the things we carry

When Caemon was in the hospital undergoing one of his several rounds of chemotherapy, there was a day I was in the little kitchen set up for parents. Another mom and I were heating up our dinners, recognizing one another by our blue bracelets and Parent/Guardian stickers. She half-jokingly asked, “Not to sound like we’re in prison, but what are you in for?” We talked about diagnoses and courses of treatment for a moment before the talk turned to how long we’d each been in. I held up my bracelet, once a bright royal blue, now faded to the blue of a slightly overcast sky. “Awhile, huh?” she remarked. I think at the time, Caemon had been in the hospital for nearly two months. It had been a long haul, and by the looks of the other mom’s bracelet, her stay had been nearly as long. It was something we did, us parents. The new parents, the dads of brand new babies up on the maternity floor had these crisp bright blue bracelets they wore proudly. Although they were the same bracelets, those of us on 7-Long wore ours like a soldier might wear dog tags. On those few occasions when we were able to go home for a short span, we would leave them on until we walked through the door, and then we would pull out Caemon’s scissors and let him cut them off of us. It was an important ritual allowing us to reclaim a little bit of normalcy.

Marveling at the beautiful red tubes full of new life.
Note the blue wristband and the Caemon t-shirts.

As the months in the hospital progressed, we noticed the long-term parents had more than just the identifying wristband. They had gear: maybe t-shirts having to do with their kids, often a silicone awareness wristband inscribed with something meant to inspire strength, any number of outward reminders of their child’s illness and the fight they were there to endure. Some of the doctors wore many of the wristbands on their stethoscopes at once. One such doctor collected them until a stethoscope was full, and then he hung it in his office and got a new stethoscope. The bracelets were that meaningful to him, and they meant a lot to the parents and kids as well. Caemon loved giving his bracelets away and seeing them on others. “You have a Caemon the Croc bracelet!” he would always note if someone walked in wearing the orange silicone band.  Jodi and I added to our Caemon bracelets by purchasing “Bravelets” for one another. These are orange leather and steel bracelets engraved with the simple phrase, “be brave,” a reminder we both needed and shunned. What other option was there? There is a sense of purpose behind all of this gear, a sense that somehow the energy and awareness harnessed will help heal our children. It becomes sacred, battle armor, something to keep us going.

One would think, then, when the battle was lost, we would put the armor away, that we would move on to something else. What I have found is that nothing could be further from the truth. Parents who have lost a child tend to fear their children will be forgotten. Parents who have stood by their children through medical treatments for an eventually fatal disease don’t know how to give up the fight. So we adorn.

When we went to the bereavement camp for parents of children with cancer, Jodi and I witnessed a wide display of bereavement accessories. There was one family that had t-shirts, sweatshirts, jackets, and hats, all with their fallen daughter’s famous phrase: “One rule: no tears.” Others wore angel pins, necklaces with their children’s names.  Another couple had large Lego man tattoos on their arms commemorating their son. One morning as several of us were having coffee together, one mom raised up her arm and said, “This. This is what I’m about now,” and she began to show us her bracelets, one for her son, one for another child lost to the same cancer, one for parents who were grieving. Everyone had some physical manifestation of their love and grief for their children, for it seems that with bereavement, we don’t lose the armor; it just changes shape.

IMG_9045Take Jodi and I for example: we both regularly wear our Caemon the Croc bracelets, but we also wear our Bravelets, and we wear our pendants that contain bits of Caemon’s ash. On any given day, we might wear a crocodile necklace, or these beautiful bee necklaces given to us by Bloodsource after our talk there. We wear magnetized healing stones, carry crystals that Caemon held in our pockets. We even wear crocodile socks or polka dots, or just the color orange. There are some days when we wear many of these things at once. We’re much more adorned than either of us have ever IMG_9044been; we clang and clink and jangle wherever we go, and all of this to remind us and others of our son. A few weeks ago, at a talk we were giving for the Leukemia and Lymphoma Society, we were given blood drop pins. Jodi and I quickly and expertly donned our pins, knowing we had just added to our collection of these sacred objects we now carry, each of them part remembrance and part albatross.

IMG_9029The temporary crocodile tattoos that Caemon’s uncle has circulated have also been part of our accessory overload. We have worn them on our wrists or our hands until they fade away, and then we replace them with fresh ones. Recently, after a long wait, we finally received real remembrance tattoos, replacing the need for the weekly croc tattoo application. Jodi’s tattoo is a bee pollinating flowers on her shoulder, the shoulder where Caemon would rest his head while they danced and snuggled. Mine is a representation of a caiman on my forearm, the forearIMG_9042m on which I held him as a baby, the same forearm where I held him up on my hip as a toddler, the place where he rested his head when I rocked him to sleep, even as a bigger boy. While these are meant to remember our son, they also pay homage to his love of tattoos, and, of course, they mark us eternally, just as our loss has.

