secrets

Below is a post written by Jodi.

I get credited with a number of positive traits like strong, capable, generous, and even inspirational. What if I told you that those are lies and you shouldn’t believe them? What if I told you that I am not at all strong, in fact that I am permanently broken and only a fraction of the person I was four years ago. What if I told you that I am sometimes incapable of even the most mundane tasks? And that what you see is what you want to see projected back. We all want to read the story of the hero who overcomes insurmountable odds, inspiring us to overcome our own sorrows and regrets, and I wanted to be that hero. For Caemon, for you, for my daughter, I have wanted to live up to that image. Fake it until you make it, I was told. I showed up to the events, stood on stages and told my son’s story again and again.

Right here on the pages of this blog I lied, or omitted the truth, and sought to project an image of strength and courage. In fact, I was losing nearly every friend I ever had for reasons I couldn’t understand; my marriage was crumbling; my hope dwindling. I drank until I could no more, and I didn’t tell you when I stopped. You might have congratulated me, but I didn’t want the attention on me.

I didn’t want to damage his legacy, my sweet Caemon. Losing almost everything wasn’t part of the story I was trying to write, but it is the truth. In all things, I wish to be truthful. Caemon was the strong one, the generous spirit, the inspirational figure, and I am just trying to be worthy of telling his story.

the beauty of bald

In eleven days’ time, I will be waking up bald in a Las Vegas hotel room. While that may sound a bit like I’m about to be the victim of some urban legend, this will, in fact, be by choice. I will be shaving my head with a group I have wanted to join for three years now: The 46 Mommas. This is a group of cancer moms who raise significant amounts of money for St. Baldrick’s through annual head shaving events. They are fierce and brave and strong and singularly motivated to end the disease that has impacted their children and far too many others. They are clearly my tribe.

No mother ever expects her own child will become that beautifully bald cancer poster kid. I certainly didn’t. I couldn’t imagine my son without his hair, but that baldness became our reality. Caemon was that child. He still is.

The night of Caemon’s diagnosis, that first night we ever spent in a children’s hospital, I remember the hematologist complimenting Caemon’s hair. He couldn’t get over how beautiful it was. And it was beautiful–like corn silk kissed with sunshine. But I also remember wanting to tell this young doctor that he couldn’t have it, as if my protective mama bear instincts were any match for chemotherapy. I  remember that night telling my brother that as soon as Caemon’s hair started falling out, I would shave my head. He agreed that he would too. I felt a tiny spark of power in that decision on a day when I had never felt more powerless. But the head-shaving was not to be.

When Caemon’s hair did start falling out, he had what we called his “hospital haircut.” We opted to shave his head to keep the falling hair from annoying him. I offered at this time to shave my head too. After all, we had the clippers in hand, and I was ready. When I said, “Caemon, what if Mommy has a hospital haircut too?” He yelled at me. “No! I don’t want Mommy to have a hospital haircut!” I was a little surprised, but then I shouldn’t have been. Caemon had a thing about wanting me to look a certain way. There were days when I would come in from staying the night at Family House, and he would point at my various accessories: “Mommy! Take off your scarf and your headband and your jacket and your purse and your glasses!” I think he wanted me to look simple. like I did on our days at home, maybe even disheveled. I think he needed the comfort of a mom who wasn’t going to change in the midst of a world that was so unpredictable; the only constant there seemed to be change. And a mommy with a shaved head was just too much. He needed normalcy. His own freshly shorn head was too much already.

So I didn’t shave my head, but I did watch as my son’s haircut became less a haircut and more the signature look of a child with cancer. At first he still had a bit of stubble, his beautiful widow’s peak still framing his face. He had eyebrows and his glorious eyelashes too. But after a couple of months of his most intense chemo regimens, all of his hair was gone. He looked like a cancer patient.

Caemon didn’t like being bald. He didn’t recognize himself. One of his favorite nurses was a brilliant caricaturist, and he drew Caemon a portrait one night, complete with his bald head. Caemon, in a rare turn from his usual polite self, threw the picture and had a fairly epic meltdown. Later, we gathered that he didn’t like himself bald, and he confirmed this. (This same nurse would later draw a picture of Caemon with a full head of hair in our guest book at his memorial service.) There were times Caemon wanted me to take photos of him with some of the fancy machines that visited his room, and he insisted on putting a hat on for the picture. He needed so desperately to  look more like himself.

