welcome back

A few months ago, I started attending a prenatal yoga class one evening a week. It’s a different kind of class in that we share tea and conversation following our yoga practice, and much of the conversation, as one might imagine, revolves around pregnancy, child-rearing, and general mom concerns. It’s a lovely time for these women to connect with others who are facing similar experiences, whether first-time motherhood or negotiating the waters of second/third-time parenting.

In the first class I attended, I did share that I had a child who died. It seemed appropriate because we were asked to share whether we had other children, but I didn’t say more about it. At the next class, over twice as many women attended, and I chose not to share my story. I didn’t pretend to be a first-time mom, but I didn’t bring up my son dying of leukemia either. So when it came time for our tea and conversation following the class, and a woman was struggling with getting her nearly-three-year-old son to sleep, I wasn’t sure what to do. I had advice, experiences to share, and I wasn’t sure whether to share them as though I had a living child or to stay quiet lest I bring up my son who died and inadvertently shift the focus to myself. I sat and nodded in recognition of her plight, and eventually, our teacher noticed and said, “Timaree, it looks like you know something about this.” It was an invitation. I shared from the experience I had of a child who preferred not to sleep, all while staying focused on the mom, avoiding my own story, pretending if for a few minutes to be one of these second-time moms, even though it felt a bit foreign.

At the end of class, the teacher spoke with me, thanked me for joining in the conversation and sharing my bits of wisdom. I told her that it had been a long time since I had sat in a group of moms talking as a mom, that it was nice to share. She placed her hand on my shoulder, looked warmly into my eyes, and said, “Welcome back.”

Every time I think of that moment, I tear up. Since Caemon died, Jodi and I have wanted to “get back” to parenting. We were just getting started when he got sick, just finding our groove. We loved being the moms of a curious little boy; it was such a singular joy, our primary focus. When he died, not only did we lose our beloved son, but we also lost this enormous piece of our identities. People reassured us we were still mothers, and in our hearts, we felt we were, but we didn’t live the lives of mothers. We haven’t for two years and five months. There have been no bedtimes to negotiate, no meals picked over by four- or five-year-old hands, no loads of small clothes to wash or toys to put away, no scraped elbows to kiss or hurt feelings to hug away. Mothering Caemon has turned to remembering, longing, grieving.

Here we are, though, less than a month away from meeting Caemon’s little sister, and all signs point to us getting back to parenting. But what does that mean for us? We won’t be starting again where left off—and I think for a long time that’s what “getting back” to it meant for us: reading the books we had just discovered with Caemon, repeating our favorite family inside jokes, making muffins on a lazy Sunday while our son tried to lick up all the batter; it meant getting back to mothering the boy we knew so well. It has taken months for me to grasp that getting back to it is really starting over—starting with a whole new little person, a whole new perspective of parenting, and in that, there is both joy and grief, anticipation of the new and longing for the familiar—always this duality of emotions.

As this pregnancy has progressed, I have met other expectant parents—some of them first time moms, some experienced parents with small children to consider—and I simultaneously identify with both sets and none of them at all. I have all the “luxuries” of being pregnant and preparing for a newborn without parenting another child. My wife and I can spend quality adult time together, I can nap whenever I like, I can be as lazy or as productive as I like because I don’t have a living child to consider. But because I am not a first-time parent, I have the wisdom of experience, the serenity of knowing I don’t have to worry about swings and bottle warmers and having the perfect nursery, of knowing that birth doesn’t have to be scary, and more importantly, that we can do this.

Then there is the other side of it all. We have hand-me-downs from big brother–toys, clothes, his precious books—without the big brother attached. There will be no wondering where Caemon should spend the night while we are at the hospital, no first meeting of brother and sister, no little boy jealous of the time his moms spend with the new baby, no watching two siblings loving each other as only siblings do. Coupled with that I have so many of the fears of a second-time mom: the guilt of giving my thoughts and love over to another child, of feeling like I’m somehow neglecting my first child for the other—of forgetting the little details about my son: how he smelled, how his cheek felt under my lips when I kissed him good night, how his laughter rang throughout our home. I worry I won’t love my daughter enough, that she won’t know the best of me, that she’ll always be trying to access that part of me who died with Caemon.

I suppose some of my worries aren’t unlike those of second-time parents at all; I just happen to parent a first child who no longer walks this earth. He was my first love as a mom, and he always will be. Certainly I will love his little sister. Certainly I will continue to love him.

