’s child, how desperate one feels to simply know where that child is. I know how desperately bereaved parents need to be seen, how their children need to be remembered, and how, more than anything, they just need people to be there, even without the “right” words to say.
I never imagined that this would be a part of Caemon’s legacy, that part of my dedication to honoring him would include honoring all the children I know of who have died while becoming a listening ear for their parents. But it also makes sense.
In the last eight months or so of his life, Caemon, when seeing me sad, would say, “Mommy’s sad. Come here, Mommy. I will comfort you.” He would hug me, pat my back with his little hand, sometimes even hold onto both sides of my face. “I’ve got you, Mommy,” he would say. That little nurturing soul always made me feel better.
So I guess when I reach out to these parents, when I respond to their calls for help, I’m doing a little of the same. I’m letting them know, I’ve got you. I’ll be here. Because childhood cancer and bereaved parenthood are dark, lonely places, and if I can lend a light or a hug or a listening ear, it’s what I’ve got to do. No one should walk these paths alone.