I would think about the other kids we encountered in the hospital halls, the teenaged girls who had a much more established physical identity than my three-year-old son, and I know it had to be painful at times for them not to resemble their former selves. But there was a sense of solidarity around it too. When Caemon did finally get his first hospital haircut, we took him for a walk around the halls, and he saw other kids bald like him, and he would comment on their hospital haircuts. Some of his favorite nurses also sported bald heads, and he began to see them as kindrid spirits, asking if he could touch their heads. He needed that baldness to have meaning–not to represent illness and helplessness, but instead to symbolize something more important. His bald nurses were in control, so maybe his baldness could be power. When those nurses were in the room, it certainly was.

But baldness was still not acceptable for Mommy. I broached the subject of shaving my head more than once throughout Caemon’s treatment, thinking he might change his mind, and, selfishly, thinking it would be so much easier for my life in the hospital. He was always just as adamant that I keep my hair, and I respected that.

As strange as it may seem, after Caemon died, one of the clearest physical memories I had was of his bald head. It still is the most visceral, the most easy to recall. I kissed and stroked and held his head hundreds–maybe thousands of times–his scalp smooth, but slightly sticky. I can recall that sensation more easily than I can the feeling of his little body wrapped around me in a hug. It is at once comforting and heartbreaking.

So now, as I prepare myself for this shave, I find myself thinking that he might be mad at me if he were here. I try to imagine what an almost-seven-year-old Caemon would think. Maybe he would have gone with me. Maybe he would have shaved his own head too. Maybe, instead of being mad, he would have been proud of me. All I have are maybes, and then the memory of his protests. But I am still shaving in my son’s name, in his memory. I will say a quick hello to the clippers, maybe give them a little pat like Caemon used to do. And when I am bald, I will admire that my head is shaped like his was, and that my ears stick out like his did. And in my heart, I will stroke his sweet pate, give him a kiss, and remember why work like this must be done.

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Now, I humbly ask for you to support me in my efforts to raise some serious cash to help beat childhood cancer. St. Baldrick’s provides more funding to childhood cancer research than any other private organization. They directly fund the work Caemon’s doctors are doing with his cells, and they are committed to putting an end to childhood cancer. On a very special note, any donations to my fundraising efforts will funnel directly to Caemon’s Hero Fund for JMML research grants, and even the tiniest donation makes a significant impact. I thank you for helping me make my first shave with the 46 Mommas fruitful and memorable. To donate, you can click the link below: Timaree Marston’s 46 Mommas Fundraising Page

 

 

The Caemon Marston-Simmons Hero Fund

Today is Giving Tuesday, a day amidst all of the holiday bustle when people worldwide find ways to give of themselves. So today, we would like to share with you a way that we have been honoring Caemon, a way we can all give in Caemon’s memory.

Just a few months after Caemon died in 2013, I got in touch with a representative from St. Baldrick’s, an organization whose sole purpose is to fund pediatric cancer research, and I spoke with them about ways in which we could honor our son, one of which was a Hero Fund that would be directed to JMML research. In June of that year, Jodi shaved her head at our first St. Baldrick’s fundraiser, organized by Caemon’s uncle. A year later, we did it again, and this time one of Caemon’s oncologists joined us. With that fundraiser, we finally had enough to start our fund.

Today, we would like to unveil to you the Caemon Marston-Simmons Hero Fund. Caemon’s fund will provide grants specifically for JMML researchers as they continue to try to understand this disease. It is yet another way for Caemon to continue to make a difference, another way for him to live on.

But why should you give to St. Baldrick’s on Giving Tuesday? For us, this is personal in so many ways. You see, that same oncologist who shaved his head at our event last summer is also making some truly groundbreaking discoveries using Caemon’s own cells. You can read an article about the important work he is doing here: Rare Childhood Leukemia Reveals Surprising Genetic Secrets (note that the boy mentioned in the end of the article is, in fact, Caemon). His research is funded in large part by St. Baldrick’s grants, and his research is inspired in so many ways by our son. St. Baldrick’s continues to seek out the best researchers in pediatric oncology to ensure they have at least some of the funding they need to understand pediatric cancers.

We want to see an end to JMML–to all childhood cancers. We want these kids to have a greater chance at survival, and we know that supporting St. Baldrick’s is one way we can help ensure that happens. Please join us today in giving to St. Baldricks. Help us grow Caemon’s Hero Fund, and help us support these researchers who want to put an end to this disease.

Thank you!

The Marston-Simmons Family

 

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 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.

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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 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.

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.

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.