I am not getting back to the parenting I once knew, but I am rejoining the world of mothers of living children. I am growing a little girl in my belly who is likely to split my heart wide open again, who will remind me of her brother in some ways and in most ways will be her very own being. I am soon to meet this soul who will indeed welcome me back to the most treasured role I have ever held. I have her brother to thank for showing me the world through a mother’s heart; I have her to thank for bringing me home again.

Thirty Days of Caemon–Day 30: The Marston-Simmons Family

There were many weeks during Caemon’s treatment when Jodi had to go home to teach for a couple of days. It was so hard on all of us, and especially for Caemon. As he started to understand that she would return, he would say on the nights she wasn’t there, “Mommy, an important part of the Marston-Simmons family is missing!” I would agree, and we would try to talk to Mama on the phone, easing his worries a little, letting him know she would be back. It heartened me to know that our family unit was so important to him, and it saddened Jodi and I both that he had to know what it felt like for one of us to be missing for any length of time.

When Caemon died, though, the most important part of the Marston-Simmons family was missing, and he has been missing for two long years. Before Caemon, there was no Marston-Simmons family. We were Jodi and Timaree, and while we had been together for eleven years when Caemon made his arrival, we were always a couple, never a family.

Caemon made us a family.

As he gained more language, he loved calling us the Marston-Simmons family. He was proud to be a part of it. All sorts of things were named for our family. There was the Marston-Simmons Family book and the Marston-Simmons family song. Our family was his world just as he was ours.

Since the most important part of the Marston-Simmons family has been missing for so long, we haven’t felt much like a family, even though we most certainly are. We have gone back to being a childless couple, each with our own last name, no small hyphenate to bind us into a familiar family structure. It has been two years of anguish, two years of feeling hollow, two years of missing being a family.

But all of that will soon change: I am pregnant with Caemon’s baby sister. She is due to arrive in late July, and we are so excited to meet her.

There is so much wrapped up in having another baby. There is the return to the family structure for which we have so longed, yes, but there is also an awareness that this little girl will not be Caemon. We cannot expect her to be. Of course I hope to see some part of him in her—maybe something of his twinkling eyes, his smile, his laugh—but she may be nothing like him at all, and I’m also ready for that. You see, one of Caemon’s great lessons to me was one of accepting a child for whomever he or she happens to be.

By the time I was pregnant with Caemon, Jodi and I had been talking about having a daughter for years. We were both fairly certain we would have a girl first, which made learning that we were having a son surprising to say the least. The beauty of all of that was that our son was just who we needed. Having a boy after all those building expectations of a girl allowed me to let Caemon be Caemon. Jodi and I celebrated who he was, whether that was nurturing and creative, rough and physical, quiet and introspective, loud and opinionated—and he was all of those things and more, and all of those qualities made him perfectly Caemon.

I must admit that a year ago, I could not fathom having a daughter. I’m sure that I hoped to have another boy like Caemon. Who wouldn’t want another sweet, articulate, wise, and loving boy like him? But once again, life is handing us the child we need, and once again, I can apply that lesson that Baby Caemon taught me: that first and foremost, we must let this child be whomever she is meant to be, to honor that in her, to love that she is one of a kind–just like her brother.

There is so much of this I wish we were sharing with Caemon. I think he would have been proud to be a big brother. I think he would have been amazingly helpful. I think he would have read to his sister, comforted her, loved her, and I know she would have adored him. Instead, we have the task of helping this little girl love and know a brother she will never know while also working to help her have a normal life—as normal as it can be. But most of all, I suppose I have to let go of the fear that comes with having another child—the fear of losing her, the fear that I won’t love her as I loved my son, the fear that somehow she will always live in his shadow. To parent Caemon’s sister, I have to lead with love, just as he taught me for three and a half years. Caemon’s legacy will most assuredly live on in our daughter.

And he may live on in her in very real ways. Recently, I have read some mind-blowing articles about fetal cells. Scientists are discovering that during pregnancy, cells from the fetus cross the placenta and into the mother’s blood stream. Their research has shown that those cells may take up residence in the mother’s blood stream, her brain, even her heart. They may act as stem cells and help repair damaged organs, prevent disease, and do a whole host of things that we never imagined. But more than this, it is believed that some of those same fetal cells, the cells of a woman’s prior pregnancies, very likely pass into the woman’s future children.

Yes, our little girl may very well carry a physical part of Caemon with her throughout her life. In so many ways, this tumbling, kicking, lively little girl in my belly is her brother’s living legacy.

