Category Archives: Caemon’s legacy

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.

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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 IMG_8023haircut 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 IMG_8402himself. 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 abouscrubst 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

 

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three years, five months

Three years, five months. Three years, five months. Three years, five months. 

This has been the refrain playing in my mind since July began. Three years and five months ago, my son took his last breaths.  He has now been gone as long as he was alive: Three years and five months.

I remember talking with another mom just three months after Caemon died. Her daughter had been gone for fifteen years, and she spoke mournfully of the day she was gone longer than she was alive. I remember thinking in that moment that this was a day I would dread. It was something that would loom long in the future. Would I even manage to survive three years and five months without my son? And then longer? Years later, here I am, still living, still breathing, still remembering.

And although this day has been looming in my mind’s calendar for years now, I have had trouble with what to make of it. I can hardly grasp that this time that has gone so quickly without him was the same time he spent on this earth. It feels unreal, but then, so does his short life sometimes.

The first three years of Caemon’s life were the best of mine. He made me a mom, something I had longed for for years, showing me the expansive love that comes along with that role. And Caemon himself, oh how he lived! In the time leading up to Caemon’s diagnosis, our little family was thriving as a triad. With his illness and then death, it was like the worst of eruptions, leaving nothing but a smoldering crater where my joy, my hope, my family, my son had been.

Two years ago, Jodi and I took a trip to Crater Lake–a lake formed in the caldera of a volcano. What was once a mountain is now a crater filled with the most pristine cobalt waters. Trees and wildflowers grow around the rim of this catastrophe-turned-wonder. But Crater Lake, as beautiful as it is, was forever transformed by the eruption that created this hole.  It will never be filled with the same material. It will never again be a mountain top.

This I am learning to be true of myself. In three years and five months without my son, I have not become the person I was before. Three years and five months have not reset me. I am a mother again, but I am not the mother I was with Caemon. That smoldering crater leukemia left is filling with beautiful things, yes, but never again by my boy. And we may be a lovely family of three, but we will never be the family we were, the family we were meant to be.

This week marks three years and five months since Caemon left my arms, three years and five months since I said my final goodbyes, since I drove with my wife back to our home without our healing son in the backseat of the car, three years and five months since the worst day of my life. Such a span is far too long to live without him. That I have to keep going, that he will forever grow increasingly further from my memory’s grasp is a new sort of heartbreak.

Three years and five months were all the days that Caemon lived, and in that time, he taught me to be a mom, showed me love like I had never known, fostered in me courage and strength. For three years and five months, he brought me joy bottled up in a blonde-haired cherub and the sort of laughter and wonder and light that no earthly body could possibly contain. 

Three years and five months was not nearly enough, not for me, but for Caemon, that painfully short lifetime was all he needed–to change me, to change his world.

my golden-haired muse

Tomorrow, I am going to a conference for bloggers, a conference held by BlogHer*, a large blogging organization who chose to nominate me as one of its Voices of the Year for my post “I Had a Boy.” This is an unexpected and huge honor, something that has humbled me to my bones. But it has triggered unbelievably complex emotions too.

As writers, we all want our voices to be heard. As the mother of a child gone too soon, I have wanted so badly for his story to be read over and over by as many people as possible because if they do, he won’t be forgotten. But I can’t help but be saddened that for me to find my voice, my boy had to get sick. For me to gain this recognition, my boy had to die.

My wife is the first to remind me that I have been writing about Caemon since we started dreaming of having a child. I wrote about the long road to getting pregnant. I chronicled every joyful moment of my pregnancy with him. I wrote a three-installment, eight-page story of his birth. And once he was here, I wrote and wrote and wrote about the wonders and trials and triumphs of mothering a vibrant little crocodile.

And when he got sick, when our lives suddenly turned from trying to feed a picky two-year-old to consoling him through needle pokes and dressing changes, I took to writing through my fear, escaping the hospital through my words. When he died, this was sometimes the only place I felt I could turn to handle my grief, a way I could feel close to him and continue loving him because I have always, always written about my beloved son.

I think I have been surprised that through the terror of his illness and the agony of his death, I have done some of the best writing of my life–but I shouldn’t be. What I share on the page comes from the deepest of places. It is honest. It is raw. It is real. In fact, it is more honest and raw and real than anything I have written until now.

It is sacred.

I would never have chosen this path. I would give up every kind comment, every new reader, every mention on another webpage to have my son in my arms again, but that is not the road I am to take. I do, however, get to be a writer, and I get to share the most beautiful story, memories of a magical child gone too soon.

