in my mind, we ran away

A year ago today, we woke up in our home as a family one last time. We got into the car together one last time, and we drove to UCSF with Caemon one last time. He was being admitted to the Bone Marrow Transplant Service and would begin his chemo conditioning regimen at 9pm. Before that, he had hours of tests and a fairly miserable scrub-down with a soap containing chlorhexidine, meant to remove as many bugs and outside germs as possible from his skin. His room from then on would be a clean room, one for which we would have to scrub in any time we left the hospital and returned.

Caemon was so cooperative that day with so many things. He brought his medical supply tacklebox, having left his medical supplies at home (even these had to be fresh). He had a chest x-ray and sat so very still, and while that dreadful bath had him protesting wildly, he happily changed into comfy clothes and took a nap with Jodi on the bed while I decorated his new room with trees.

But I can tell you that in my mind that morning, I wasn’t driving him to UCSF. When I woke up early, and he was still sleeping, I imagined staying home with him forever. I dreaded what was next, knowing the transplant itself could kill him. Every cell in my body wanted to hold tight to my little family snuggled up in our big bed and just never go. I wanted to see his hair grow back, watch him turn the lights on and off on our Christmas tree, dance with him free of tubes and hospital beds and worries about platelets. We had spent the last three days baking his favorite pumpkin muffins, going out at night to see Christmas lights on houses (in fact, one we visited all three nights we were home), lighting fires in our little pellet stove, and simply being a family with our own agenda, our own rules, our own space. If Caemon wanted to eat nothing but tuna sandwiches for an entire day, that was what he had. If we wanted to stay in our pajamas all day long, we did. We made messes, cleaned them up, hugged and danced and snuggled and played and read. It was bliss, and none of us wanted to leave it. In those moments, with our son the closest to leukemia-free he had been in who knows how long, it almost seemed possible to just forget about the hospital and just take our lives back.

But it wouldn’t be possible without a transplant. We all knew that. We all knew the leukemia would return with a vengeance in no time if we didn’t go through with it, but the instinct to go anywhere but that hospital was strong in me that day, and I fought it over and over again as we packaged all of Caemon’s clothes in giant ziplock bags, placed his toys in sealed plastic tubs, packed up our own suitcases full of hospital mom clothes, and drove to San Francisco.

That night, after the tests and the bath and after “Sad-Sad Boingy Tube” got hooked back up to the IV pole, and after Caemon and Mama had a nap, and I decorated the room with trees and lights and as much magic as I could muster, we sat together in his room, and we gave Caemon what he affectionately called his special BMT present: a little Christmas carousel that lit up and played music, something he had admired countless times the year before both in a store and in a book we had.  Caemon loved carousels, so to have one of his one was pretty fabulous. He snuggled up by himself in his bed, turned it on, and lost himself in it. For nearly an hour, my son gazed at the lights and mirrors, listened to the music, and watched the little animals spin around and around. When the little bears riding one of the horses would come around, he would kiss his fingers and gently touch them. He did this over and over, speaking softly to the bears. He was a little boy, mesmerized by a holiday toy, and I found myself transfixed by the beauty of the moment, yet saddened too, for beyond the innocent smile and wonder, there was something else in my son’s eyes–a sort of resolve that came with being back in the hospital, hooked back up to tubes, submitting to treatments. To see a sort of knowing wash over him, to see him visibly coming to terms with leaving home and living in the hospital again broke my heart.

Thinking back to all of that now is so hard because I know what he was about to endure, and I wonder if he was anxious about it. I wonder if he had any idea what was to come. I don’t know. I know that it was scary for all of us and that we maintained more hope than I ever imagined could be mustered, that we did everything we possibly could to save our son. A year ago today began the greatest fight of our lives, and while I know I wouldn’t have changed anything, I still sometimes wish we could have just stayed home, lit a fire, and snuggled up on the sofa with a big stack of books and our beautiful, beautiful boy.

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12 thoughts on “in my mind, we ran away

  1. You bring such beauty and light with you everywhere, my dear friend, most especially into times of great difficulty. You made that room as close to home for Caemon as was possible — his carousel-lit eyes make that clear — but I know the effort that took was immense. How soothing those days home must have been… How vital those home-wrapped memories.

  2. Oh friend. This post just ripped me apart. I cannot understand a world that would take this precious boy from his moms. I cannot fathom the depth of your loss. I miss Caemon so much right now, and I only know him through your words and images. I can only imagine the hole in your hearts and lives that will never heal. Sending strength.

  3. I cannot express my gratitude for what you give through your words. Caemon’s legacy reminds me to hold my loved ones closer and to treasure each moment. I keep a picture of Caemon in my journal and it opens my heart every time I see that precious boy. Sending love to you and I would love to see you both again soon.

  4. Oh gosh, how could you not have entertained the thought of running away? I am glad you had that special weekend together. Thank you for your words and beautiful photos. I sure love that boy’s eyes. You can see the sparkle when he looks at the carousel. Much love during this season and always. I’ll light a solstice candle for Caemon again this year, and every year.

  5. So much beauty intermingled with such profound saddness. I ache for you everytime I think of you lovesick and missing your boy, especially during this holiday season. Sending love.

  6. I have been thinking about your lovely, inspirational family often. You all have been beacons of light for those of us who care about you and I hope that the light of the holidays shines brightly on you this year. He was a magical boy and you are magical parents.
    With love,

  7. There isn’t a day goes by that I don’t remember Caemon, and think about you and Jodi. Every time I use a certain password, every time I light a candle, every time I see something that even looks like a crocodile, I send a thought winging your way.

  8. I keep returning to this post wanting to offer a few words, but each time I read these heart wrenching words I experience a sense of some feelings being beyond my ability to express.
    It’s to do with the constancy of hope, the never truly knowing what our suffering child is experiencing, and the giving of love in the face of unimaginable suffering, as shown in Caemon’s precious gesture of kissing his finger and touching the bear.
    With love

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