The Marston-Simmons family will always be missing a very important member. We will always wonder how Caemon would have completed our foursome, what sort of big brother he would have been, what sort of grownup son he would have been. We will always have a hole in our hearts and our lives and our family where that boy should be. But we know now that the Marston-Simmons family did not die with Caemon. It couldn’t. What he helped create was the eternal magic of family, a space for two moms to love both of their kids, one in this world and one beyond.

The Marston-Simmons Family, Part I

Baby Sister

Thirty Days of Caemon–Day 29: A Digital Sanctuary

I have been a writer for as long as I can remember. In grade school, I published stories. I would sit outside at our home in the Sierra Nevada foothills and write while pondering the trees and the sunset. When I got to college, pursuing multiple degrees in English was not much of a stretch, and teaching writing was no stretch at all. I have always taken comfort in the written word. A life-long introvert, my best processing happens between my mind and a pen or a keyboard (I have long joked that I hold a good percentage of my brain in my fingertips).

When Jodi and I started the process of trying to have a baby, it was the early days of blogging, and I began finding the blogs of women working to create their own families, women who already had, and I knew very quickly that we would chronicle our own journey toward our family. And I did. With our first blog, I wrote about every disappointment and triumph. When I was pregnant, I maintained a pregnancy journal on that blog, complete with ultrasound images and pictures of my growing belly, and when Caemon arrived, I had plenty of new material. I wrote about his birth, the joys of new motherhood, even the struggles we faced as a two-mom family. Just as I have spent my whole life writing, Caemon’s whole life has been carefully recorded, albeit primarily anonymously, since before his conception.

When Caemon was diagnosed with leukemia, I was obviously in shock, but I still had to write. I wrote on my old blog that we had taken up residence in a children’s oncology ward. I wrote that Jodi and I had become the mothers of a boy with leukemia. My readers came out in droves wanting to help, but I couldn’t spend the time there that I once had. Jodi and I learned quickly that we needed a means of communicating with family and friends, so instead of using that old anonymous blog, we started up a CaringBridge site. It’s what people were doing, so we gave it a try. We could write brief updates there, share the occasional photo, receive donations, and manage the page pretty easily. And it was there that I began writing about Caemon’s illness. There was something keeping me from really writing though. I felt restricted to a just-the-facts sort of approach when I wrote, and while functional, it wasn’t me. By the end of Caemon’s first full month of being a boy with leukemia, I knew it was time for us to have a proper space for sharing Caemon’s progress with our community, and C is for Crocodile was born. Finally, I had found a suitable home for the writing I needed to do through my son’s illness.

If it was space I needed to open up, then open up I did. Writing on a blog again felt like picking up a favorite pen and trusted journal. I found myself writing many nights when I would stay at Family House or when I was awake late after Caemon fell asleep. In the hospital, writing became my escape, my sanctuary, my cozy blanket and warm cup of tea. On those nights when I wrote, often in a dim room with only the lights of IV pumps and the glow of my laptop illuminating my space, I could find a little peace. I might cry, even sob for awhile, but I would often wade my way through whatever trying moment we were experiencing, and I would find enough comfort to be able to get some sleep. The therapeutic quality of the blog was tangible.

When Caemon died, I didn’t know I would keep writing. I didn’t know that I would have anything more to say, particularly that I would want to share with the large readership that had grown around this blog, but it took no more than a few days before I started up again. At first, I may have felt a sense of obligation to continue telling his story, but with my first few posts, I discovered that writing still felt like the right thing to do, and as two years have now passed, it still does.

Jodi asked me a couple of weeks into our Thirty Days posts whether I wanted to talk about the future of the blog, what I wanted to do with it, and I instantly bristled. I have certainly asked myself before whether it was time to move on from this space, but no one had openly asked me that question. I searched myself for a moment, and then I replied with certainty that the blog would keep going, that this space was something I wasn’t ready to leave behind, that I didn’t know if I ever would be.

The truth is, I have done some of the best writing of my life on this blog, and in the process, I have received amazing support—even national recognition. I have been asked to write for the blogs of our favorite charities, guest blog with other cancer moms, even write about Caemon’s medical play. The honor of being asked to write is something I only imagined as a young English major. But honestly, even without any of that recognition or the kind comments here or the many boosts to my confidence, I would still write because through this blog, I have found a path through my grief that works best for me. I have been able to capture the most challenging time in my family’s life with accuracy and detail and authenticity.

