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.

Croc snuggling with our special friend, Carol.

Advertisements

15 thoughts on “don’t call me caemon

  1. strawberry

    Couldn’t read and not respond. How heartbreaking. Croc will transform back into Caemon once again this year…we’re all just waiting and hoping for that time.

    Reply
  2. inherimagephoto

    I am in constant awe of your ability to put words onto this journey. The courage it must take to verbalize your experiences is just so massive. Thank you for sharing so much with all of us. As always, our hearts are holding each of yours today and every day xo

    Reply
  3. Jen

    I too am in awe of your strength during this entire process and your ability to not only document, but to process and analyze this unfair world. I think Croc is a beautiful symbol of this time and soon, I hope, he will shed his thick protective skin and be your wonderful boy once more. Hugs.

    Reply
  4. Crystal

    How heart wrenching! I am glad that you were able to find a name that he felt more comfortable using. I know that you are such strong mommas giving him so much love right now, even when he doesn’t feel like himself. So blessed is he to have you. Keep giving him words to use, it will help him process it. Much love and light to you all.

    Reply
  5. Helen

    Croc is a fine name and it suits him well. He is such a stong boy, and so smart and wise beyond his 3 years. It seems like a good way to protect himself…Caemon is there, he will always be Caemon, but needs to be sheilded and protected from this too rough journey. Croc will see him through and he will emerge once again, when he is ready. What an amazing little boy! Truly amazing! Go little Croc…..You are doing this so well brave boy!!!

    Reply
  6. crystal

    Sweet Croc is so lucky to have such amazing understanding compassionate parents to help him through this tremendous journey. I am in constant awe of your strength and wisedom through this whole process. My heart is filled with love for all of you!

    Reply
  7. Kathy H

    So insightful, I am in awe too, and sad, and admiring, and hopeful all at once.

    This also makes me think of my grandson, Devin. Despite his disabilities, he was a happy guy until his mom kidnaped him and broke his world apart. Now that is over, but he can only have one parent at a time, and that caused endless behavioral issues.

    Around that time he made up an imaginary friend, Mario. We thought he was an IF, but we eventually realized he was an alter ego who did bad things. He was the one who should be blamed, and the one who made Devin do bad things. Devin sometimes seems not to be Devin, non-responsive, mostly when he’s tired.

    At those times, when I say Devin, he says, “I not Devin. Devin not here.” Devin being the one whose dinner is sitting in front of him, or is supposed to go to bed, there is then some other boy there without those things to be done. He has laid Mario to rest, banished him, so I don’t know who this kid is other than not Devin.

    Devin also has a dog named Homeboy that he got when he was gone. He asked me if I would take care of Homeboy and I said I thought he lived in California, not realizing he was an imaginary dog. Homeboy, says Devin, needs to be kept in line, told not to bark, told to stay out of places he shouldn’t go. He doesn’ really ask us to love Homeboy, only to control him.

    I don’t think Devin’s identity shifts are like Caemon’s, which you have figured out so well. Just was struck by the story of your child disowning his name too. It’s interesting how these little ones figure out the power of a name, a word, and make decisions to change their reality by accepting or not accepting a name, at will, or by adopting an alternate.

    I very much like Croc. Croc is perfect. A boy named Croc should be entitled to feel snappish. And at some point to shed his crocodile skin.

    Have you ever read the book “The Princess and Curdie” by George MacDonald? I think it would speak to you. There’s a section in the chapter “Curdie’s Mission” where the magical (goddessy) grandmother burns the skin off the boys hands to bring his “real hands” close to the surface … and the pain is very very great, but she helps him bear it by feeling it too, the way you are both helping Caemon. The pain is all for a very good reason. It turns him into the boy he needs to be. it is a very cool metaphor and story of transformation. (And it’s online.)
    http://www.PageByPageBooks.com/George_MacDonald/The_Princess_and_Curdie/The_Mountain_p1.html

    Your writing of Caemon’s transformation reminded me of this story tonight. It was one of my favorites when I was a child. (It is a sequel, but it stands alone.)

    Love and light his way and yours.

    Reply
  8. Jeanne Marie

    Oh, once again how amazed I am at your family’s process, and I thank you from the bottom of my heart for sharing your journey.

    This child of yours is AWESOME and so are both of you Timaree and Jodi as you hold space for this dear one as he traverses the most darkest human existence imaginable.

    It is an honor to be privy to your sacred journey, and I am sending loving strength and graceful ease to the three of you from the mighty redwoods.

    As the Light returns with Spring, so will sweet Caemon, and in the meantime, please give my Brightest Blessings to the Amazing Powerful Warrior Croc.

    In Love and Light,

    Jeanne Marie

    Reply
  9. E from Pot o' Gold

    This post made me cry for you and your little boy with the wisdom beyond his years. I agree with the person above that Croc is a good name, for crocodiles can be unpredictable and snappy, and fierce, and have a thick skin to get them through tough situations. It really is so perfect. Upon reading up more on them, they also have a very slow metabolism so can go for long periods of time without food, and have a palatal flap at the back of the mouth that prevents the entry of water! They are also related to dinosaurs, which, I’m not sure about Caemon, but most three-year-old boys I know love.

    When my oldest son was in his first year of preschool (age 3), I remember there was a little girl in his class who was not very comfortable being in preschool. She was shy and reserved, and her mom was around the classroom a lot, to make her feel comfortable. She, like Caemon, asked to be called different names. Sometimes it was one certain name, but it varied also. I wonder if it’s a common theme among 3-year-olds to create a new name/persona for themselves in precarious situations. I’m not saying the level of difficulty that little girl was experiencing is anything like what Caemon is going through, but your story brought her to mind.

    Reply
  10. Leslie

    Please give the croc-man a high five for me. He is such an amazing boy. I do agree with others …your ability to put this journey into words is a blessing for so many people. Hopefully one day when you look at this time in your lives and Caemon, is asking about his journey, you will have this blog to share with him. Or by then…this story will be on the best seller list and every parent to comes after you will read this and know there is hope as long as you climb the mountains before you. Sending love and hugs to you both and your croc-man. 🙂

    Reply
  11. Edmond Wolf Ornelas

    Stay strong for thats what hes doing.All his energy is going into his fight.And he will draw from you all.Croc-I like that.

    Reply

Thank you for your replies. We appreciate every comment.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s