There is so much to the need to adorn ourselves and mark ourselves as bereaved parents. In times past, and in other cultures, people in mourning have had very visible markers. They wore veils or all black or arm bands–something to show the world that they were fragile and shouldn’t be trifled with. Our culture doesn’t allow for this much. Yes, people do get memorial tattoos; they may even put vinyl stickers on their cars memorializing a lost loved one, but for the most part, we don’t grieve outwardly. Publically, grieving is supposed to be expedited. The bereaved are often expected to go on with life fairly quickly, because, as people will remind us, “Life is for the living.” But the fact is that life doesn’t just go on when one has lost a child, and those of us enduring this tragic fate are left to wander what can be a very cruel world. On any given day, a grocery store clerk might be rude, sending us into a tailspin, or a server in a restaurant may interrupt a weepy moment with the need to pay the check, not realizing how difficult it might be for us to move at all, and in those moments, we wish for those veils or those armbands so that there might be a little more gentleness, compassion, or generosity of spirit.

This is why so many of us feel the need to adorn ourselves with reminders. There is also the idea, however, that we want to carry our children around with us in some way. We want them to be known, remembered, even asked about, and the only way we can do this is by calling attention to ourselves with clanging jewelry, flashy t-shirts, an abundance of bracelets, or, yes, even tattoos. One of our greatest fears as bereaved parents is that our children will be forgotten, and we’re determined not to let that happen. That becomes our greatest mission. And so long as we have the things we carry, our babies live on.


12 thoughts on “the things we carry

  1. I never in a million years thought I would EVER have a tattoo, but after we lost our first baby via a second trimester I knew I wanted something. Betsy and I got matching little bird tattoos on our inner wrists. (opposite arms) I love when people ask me about it.

  2. Beautifully written, Love. I will also draw your attention to my red crayon bandaid, slightly visible in the bracelet picture. I will never wear an adult bandaid again. Last week it was a “Cars” bandage for a cut on my finger, and I have an ample hoard from Caemon’s stay in the hospital to see me through all my scrapes and burns.

  3. Once again, thank you for sharing such a personal thing. I will forever be more sensitive and aware of those around me, because of your stories. I brace myself to cry whenever a new blog is shared. I walked at Relay for Life this morning @ 1 am, pushing my daughter (9) who recently broke her leg, around in her wheelchair. We read all the names on the luminaries around the track, and I mentally added Caemon’s name after each name I read. I kicked myself for not having a wrist band to wear. And outward sign that this little boy needs to be talked about, and that his disease needs to be cured.

  4. This post is a precious gift to me. Until this moment I thought I was the only one to wear her son’s ashes in a locket. Some people behaved as if I was dragging a mouldering body part along with me, others gave me the ‘letting go’ lecture. Of course none of these people had lived the death of a child.
    Then there is the precious group, those who just love and accept, even if they don’t always understand. My life is rich and full because of these people. They help me keep my son’s memory alive by sharing their stories and listening to mine.
    Stories are so importantant. By sharing our experiences we not only help ourselves, we help to normalise grief, and bring understanding and comfort to others who grieve. Thank you for the gift of comfort you have given me today.
    I often wish I could sit with you, listen and hold you. Instead I read with loving reverence every word you and Jodi write, and I hold you three in a corner of my heart always.
    Much love

  5. I have never been a fan of tattoos (for myself) and always thought the only reason I could imagine getting one would be to etch a reminder of my child into my body. So I get that, and it sounds like your tattoos are both beautiful and deeply meaningful.

    I can also relate on a lesser scale to the adornments etc – I think in a way you want people to ask about them, so you have an excuse to talk about your beloved Caemon. When Monkey was going through treatment I would take any chance I got to tell people his story. Now that his NG tube has gone and his hair has grown back, there are fewer openings for bringing up his cancer in conversation, and in some ways I miss that. I miss the opportunity to raise people’s awareness and tell his story.

    I still think of you and Caemon every day, and grieve with you, and marvel at your strength.

  6. So well written as always. I am so grateful that you share your walk with the world my friend.

    The other day my husband and I were driving on a long drive and I saw the most amazing sunset that had this bright orange color in it and it made me think of you, of Caemon and his journey. I smiled thinking about all his baby pictures with the alligator stuffy and I smiled because sharing those journey’s with you made me feel good.

    I don’t think people today really understand that while life goes on we still hurt. We still ache and we still need compassion.

  7. I want you and Jodi to know that I will never forget your son. I remember your post about the try that resulted in his conception. I remember your pregnancy and how radiant you were. I remember the full moon view you had from the courtyard when Caemon was born. I remember squishy baby pictures next to his Ikea croc that documented his growth. I remember his health issues and your worry about insurance when he was small. I remember him chanting “I think I can” in the redwoods each time I read The Little Engine. I remeber a picture of him when he was around a year in an orange and white maybe blue striped fleece vest – I think it had a bear on it – he was unbelievably cute and snuggly in it. I remember the shock and anger I felt when he was diagnosed. I remember the hope and pain and struggle and fear of his illness. I’m still reeling after his death. Your son has been branded on my heart and mind and I will never never forget him. xo

    • I love you, Poppy. I can’t even begin to express how much this means to me. Thank you for remembering my boy, our boy. xo

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