When I started C is for Crocodile two and a half years ago, it was a place to chronicle my son’s journey through cancer. I initially intended to shut the blog down after Caemon was cured. I thought I might use it for a year and then leave it up to remember that lost year we spent with leukemia. I never imagined I would share his obituary here or the story of his death. I never imagined I would write about the agony of living without him, the beauty of a community coming together to hold up what remained of our family, the small joys we might find in celebrating his life. I never imagined this space would feel like such an extension of myself. For an introvert to take solace in a place where, at times, thousands of people are watching seems strange, but this is Caemon’s Mommy’s home, and so long as I am alive, I will be the mommy to a little crocodile who changed the lives of every person he touched, people quite literally all over the world.

So this blog, too, is part of Caemon’s legacy. It helped me find a public voice. It helped us build a community. More than that, it allows us to share the magic of our son with the world. C is for Crocodile is here to stay. It may change from time to time. It will likely lie dormant now and then, but so long as this space remains, my son’s story can live on too.

Thirty Days of Caemon–Day 28: Nurse Caemon

From Jodi

One day while Caemon was experiencing pain from his transplant, one of his nurses walked in with a two-chambered medicine pump, from which dangled two silver keys. Caemon pointed at the top pump and said matter-of-factly, “That one is for the epidural.” The nurse’s jaw dropped as she whipped around looking from me to him incredulously. Her expression—which said “did I hear him right?”—was hilarious, and it begged the question, how did he know the pump was used for both morphine drips and epidurals? Obviously at some point, he heard it from another nurse, stored away the information, and pulled it out of a hat at just the right time to surprise and delight Nurse Sally, one of his best buddies in the hospital.

Caemon admired and emulated all of his nurses, or the ones who indulged him, anyway, which was almost everyone. His relationships with his caretakers were extraordinary; with them, he played, he learned, he worked, and he grew. This, I was told repeatedly, was unheard of with kids his age. Usually when nurses walk into the room of a toddler, they are greeted with crying, tantrums, and generally uncooperative behavior. Not surprising, really, given that these kids are tethered to their beds, unable to explore. They are poked, examined, and forced to take oral medications that taste like soap, or worse. How are these children supposed to cope in a foreign environment where they have absolutely no control and no power? Even adults crumple under the strain of long-term hospitalization and treatment. Well, Caemon found a way to cope, to feel empowered, and in so doing, taught a lot of people about what a child is capable of given the encouragement and opportunity.

The first week in the hospital, Caemon was too sick to notice his surroundings, but as he began to feel better, his curiosity took over. He was fascinated with the dangling objects his doctors and nurses hung around their necks: stethoscopes, ID badges, flashlights, etc. One of his nurses caught on to this and gave him a real stethoscope—not one of those fisher price plastic ones, but a real, operational stethoscope—one that he could keep. He very quickly learned how to examine his teddy bears, first listening to the heart, and then the lungs in the back. No one told him how to do it; he just copied what others were doing to him.

He covered his bears with tape and Band-Aids, and before long began acquiring plastic medicine droppers, one of his rewards for cooperating with the oral meds. He hoarded these, collected them in every size and color, and his stash grew so big, we had to secretly thin his cache from time to time. Pretty soon, someone gave him actual tubes with real lines, lines he could “flush” and put caps on. He practiced flushing these lines and listening to human hearts and lungs with his stethoscope, insisted on taking his own vitals, and took particular interest in the nurses’ pagers and phones. He didn’t just play with the tools and gear around him; he was in training. He learned what these instruments were, what they did, what they were for, and he acquired an unbelievable amount of information about his treatment. The focus and intensity he exhibited while working with these objects was truly extraordinary to behold; so was his grasp of what was happening to him.

“I’m pushing the chemo in and the leukemia comes out” he explained once while engaged in his work, his tools spread around him as he focused intently. By this time, he had a toolbox stuffed with every type of medical supply imaginable, from mundane bandages and swabs to more exciting tubes, clamps, IV bags, and supplies too big to fit in his box, supplies sent by RT (Respiratory Therapy) because they also wanted to honor his love of medical play, and my son knew what all these tools were for and how to use them.

How much he understood about chemo, leukemia, IV’s or any of the world he found himself in, I don’t know. But he had the language to ask questions, to listen to the answers, to engage, and to act accordingly. His language skills allowed him to have conversations with people, and I have been told that he exhibited more understanding of his environment than children much older than him.