In the hospital, Caemon found his own creative streak, once or twice deciding to use the easel and paints in the playroom instead of going straight to medical play. With little patience for realism, Caemon preferred to create in squiggles and lines, circles and spots. We still have his treasures around our home, the most priceless pieces in our art collection.

But the work that others have created in his honor is endlessly touching. There are a few pieces in particular that stand out to us though.

When Caemon died, we needed a vessel for his cremains. We didn’t want to buy something generic. We didn’t want a traditional urn. Instead, we wanted something that he would like, and so, we put the call out, and a friend of a friend came forward and offered to make him a small box. She came to our home just a few days after he died, and she talked with us about him, about what he liked, what his aesthetic preferences were (and, yes, our three-year-old had his very own aesthetic). She spent time with his things, sat in his seat at our big farm table, and she just felt him.

The day before his memorial, the same day we picked up our son’s ashes from the funeral home, she  brought us the box. It was whimsical, sweet, and so very Caemon with his name spelled out in blue, green, and orange letters on the front, words like “dance,” “laugh,” and “cook” written in different textures of rope on the sides and back with corresponding images of cooking pots and hearts, and then on the inside, a wooden blue butterfly—much like the Morpho butterfly—our boy’s soul transcended. And finally, on the bottom of the interior of the box, the word “Live” in wooden letters, along with two fantastic wooden teapots. Complete with a latch on the front (oh how he loved latches), this is a box our son would have treasured. When an error happened with the size of his bench plaque at the Oakland zoo, we were given the original, and so this now graces the top of his box, our own addition.  His is not a marble urn, not a solemn vessel; in fact—dare I say it?—I often smile when I look at his box. It contains my son’s ashes (well, most of them—other bits are scattered in forests and canyons and oceans), but it also quintessentially captures his huge spirit. And we add to this creation from time to time. It contains his tattoos, special stones, and feathers, lots of feathers.

The box has been a reminder of the inspiration our son can be to those who haven’t met him, but we didn’t necessarily know that others were experiencing Caemon as muse in their own art. When a friend contacted me last summer with an urgent need to come for a quick visit, as she had something for us, another gift of our muse-child came to us. She presented us with a fantastic hand-made purple box with hearts, and inside, a ceramic sculpted heart with our son’s face in the center. You see, our friend’s friend is a brilliant sculptor. He makes countless glorious pieces, but just before he encountered Caemon’s story, he had begun making these amazing ceramic hearts, hearts of all kinds: hearts with butterflies emerging from them, hearts with text, each one with its own message. In Caemon’s story, he found inspiration for more. Caemon’s heart is a vibrant purple with a grid of hearts connected by other hearts and a photo of our boy in the center. This artist—Marcanthony L.–was taken with how many people Caemon’s short life—and death—had connected. On the back, he painted, “Healer of Hearts,” a line we wrote in his obituary, a line this artist had never read. For the next few months, as he showed and sold pieces from his “Having Heart” series, Marcanthony would donate a generous percentage of his sales to C is for Crocodile.  He not only created with our son as muse, but he gave in his honor. Our boy’s influence continues to spread.

And then there is the music written for our son. I have mentioned before our very talented musician friends, and one, a composer and cellist and all around brilliant soul, composed a cello piece for Caemon, for us. It is beautiful, intense, and it captures his whole life, from the waiting we did before he was even created to the mourning we have done in his absence. The middle of the piece is bright with bits of whimsy and joy, and it is bookended by longing. She wrote another piece, this one for guitar and with lyrics, which she shared with us on his fifth birthday last year—our son, immortalized in music, and oh how he would have loved it. I find this song playing in my head regularly, bringing ready tears, both for my boy and for the love of this friend who so exquisitely creates in his honor. (See the slideshow we paired with this lovely song at the bottom of the post.)

His inspiration has come to so many people, people who have made gorgeous crocodile gourds and lovely sun catchers, people who have written poems and letters and essays and stories for and about him, people who have written his name in the sand or created nature altars with him in mind, people who have photographed the rising sun and crocodile forms they find in the clouds. He is burned into the hearts of so many, and through all of this beauty, I do see the very imprint of his soul.

I’ll be honest and say I wish Caemon’s life as a muse had come from beating the odds and overcoming the worst of foes. I wish our son had emerged heroic, triumphant, alive from the horrible depths of his disease, that from his victory, we would have been all the more inspired, but that was not to be. The inspiration he offers comes from a boy with a heart too large to be contained in such a small body, a soul too wise to be bound to this earth, a life so full and bright and poignant that it was destined to become the stuff of not just legend but the source of beauty itself.