A few weeks ago, when Caemon started to feel pretty crummy from his conditioning treatments, he began protesting the use of his name. I would call him Caemon, and he would say, “My name is mean!” It was odd, and we couldn’t quite figure out where it came from, but all of us kept calling him Caemon because in our minds, it’s a perfect name–and what else were we going to call him?
As days progressed and Caemon felt worse and worse, and then transplant day came, and Caemon saw a lot more morphine, a lot more medications, a lot more misery, he protested loudly any time either of us mentioned his name. There were a few occasions when we tried to explore this further. I would ask, “Why don’t you like your name?”
“It’s not my name,” Caemon would say. “My name is mean.”
I tried a different approach, “What is your name then? If your name isn’t Caemon, who are you?”
“Nothing. My name is nothing. I’m nothing.”
This happened more than once, and every time, my heart would break a little, and I would feel a little more worried that something terrible was happening to our son’s psyche. Occasionally, I tried to tell him, “Of course you’re not nothing! You’re my little boy!”
Nearly every time he would retort, “I’m not a little boy. I’m nothing.”
Hearing this once was hard, but hearing it again and again prompted Jodi and I to seek out all the help we could find from the staff here. Recounting these conversations a few times, trying to describe our son to people who didn’t know him yet was all it took to realize exactly what he was doing, and soon my sadness turned to awe.
Caemon isn’t Caemon right now. Of course, we know this to some degree. He’s a caterpillar in a cocoon, a hibernating bear cub, a special little being in the state of becoming, but he’s not Caemon. But that isn’t what Caemon was saying entirely. What he was trying to tell us over and over and over again is that he feels nothing like the Caemon he knows. He doesn’t feel like a little boy or my son or anything familiar, but most of all, he doesn’t feel like Caemon. It’s hard to feel human without eating, drinking, walking around, or even talking. Add morphine and fevers and the need for blood on a regular basis on top of this, and I can’t imagine any of us would feel ourselves. Caemon isn’t Caemon because he doesn’t feel like himself. It’s as simple and as complicated as that.
We have started to reflect this back to Caemon a little, to give him words to cope with it. When he says, “I’m not Caemon,” we respond with “I know you don’t feel like Caemon right now,” and this seems to resonate a little. One night, a nurse called him Caemon in the middle of the night, and he replied, “I’m not Caemon. I don’t feel like Caemon.”
The other night, when my son wanted to stay awake much of the night, the name issue came up again, and he told me not to call him by his name. Instead of trying to push his name on him anymore, Caemon and I sat in his bed and brainstormed new names. I recommended his middle name and various terms of endearment we use with him, but he was not interested. Finally, I suggested that since he sometimes likes to be called Caemon the Croc maybe he would like “Croc” instead. He smiled. “Can we call you Croc?” I asked. He nodded. For the moment, he liked it.
Today an ultrasound technician came into our room to look at Caemon’s liver. It shouldn’t have surprised me when she asked him his name, and he replied, “My name is Croc.” This woman smiled and called my son Croc through his entire exam. He responded to the use with pride.
I have been told that the older children going through BMT often sleep through much of it. They would rather not remember it or experience it, so they protect themselves by sleeping for days on end. Little ones like Caemon, however, don’t want to miss out on life, so they stay awake and go through it all. Unfortunately, this means feeling that not-me feeling a lot, and it means facing what even adults would find terrifying head on, lash-less eyelids wide open. Because there are so few comforts for someone feeling so miserable, if having a different name makes a difference until our boy beats this disease and recovers with new, healthy bone marrow, then I’ll be the proud mother of a fierce little crocodile for as long as it takes.