Timaree and I purchased a set of children’s scrubs embroidered with his name, meant to be his Halloween costume that year, but he was so enthralled with nursing that we gave the scrubs to him early. He was so proud wearing them, and he wore them often, always introducing himself as “Nurse Caemon” when in uniform. His nurses also wanted to adorn him, and one made him an ID badge that looked official, like his; they gave up their flashlights and emptied their pockets of whatever supplies they had, all because it made him happy. It made him feel connected, useful, productive, and valued.

His training advanced enough for him to visit the supply room, perform his own charting at the nurses station with Amber, and to learn to program IV and medicine pumps. Nurse David taught Caemon how to flick the air out of his lines to deal with his constantly-beeping pumps.  He acquired his own patients and gave Timaree and I PICC lines, dressing changes, and whatever else he was in the mood for.

His medical play overshadowed other types of play he had previously been interested in, and when he was allowed to visit the playroom, he showed limited interest in other activities, almost always heading for the medical play area first. He would stock up on supplies and call us over for our treatments. In the hospital, Caemon needed the Nurse Caemon identity, the skills and words that came along with it, and he needed the camaraderie this mutual interest built between him and the staff. He found his own way of coping through medical play and blossomed because of the confidence it helped him build.

Medical professionals know that medical play can be a powerful form of therapy. Or it can be just play, a new set of toys to manipulate. Kate recognized Caemon’s keen interest early on, and in handing him his first stethoscope, handed him a way to feel empowered, and he grabbed on to it. It got him through some really tough moments, and I cannot tell you how grateful I am that he had this to lean on. But even the most seasoned hospital staff were gobsmacked at Caemon’s level of interest and aptitude for nursing. It wasn’t just his verbal skills, but his ability to remember and implement everything he was being taught, even a throwaway comment about an epidural. They have never seen anyone like Caemon before or since, and for that reason, his impact is felt very deeply by them, even now, two years after his death.

We make very few visits to the hospital where Caemon died, for obvious reasons. Last week, we got a tour of the new hospital at Mission Bay while dropping off the book drive donation, and we ran into a few friends who stopped to reminisce about Caemon. They miss him, the most adorable little nurse they ever knew, and to tell us they also carry on his legacy of helping kids cope through medical play. They use what Caemon taught them about the power in having agency in one’s own care. He lives on through them in a very tangible way when they employ these strategies, and in so doing, help other patients cope.

Because this part of his legacy is so unique and specific to Caemon, C is for Crocodile made an additional contribution to Child Life Services last week: a box of blank ID badges, badge holders, colorful lanyards, flashlights, and a dozen sets of scrubs in various sizes—all the dress up gear for the young nurses and docs in training. Medical play at the Children’s Hospital will expand to a new level because of Caemon. How awesome is that?

I don’t know what he would have grown up to become had he been allowed to live, but I know what he was for the last few months of his life: he was a nurse, and a damn good one at that. Epidural indeed!

Below are a couple of Caemon’s medical play videos:

Thirty Days of Caemon–Day 27: Family Heirlooms

It is no secret that family was very important to Caemon, and this is in large part because he had the opportunity to see our extended family quite a bit in his three years. He was the second grandchild born to the family and the first grandson, and our family knew just how much we wanted him. Everyone did. Caemon’s arrival was celebrated by our loved ones, and he continued to be a favorite cousin as the family expanded by yet another grandson the next year.

It should be no surprise, then, that our family carries on Caemon’s legacy in their own unique ways, each of them continuing to love him in his absence.

The summer of Caemon’s diagnosis, before we suspected he was sick, Jodi and I planned a big road trip to the Southwest, and we invited my mom to come along. Caemon was very close to his grandma, so we knew having her there would not only be great for us but a wonderful memory for the two of them. Caemon was a wonderful traveler. He could easily abide long hours in the car so long as he could listen to good music, eat tasty snacks, and engage in fun activities.

And sure enough, Caemon was a great sport. He loved the start of each day as we made our way to each new “nice room” (his term for hotel rooms. He enjoyed having adults in the backseat with him, and we have sweet memories of him holding his grandma’s hand as he napped, watching trains and towns and deserts go by from his carseat, all while wearing his ultra-cool shades. Arriving at each new destination was an adventure in itself. He would explore the rooms, check out their coffee makers and hair dryers, and he and Grandma would often make their way to the hotel’s “warm pool” (hot tub) to unwind from the drive. Caemon loved the time he had with his grandmother on this trip, and she enjoyed getting to know his daily routines, his funny preferences. One day when Jodi and I had run into a store for something, he and Grandma sat in the car together, and he asked her over and over to play Bob Marley. Not quite understanding his pronunciation, she had to ask him a few times what he wanted, but they figured it out, and our boy got to enjoy some great reggae with his Grandma.

