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.

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.

Take 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 been; 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.

The 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 forearm 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.