lessons of a lifetime

My Facebook feed is filled this week with children starting their first days of kindergarten and parents saddened to see their children growing up. There is talk in the air of tearful drop-offs and what to put in lunchboxes. I have seen this week parents with excited children in stores with lists of school supplies gathering crayons and scissors and paper, new school clothes, all the things one needs to have a successful start. They’re all nervous, excited. I stand back and watch or scroll through the pictures, my stomach knotted, my eyes welling, my heart aching. 

Caemon should have started school this year.

Caemon never really got a chance to go to school. No, that’s not true. Caemon went to exactly two days of preschool at a wonderful Montessori school near the university where we teach. He had been going with Jodi for a few weeks to become acclimated, and then the week before his diagnosis, we had two days of drop-offs where Caemon went to school with the other kids and without his moms. We each dropped him off once. We both got to pick him up. I remember watching him before he knew I had arrived, seeing him earnestly helping with lunch cleanup. He was cooperating with the other children, looking so grown up, so capable. Both days, he came home with art projects. He ate all of his lunch. He liked his teachers. He knew the other kids’ names and talked about them.

But then leukemia struck, and he never went back. 

There are many things my son never did, and this becomes more apparent the more we are around the children who were close to Caemon’s age. We have friends whose children began writing letters and soon words when they were three, and watching these children develop written language skills has been surprisingly emotional and bittersweet.

Caemon never learned to write. He didn’t write a single letter.

Caemon never learned to jump. 

He never wrote his name.

He never potty trained.

He never drew stick figures.

He never rode a bike.

And when I think about these classic milestones that Caemon didn’t cross, I sometimes start to worry that somehow, my brilliant boy was falling behind, that he didn’t accomplish what he should have by the age of three years and five months. It’s natural for parents to worry about such things, but it does so little good, particularly when the child is no longer here. Beyond the worry, though, is sadness, a devastation that my son died before he got a chance to do all of these things, before he got a chance to be a normal kid. 

The one message that keeps coming back to me each time I face this regret that he some how missed out is this: He didn’t have time. Caemon had other things to do.

And it’s true. My son didn’t go to school for more than a couple of days on his own, or jump, or write, or draw anything recognizable, but he did do so many things:

He learned how to give warm, strong hugs to people he loved. 

He learned to say, “Excuse me; I have something to say,” when the adults in the room droned on and on.

He learned to tell a story.

He learned to memorize book after book after book and recite them word for word.

He learned to swallow a pill with ice cream.

He learned to make ice cream.

He learned to blow kisses and to receive blown kisses and tuck them into his shirt.

He learned to use “who” and “whom” correctly (although we never once mentioned this or corrected him in this particular usage).

He learned how to help other children who were also sick.

He learned to gently pet a cat.

He learned to make muffins, how to level a teaspoon of baking soda, and that the best part of baking is licking the remaining batter from the bowl. He learned how much patience it takes to wait for anything delicious to bake, and that time always passes more quickly with snuggles and tickles. 

He learned to plant seeds and bulbs. He learned when to pick a tomato and a pea, and he learned just how delicious food is when we grow it and make it ourselves.

He learned to hug trees. 

He learned to program an IV pump, to flush a line, to administer chemotherapy, to ask for a bolus, to sit very still for procedures, to breathe through pain. 

He learned to say, “I love you” when he meant it.

This list could be miles long. Caemon learned so much in his short life. He was so busy doing what he wanted to do, learning what he was ready to learn, that no, he didn’t have time for jumping and writing, but he did have time for compassion, for communicating, for nurturing, for connecting with other people (and machines).

Caemon didn’t need to learn to write. He could speak (very well), and that is all he needed to communicate. He didn’t need to jump; he could run around just fine when he wanted to. He didn’t need school because his curiosity kept him learning constantly, yes, even in his hospital bed. 

Of course it hurts that we have no child’s lunchbox in our home, no first-day-of-school picture to post, no teacher conferences or back to school nights and no “To Mommy” notes scrawled in an early writer’s hand. It’s impossibly painful and poignant that the art Caemon made in his three years and five months is all we’ll ever get from him, that his favorite books sit dusty on a shelf. I can take some comfort, however, in knowing what he could do, what he did do, and knowing how much of himself he left behind. 

My son never wrote his name, but he touched the hearts of thousands of people, reminded us to live, taught us to love more and fear less. How could I ask more of him when he gave so very much?

Caemon’s first day of preschool.

don’t call me caemon

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.

Croc snuggling with our special friend, Carol.