The trip was full of sweet memories like these, new experiences that none of us would ever forget. Caemon got to see the Grand Canyon, the San Diego Zoo, Mono Lake, but more than that, he got to experience what it is like to have an adventure with family, and he loved it. We all did.

It must have been the summer after Caemon died when Grandma and Grandpa decided they would start taking the other grandkids on their own adventures. Caemon’s older cousin Bri was able to travel with Grandma and Grandpa to a few fun destinations, and as he got a little older, his younger cousin Zander had his travels with the grandparents too. It seemed that in taking that trip, my mom learned what a joy it can be to travel with children, how rewarding it is to build those memories, and she seems determined to do this as much as she can now.

Other family members have found their ways to carry on Caemon’s memory too. When we were in the hospital, my brother-in-law and sister started the “I’m a Crocodile” movement, sending croc tattoos to anyone who wanted them, urging them to send photos, and last year, they presented us with a book full of those photos of all kinds of supporters—from family and friends to his doctors and nurses to total strangers who were following his story. It’s a book of hard evidence of just how many people have been impacted by our son.

Last year, my brother, a firefighter, started hosting annual St. Baldrick’s head-shaving events with his fellow firefighters. In doing so, he has created a whole-family event. His little boy shaved his head last year for Caemon. My mom and sister both acted as event volunteers. My dad showed up to shave his head. So did Jodi. And they raised a lot of money for childhood cancer research in the process. Each year, Caemon’s uncle plans to do the same, building his events, gaining publicity, and sharing Caemon’s story with those who will listen.

The fundraising doesn’t stop with the adults in the family, though. Even Caemon’s older cousin has gotten in on it. In fundraising for our LLS Light the Night Team, our niece (and her mom) set up a lemonade stand, earning a substantial donation for our team—and in the process, they met neighbors who started their own lemonade stand to add to the efforts. My niece continues to fundraise for LLS at her school in penny drives. She’s really quite good at it.

But beyond the fundraising, the kids in our family carry on in their own ways. His cousin Bri remembers him well, grieves him still, and she tells stories of Caemon. Occasionally, she will come to us telling us she has a memory. She has memories with her grandparents and Caemon that we don’t have, moments she can tell us about that we haven’t heard before. She is a memory keeper. And so is little Zander, who was a year younger than Caemon. He loved his bigger cousin, and while his memories of him aren’t as sharp, Caemon is still a part of his consciousness. On more than one occasion, he has come to me during a family gathering to hug me and tell me he misses Caemon or that he is sorry that Caemon died. To know that these children won’t forget him, that they will carry him with them throughout their lives, even help the younger kids in the family know who he was is one of the most precious legacies anyone can carry.

And just this week, Caemon’s grandpa offered to build us a little free library we have been wanting to put on our street in his honor, another way for all of us to keep carrying on our boy’s love of reading. These gifts from our family—to us, to the rest of the family, to the world around us—just keep coming.

Caemon’s family members are all finding their ways of keeping him alive in ways that are right for them. We share stories. They come to events in his honor. They listen to us talk about him. They keep photos of him around and talk to the kids about him. He is still very much a part of our family and always will be.

On the first Christmas without Caemon, Jodi and I were hesitant to come to the big family event. We wouldn’t have our son; we would feel empty, alone, out of place, devastated. But we wanted to see them, to feel their love around us. My parents have a tradition of putting stockings up for everyone around the mantle, and we all fill the kids’ stockings with treasures. On that first Christmas, I was in such a fog that I didn’t notice his was hanging until Jodi mentioned it. She didn’t know if she wanted it up there looking empty, so she picked it up. But it wasn’t empty. Inside were notes, pictures, and ornaments for Caemon. They had all decided they wanted a way to remember Caemon, and they did. This year, his stocking was full of his favorite chocolates, more ornaments, more notes. I don’t know how long the tradition will last, but knowing that we can trust our family to keep his memory alive, that we can keep him in our family traditions, that we can help the other kids remember him or know him at all, well that’s something sacred.

Caemon loved his family, and they loved him, and in those moments when I fear he may one day be forgotten, I look at all they do to keep him here, and I breathe a little easier.