Tomorrow, I will go to this conference with my golden-haired muse tucked in my heart, and when I do, I will honor this precious gift he left me: a voice borne of hope and fear and love and heartbreak, the voice of a mother’s heart.

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*If you are attending BlogHer, I will be part of a discussion at the WordPress booth on Saturday at 3:30. I would love to see you there.

Telling Caemon’s Story

From Jodi:

Part of our duty as Caemon’s surviving mothers is to tell his story because he cannot. His was a hero’s journey fraught with fear, uncertainty, dangerous trials, and ultimately, tragedy.  Viewed through the lens of Joseph Campbell’s work, our boy’s life and death are even more remarkable. For the uninitiated, Campbell identified several stages any mythic hero goes through, beginning with a call to the underworld. In Caemon’s journey, his call came when he was diagnosed with leukemia, and suddenly, his quiet, safe world, so carefully protected by his mothers, was upended. In its place, the underworld of the pediatric cancer floor became his new home (and ours). Once there, Caemon would face many fears; he gave them names and treated them with love; he made allies along the way, other warriors who taught him skills and gave him the battle armor he would need to fight his arch nemesis: leukemia.

Throughout his perilous journey, we have written and spoken about him, about his courage, his humor, his incredible intelligence. We do this for a number of reasons: we tell his story because it makes us feel closer to him; because it helps us remember the details of his personality; it reminds us to stay strong and keep living; it honors him, and in some small way, it heals us.

But we are not finished. The final stage of his journey has not been completed:

RETURN WITH THE ELIXIR.  The hero returns home or continues the journey, bearing some element of the treasure that has the power to transform the world as the hero has been transformed.

When a hero dies before completing the journey, those left behind are duty-bound to return to the Ordinary World and share the elixir. I wish we had a magic elixir from the underworld, a potion that would prevent children from dying of cancer, but that’s not what we return with, at least not yet. We continue to fight on many fronts. What we bring back from Caemon’s Hero’s Journey is a treasure of lessons and wisdom from a three-and-a-half-year-old warrior/hero. We continue to learn them and share them as we trudge through our own journeys. But has Caemon’s elixir of lessons and wisdom “transformed the world”? I think so; his legacy is continually unfolding all around us. Just last week we learned that a supporter ran the Boston Marathon in Caemon’s honor. We saw his picture on a news broadcast about a local bone marrow drive. People privately write to tell us the many ways his journey has transformed their lives. It seems that our son has moved into the realm of myth: the little boy nurse who liked to be called Croc lives on in stories, just as all great mythic heroes ultimately do.

The story that is being written is incomplete, however, without an understanding of how Caemon has transformed the Ordinary World. We are asking people to send us their stories of how their lives, work, relationships with family, etc. have been altered or impacted because of Caemon’s story. Those of you who have been inspired by him are the reason we keep writing, speaking, and sharing his journey. Now we want you to share yours, publicly. Email us with your stories. We’ll share them on the blog and watch his legacy grow.

To email us your story: cisforcrocodile@gmail.com

For more on the Hero’s Journey: http://www.thewritersjourney.com/hero’s_journey.htm

Please let us know if we can use your name (or any part of it) and city/state/country.

busy, busy bees

It has been a bit too long since I last posted, but this is due in large part to the fact that we are starting to be very busy with our work to honor Caemon’s legacy. I would like to share some of our activities and planning with you.

C is for Crocodile–The Organization

First and foremost, we decided on a name for our organization. After seeing so many wonderful recommendations and then seeing some variations on the blog title, it occurred to Jodi and I that C is for Crocodile is the perfect name for our organization, and variations on the title allow us to title different areas of our work under subtitles like “C is for Caring” and “C is for Cure.” We have secured a post office box and have a tiny little savings account designated for this purpose. Now we are working on our 501(c) (nonprofit) status so that we can put everything in the organization’s name.

How you can help:

  • Webpage/Graphic Design: If you are a web designer or graphic designer and want some pro bono work, we would like to put together a nice, shiny website that can serve as a hub for all of our activity. We have already secured cisforcrocodile.org. If you are interested in helping us put this together, please contact us at cisforcrocodile@gmail.com.
  • Fundraisers: After you read everything below, you’re going to see that we’ll need some money to carry all of this out. If you have ideas for a fundraiser or would like to hold one, great! At present, there is a fundraiser happening via two lovely Caemon supporters. They are holding a Pampered Chef event through which they are donating all commission made from purchases to C is for Crocodile. You can visit the event here: http://new.pamperedchef.com/pws/consultantheather/guest-landing/8835923524763. Purchases made via the event site through July 31st will benefit C is for Crocodile.

