Tag Archives: grief

Thirty Days of Caemon–Day 21: Mosaic

From Jodi

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.

Joyful Jodi

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Thirty Days of Caemon–Day Twenty: My Boy the Muse

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.

20121111_125916In 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.

IMG_0126The 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.

IMG_0130The 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.)

IMG_0128His inspiration has come to so many people, people who have made gorgeous IMG_0132crocodile 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.

Thirty Days of Caemon–Day 19: Not My Mom

From Jodi.

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.

Thirty Days of Caemon–Day Seventeen: Sad Ladies With a Glue Gun

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.

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Thirty Days of Caemon–Day Sixteen: The Symbols He Left

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 birdcagedawn 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.

Thirty Days of Caemon–Day Fourteen: I’ve Got You

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.

Caemon comforting a delicious (but sad) pumpkin muffin he made

Caemon comforting a delicious (but sad) pumpkin muffin he made

Thirty Days of Caemon—Day 13: A Family for All of Us

When Caemon was born, Timaree and I transformed from a couple into a family. As someone who doesn’t have a biological family of her own, it’s difficult to explain just how significant this was in rooting me firmly into my life, giving me a purpose beyond self-serving pursuits. I felt a deep obligation and sense of pride in parenting him. I had waited my entire life to have a loving family, the one I had always wanted, and I would be forever changed as a member of the Marston-Simmons family. It’s one of the most horrible aspects of losing Caemon—the loss of our family. Of course, Caemon’s legacy would ensure that we had some incredible people to call family, people who would carry us when we couldn’t walk by ourselves.

Because of our son and the relationships he fostered in the hospital, we have an extended family of beautiful, caring souls at UCSF. Caemon would not allow nurses, doctors or other hospital staff to enter his room without some kind of personal interaction. He wasn’t about to let people prod or poke him unless they courted him with whatever might amuse him on a given day: being allowed to play with their tools and gear or a gesture of generosity (chocolates, usually, then medical supplies). Once he had captured someone’s heart, that person couldn’t stay away, and soon enough no longer needed bribery to be accepted into our expanding hospital family. These professionals learned to interact with him as a person and to share his interests; the more time they spent in his room, the more Timaree and I also got to know them. We formed a partnership with them that would help him (and us) navigate some scary waters. Somewhere along the way, that partnership morphed into a family.

It didn’t start out that way, at least not for me. The sudden, terrifying whirlwind we got caught up in when Caemon was diagnosed almost entirely stripped me of my role as Mama Bear, and I didn’t like it one bit. Let me explain: before leukemia, strangers didn’t touch my son, walk into our home, or make rules about our lives. Before leukemia, we had a quiet, private life with a few friends, a daily routine, and an established protective perimeter around Caemon and our family. Obviously, that all changed, and I had to trust strangers in order to save his life.

It was hard. When the research fellow Elliot Stieglitz (whom Timaree wrote about this week) came to meet Caemon for the first time, I looked at him and said “My son is not a specimen; he’s a little boy. Treat him as such.” The look of shock on his face told me that he had never been confronted like this by a parent. But I wasn’t sorry. I needed to establish that one point with him. You see, Caemon’s disease is so rare that they only diagnose and treat one patient with JMML about every five years at UCSF. As a result, the interest in him was high, and we were visited by a number of curious staff who were eager to put a face to the disease they were studying. It was early on in the process, and I hadn’t gotten to know them, but my Mama Bear instincts are fierce, and I was determined that these people see him, not just his leukemia, but him.

I didn’t know it then, but Caemon would capture their hearts so thoroughly that there was no chance he was going to be treated like a specimen. They would fall in love with him, even the research doc I stunned on that first meeting. I need not worry about him dehumanizing Caemon. No one was immune to our boy’s love and light. The affection he inspired in them amazingly transferred to us. These professionals didn’t just love Caemon, they came to care about me and Timaree as well.  Oh boy did we need it.

We needed Nurse Tall Maggie’s immeasurable competence and loving touch with our boy. We needed Nurse Ann to tell us to go to sleep when we watched over Caemon all night long in BMT. We needed the cups of coffee and other culinary offerings they brought us to keep going on those long days in the hospital. We needed Sally’s silliness, Kelly’s dance moves, Kenny’s compassion, Brie’s attentiveness, Amber’s experience, Amy’s optimism, Abby’s steady presence, Scott’s quiet comfort, and Peggy’s wise counsel. We needed all the people I haven’t listed, all those people who played such an integral role in Caemon’s care. We needed the friendship offered by these people the strength, and the shared sorrow when we lost him. The sadness felt on the pediatric oncology floor when Caemon died would challenge even the most seasoned professionals. They came to his memorial, cried with us, and one of them spoke to the audience about Caemon’s impact on them. She said that Caemon brought the hospital to life and reminded them all why they do what they do.

They are our family; they will remain so forever. They were there for us during the absolute worst experience of our lives. They held us up, celebrated the victories and mourned our collective loss of the beautiful little boy they worked so hard to save. They continue to reach out two years later, to check on us and attend events in his honor. They offer love and sympathy, and never pass up an opportunity to share their favorite Croc memories. In so doing, they help keep him alive, and that is a part of his legacy left to all of us.

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