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Thirty Days of Caemon–Day 26: Caemon and Carol

Today’s post comes from our very dear friend Carol. She was a special friend to Caemon and an incredible support to Jodi and I both in the hospital and after Caemon died. Her presence during Caemon’s treatment and her countless efforts to help support our family in innumerable ways during the course of Caemon’s treatment will always be a treasured gift to us. Below, our beloved friend shares Caemon’s impacts on her.

~~~

I met Caemon before he was born – really, before he even was conceived. Jodi and Timaree wanted so much to be parents, were so sure that this was their path, and so dedicated to making it happen. Their child was a tangible presence before he arrived on Earth.

I was overwhelmed with joy when they shared their news. Timaree was pregnant and the embodiment of Mother, and Jodi equally diligent and dedicated to being Mama. I remember the day they showed me his room, which also revealed his name and its meaning. C A E M O N was spelled out in colorful wooden letters, and a large stuffed crocodile was waiting for him.

When he was born, I visited them at the hospital and got to hold him when he was barely 24 hours old. I never dreamed that just three years later the four of us would again be sitting together in a hospital room.

I  am one of the lucky ones that knew Caemon. I have more treasured memories than I can list here: making cakes for all three of his birthdays; walking along with him in a stroller sucking my finger when he was teething; playing in his room on what turned out to be his last day at home; sharing a special crystal just before his transplant; a magical connection while napping with him just days before he died.  The last treats I baked for him were cream cheese brownies. He loved them. I promised to make them again when he finished his treatment and felt well enough to eat.

When Caemon was diagnosed with JMML, I knew I would be showing up in some big way for this journey. I was so grateful to be able to help: I created his Facebook page, did fundraising, and spent time at the hospital for several hours every week. Those visits were precious and also could be very intense. While I found myself rising to the challenge of this, I was astounded at what I witnessed in Timaree and Jodi. My experience was the tiniest sliver of what they were going through. I am still in awe of the tremendous love that fueled them through more trials on every level than I can begin to describe or imagine. To be able to give even a small amount of support was humbling. They are a testament to the power of unwavering love.

I received so much during this time. Not only from Jodi, Timaree, and Caemon, but from new friendships, relationships that deepened, and the experience of spectacular loving kindness that flowed with beauty and force from all directions. People are capable of such extraordinary love and generosity, and it seems we are just waiting for an opportunity to show that.

My spiritual beliefs include the idea that the Universe has a bigger plan, that we are all connected, and that no matter what happens, there is purpose and choice.  Caemon’s illness and death tested me. I was furious when he died. Why did he have to suffer so much and die so young? Why was his incredible potential snuffed out? Why did his parents, who wanted him more than can be measured and did everything to deserve a happy ending, have to endure this grief? It was so incredibly unfair. But in the end, I still believe in a loving Source and a choice made by our souls as part of a much bigger picture than this one life on Earth. It doesn’t make his absence less painful. But I know that Caemon’s soul still shines, that his short life had and continues to have a great impact on so many, and that because of what happened, more people were transformed without ever meeting him than maybe would have been had he lived much longer. This helps give me perspective and some peace.  In spite of how I still feel about this outcome, my love for and trust in something bigger than us remains strong. The incredible courage of his soul to come to Earth, knowing what was in store, tells me he knew it was worth it. Yes, I wish Caemon were still here. I wish I were making him birthday cakes and cream cheese brownies. I wish his moms didn’t have to live with this gaping hole in their hearts. And I also know his life had a purpose that continues to unfold through his soul, his legacy, and through those of us who are better for having been touched by him.

Recently I had a dream about Caemon. I was in the bottom part of a split-level room, and he came over to me. It felt so lovely to hold him. He spoke to me in a child’s voice that gradually became more articulate and mature. While I don’t remember his words, the memory in my body is of wisdom and comfort.

And then he had to go. He climbed up to the level above me and scampered off with a couple of other children. In my dream, I was okay with that.

Thirty Days of Caemon–Day 25: B is for Books

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.

Delivering the books.

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.

Thirty Days of Caemon–Day 24: Hope

Today, we share with you the words of another guest blogger, Julie Rottmayer, who was our first contact at BloodSource. Julie introduced us to the world of blood donation, a world of caring, compassionate people who rooted for our son through his treatment and honored him after his passing. Julie shares with us how Caemon’s legacy is at work in blood banking and bone marrow recruitment, and she brings in how he has impacted her personally as well. This is a special post from a person we care for greatly. She and other members at BloodSource helped us find purpose in the early days after Caemon’s passing, and in doing so, contributed so much to our healing. 

