Thirty Days of Caemon–Day 29: A Digital Sanctuary

Blog1I 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.


4 thoughts on “Thirty Days of Caemon–Day 29: A Digital Sanctuary

  1. Dear Timaree, Jodi, and Caemon

    I’ve been following these precious 30 days with love, joy, deep sorrow, and gratitude for the knowing of your family, albeit at a distance. Some posts have made me smile, others have broken me open but every post has solidified in me a knowing that love is worth whatever pain life brings. Having lived through the death of my only child and husband I hold the pain close to my heart because it grew from such a deep love. I wish we could have kept our sons and I’ll never understand why your darling boy had to suffer.

    Caemon, you are with me every night when sleep won’t come, on the days when I ache with longing and on the days I smile as I think of you as nurse Caemon.

    Thank you all for the gift of sharing your story, for introducing me to Jack Jones and for things beyond words. I know you’ve read this before but I feel the urge to share again the strength and love you imbue in me.
    With loving gratitude
    Tricia xxx

    • Tricia,
      Thank you for your beautiful words and for reminding me of that precious poem. I read it every few months, and it slays me every time with its poignance and pain and searing beauty. Thank you for thinking of our boy. I’m too am so sorry that you have endured such loss. I will always be grateful we met, never for the reason.
      Sending love to you,

  2. Today we took Aurora and Templar to a nearby park to play. As we were walking in, Templar bent down and found a penny. When I told him I believe pennies are messages from heaven, sent by those we love and miss. Templar smiled. We decided Caemon sent it to us. We could almost feel his spirit at the playground. I personally am hoping you continue your writing. As you know, I lost a 3 year old brother to leukemia in the 1950’s. Somehow reading about Caemon and the love of his family and friends, helps me deal with that loss. I always wondered what Johnny would have become. For now, he too is an angel.

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