* I started this post two days ago. Now, two days later, I have gained only 8 more hours of very-interrupted, fitful sleep. We’re falling apart a little over here in leukemia land, and yet, we are very much holding it together.
** This blog post is made possible by a generous contribution from the Raviele Russell Foundation. We thank the foundation for their time, friendship, and kindness. We thank them for our sanity. Mostly, we thank them for entertaining our child and allowing us to lay in bed for a few hours, in peace.
First off, some photos from our week – again!
From top left to bottom right: Serious conversation with mom at clinic, this past Monday. Thanksgiving with Nona and Grampy. Chemo fun-time with Auntie Cardeents.
As usual, I have a hundred thoughts to write about and 1/100th the energy I need to make them coherent. This week has been . . . exhausting? I can’t even find an appropriately exhausting word to describe the exhaustion. I feel like a broken record – I am sure I have lamented this before.
Elsa is, overall, in the grand scheme of cancer kids, doing well. My journeys through the deep underbelly of cancer blogs and cancer discussion boards has left me with a healthy [unhealthy?] awareness that our own journey is comparably E-A-S-Y thus far. She’s running around, making loud noises, grinding play-doh into every fabric-covered surface in the house, relentlessly pulling the dog’s various parts, eating, drinking, smiling, living. On the other hand, it takes three hours to put her to bed at night, after which we are so emotionally drained that we, too, pass out. It has been weeks since we have had a peaceful evening, just Georgia and John, to decompress from the day. We dive into bed, minutes after she finally stops fighting her exhaustion, unable to speak to one another, frustrated, angry, tired, sore. Minutes later, it’s 4 AM and she’s awake! Screaming! “MOM! MOM! MOM!” Except that she’s not talking yet, so it is just screaming.
If I may, I would like some moments to complain. Whine, you might even say. Grumble and bellyache. Please ignore the following paragraph. It is boring and self-involved.
After her 4AM wake-up scream fest, she’s cranky most of the day. She refuses to sit in her stroller for even 11 seconds (or 1 second, really) thus making any sort of exercise impossible. I try to set her up with snacks, a dolly, a blankie . . . no luck. So now we can check “Exercise” off the list of things I can do to maintain my sanity. She refuses to walk anywhere thus making any kind of extended outdoor adventure impossible. She also refuses to be carried in any of the 6 sling/carriers that I have for her, so we can only adventure as far as my arms and back can stand to carry her 30 pound toddler heft. Most frustrating? She refuses to nap in her crib anymore. I can repeat our nap-time routine 15 times, and 15 times, she will wake up the moment I transfer her from my arms to the crib. Now we can check off “Alone Time” from the list of things I can do to maintain my sanity. Off to the car we march, and she is asleep by the time we get to the mailbox. Captive in the car, I sit for two hours in a variety of local parking lots while she sleeps, resenting every moment that I am not at home, stealing a moment or two to myself. Sometimes, she likes to shake things up a bit and refuses to stay asleep unless the car is in motion. On those days, I get to drive, drive, drive. Hours spent exploring the local backroads, stewing in my ever-increasing resentment and bitterness. Our days have been virtually shut down for the past two weeks, confining us to the house, my in-laws, and the occasional trip to the library which she *amazingly* still tolerates.
It’s been really hard to hash out what is cancer and what is our toddler’s difficult challenging personality. What is pain and discomfort and what is a nearly-two-year-old asserting her independence via tantrums? What is neuropathy and what is a refusal to walk on her own because it’s easier to be carried? What is pain and suffering during the night and what is a little girl who really just hates sleeping anywhere but her mother’s arms and has learned that screaming gets her what she wants? I hate to enter into those “Cancer stole from us . . .” conversations, but cancer has robbed me of any sense of confidence I had in my parenting ability. My child is a scary mystery now and I am helpless to make her feel better. We stumble through the day, hoping her behavior is just normal toddler shenanigans but always suspecting something more sinister.
We are exhausted and broken, but, like I said, we are acutely aware of our good fortune as well. We are home. She is not on a ventilator in an ICU somewhere. We are not preparing for a bone marrow transplant. We are in remission. She *just* has leukemia. It’s the *good* kind . . . It could be worse . . . It could be worse . . . I know. I know!
I still cling to our moments of sweetness throughout the day though. There are times when she grabs my face and rubs my cheeks, pushing her little nose into mine. I think there is a sweet little girl in there somewhere. Surely, there is a girl who doesn’t scream and whine and maliciously crush cheddar bunnies into the carpet at 4:30 in the morning.
If you’ve actually made your way to the end of this rambling nonsense, here is a sweet moment of silliness: [Please direct any questions about "Why would you ask your child to lick her mother's nose and eyeball?" to John. Also, she is covered in blackberries.]