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It is such an honor to be asked to contribute to Thirty Days of Caemon. Like others who have written, I too have been profoundly moved by a little boy I’ve never actually met.

I was first introduced to Caemon’s story during my work in donor recruitment at a blood bank here in

Drippy, the BloodSource mascot, covers himself in Crocodile tatoos.

Northern California. During this period I witnessed the impact Caemon’s illness and legacy had on blood donation, platelet donation, and registration for Be the Match (the national marrow registration database). I’ve had the privilege to partner with Jodi and Timaree on several blood and marrow drives in Caemon’s honor held on the Sonoma State University Campus. Jodi’s and Timaree’s students, SSU sorority sisters, SSU fraternity brothers, colleagues and friends showed up en mass to donate blood and sign up for the national marrow registry. They stood ready to help recruit and inspire others to do the same. They donned the Drippy Mascot outfit and walked campus. I saw many of them walking on Caemon’s Light the Night team. Because of Caemon, countless lives continue to be saved through blood and platelet donations made in his honor. And in the years to come, students that registered with Be the Match will be called to donate bone marrow for life saving transfusions.

Those who work in blood banking love sharing stories of those who received donations and survived. Who doesn’t love a happy ending? But we also are very quick to point out that stories like Caemon’s are equally as important. They hold a sacred place with all of us. If Caemon had not had access to a safe and readily-available blood supply, his moms would have never had a chance to even hope for a cure for their son. I know first-hand that to a cancer patient and his or her family, hope is everything. It keeps you going through the darkest hours. Hope for a cure. Hope for more time. Hope for one last good memory. One last “I love you”. Caemon, and many patients like him, would never have had the chance to make it to the transplant unit—his one chance of becoming cancer-free—if it were not for the generosity of blood donors. As Caemon’s doctors continue to work tirelessly to unravel the mystery of JMML, blood donation and platelet donation will provide lifesaving transfusions to those children holding out hope that they will one day be cured of this horrid disease. Blood donation provides that hope. Knowing there is a match for your child on the national marrow registry—or perhaps several good matches—provides that hope.

One of my greatest honors I had during my time at the blood bank was to meet and develop a relationship with Timaree and Jodi. I treasure them both. His moms have shown immeasurable courage with their repeated willingness to carry Caemon’s legacy forward whenever asked to do so. They share his story and speak to current and potential blood donors about the necessity of blood and plasma donation. They’ve shared Caemon’s story with high school students, college students, and donors throughout Northern California. They inspire people to continue to donate and join the marrow registry. To watch them in action as they recruit is awe-inspiring. Just try to tell Jodi that you don’t want to donate blood because you’re scared of needles! Or you’re concerned that donating marrow would be a little uncomfortable! I dare you.

Personally, Caemon’s story has really touched me in many ways. When I left blood banking, I definitely carried him with me. As a parent, I have learned to be grateful for my children’s health, even in the most frustrating moments. To enjoy every moment. To leave piles of laundry unfolded on the floor and just play. As a worker, I kept Caemon’s picture on my desk and looked at it every day—those beautiful ocean blue eyes reminded me daily why I was there. Personally, Caemon’s ability to face and explore his fears by befriending them has taught me to try to do the same in many aspects of my life.  I’ve thought a lot of why Caemon’s story touched me so profoundly—why, like so many others who have never met him– I seem to keep his legacy so close in my own thoughts. People he came into contact with during his short life were touched so deeply by him. How do those of us who never even met him know the essence of this exquisite child’s character? His soul? His spirit? Timaree and Jodi are so eloquently and fearlessly able to share their son with us that his legacy lives on so powerfully through their words and actions. They make us all want to be better people. To take action. To contribute something—a children’s book, a pint of blood, a two mile Light the Night walk. Fueled by the love for their child, they have shown up and shared his story. There has to be times when this is devastatingly hard. But they do it anyway. As his legacy work continues, and lives are changed—and saved—we should be profoundly grateful for them for being such brave and devoted guardians of their beautiful boy’s legacy.

Thirty Days of Caemon–Day 23: C is for Community

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.

Thirty Days of Caemon–Day 22: Leading with Love

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.

A boy and his coffee maker.

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.

Caemon snuggling a fan he met in the hospital waiting room.