Book Drive

Throughout Caemon’s treatment, he was the recipient of so much generosity. AT UCSF, toys and stuffed animals came through on a regular basis, and while the playroom had books the kids could borrow, there just weren’t a lot of books coming in on the big gift carts. Because Caemon loved reading so much, and because we value it so much as well, we have started a children’s book drive, which we will hold annually. We are collecting new books for kids from infants to young adults. Once collected, we will distribute these to pediatric oncology units in California hospitals.

What you can do:

Donate books! We are asking for children’s books of all kinds–probably even a few grown-up novels appropriate for kids in their upper teens. You can send them to our post office box: Marston-Simmons, P.O. Box 9214, Santa Rosa, CA 95405. If instead you would prefer to send a gift card from our local bookstore, you can go to http://copperfieldsbooks.com/gift-cards, or from a larger chain bookstore here: http://www.barnesandnoble.com/u/gift-card/379003883. With these, we can go pick out books to fill in any age gaps where we may be missing books. If you choose to send an e-gift card, just use the cisforcrocodile@gmail.com address. We will keep this going until we have enough books to distribute. Ideally, we’ll get these out in the fall.

Light the Night: Team Caemon

Light the Night is an annual fundraising event held by the Leukemia and Lymphoma Society (LLS). This organization provided us with support from a number of different angles during Caemon’s illness, and they directly fund research conducted by Caemon’s doctors. The Light the Night walk is held each fall in cities all around the country. Team members each raise at least one hundred dollars and then join their team for a night-time stroll with illuminated balloons. At this year’s North Bay Light the Night walk, Caemon will be the Remembered Hero and will thus receive special recognition. We will be walking both here in Santa Rosa and in San Francisco. We may also have the very exciting opportunity to donate our funds directly to a researcher. More on this will come later. In fact, we are meeting today with LLS to learn about possibilities for Caemon’s legacy through this organization.

What you can do:

  • Join and Walk: If you are local, and you would like to join our Santa Rosa team, you can join here: http://pages.lightthenight.org/2013/teamcaemon. You needn’t be an athlete to participate; you only need to be able to ambulate slowly for a couple of hours with lots of other really great people.
  • Lead a Team: We are also looking for people to head up Team Caemons in their areas. Being a team captain is very little work (it involved a bit of motivating, some emails–about as much as you want it to involve), but it allows us to spread our efforts to cities all over the country. If you think you might want to start up a Team Caemon in your city, you can also visit this page: http://pages.lightthenight.org/2013/teamcaemon, and click on the link for starting a team in your area. Then, let us know you’ve started one. More immediately, if you are in or near San Francisco, and you would like to captain that team, we need a team set up there as soon as possible.
  • Donate: Of course, if you can’t join one of our teams, you can also make a donation to Team Caemon. Use the links above to visit the national Team Caemon page, and click on any team member’s name to make a donation.

We also have a national Team Caemon for the LLS Team in Training. If you are an athlete, or would like the support to be one, you can join Bree Davidson and others in this effort. Visit the Facebook page here: https://www.facebook.com/TeamCaemon.

Care Packages

Children are diagnosed with cancer every day, and, according to the NIH, about a third of those diagnoses are leukemia. We would like to be able to send care packages to families undergoing a recent diagnosis of rare leukemia, particularly JMML. We won’t be able to send care packages to every family at this point, but given that there are under 50 diagnoses of JMML annually in the United States, this is something we feel we can do.

What you can do:

If you have heard of a child recently diagnosed with JMML, please send their families our email address, or send us some contact information, and we will send out a care package. Eventually, we will put out lists of items that can be donated for care packages, and we will also have fundraising efforts to support this. If you have ideas about this, feel free to contact us at cisforcrocodile@gmail.com.

Other Projects

Caemon Movie: We would like to work with a filmmaker to develop an educational film for those in the medical profession about the importance of medical play. We have a number of video clips of Caemon’s medical play as well as access to his providers who saw directly how his fascination with medical play assisted him through what can be a fairly traumatic experience for a young child. If you are a filmmaker or know someone who would be willing to donate time for this project, please let us know.

And obviously, the book: I have dreams of turning much of what I have written into a book. People have been suggesting this since early on in Caemon’s illness and I certainly feel a book in this. If you’ve got connections in the publishing industry who might be interested, send them my way (I’m not interested at this time in self-publishing).

Your ideas: Of course, I’m sure there are other ideas out there, and we will certainly be working on all of this over time. If you have a project or suggestion you would like to offer for carrying on Caemon’s legacy–or if you have done something on your own, please let us know. We would love to hear from you.

 

 

Thank you to everyone who has worked on these projects with us thus far. We look forward to building our organization knowing we already have so many wonderful supporters out there.