the lengths we will go to

Last week I was sitting next to one of my marvelous colleagues, waiting for a meeting to begin. I asked her if she was worried about developing a migraine - she was eating something I thought was one of her triggers - and she sheepishly confessed that if she did wind up a migraine, that would be okay.  It's the only time I feel like I can drop everything and really take care of myself, she explained. Her family knows to leave her alone, and she retreats to her dark peaceful bedroom, relaxing in the quiet until it subsides.

I thought of her on Sunday, sitting on the couch with Beatrice cradled in my lap: a long, hot, four year old baby snuggling her face into the crook of my arm. She had a fever. She threw up multiple times the night before. Too miserable to read a story or watch a video, she just wanted me. She would occasionally turn her face up towards me, gaze at me for a long time with her serious dark-fringed blue eyes, then sigh and snuggle back into position. You're still there. Good.

I was giving her spoonfuls of water, as one does, so as not to upset her delicate stomach all over again with a big guzzle (which is what she felt desperate for). She wanted to drink. She wanted to eat. I had to keep telling her, over and over, that we had to wait. Memories of the previous night (and my rather thorough clean up efforts, living as I do with someone whose counts are suppressed by chemotherapy) motivated me to stay firm.

Eventually Tylenol kicked in and she began to feel better. She watched a Tinker Bell movie. I sat with her for some of it. I already knew more about Tink and her fairy pals than I care to confess. After it ended, she turned to me with those big soulful eyes and said, Mama. I like having a sick day.

I thought back over the misery of the past 18 hours.

You do?

Yes! You get to watch movies and snuggle.

That's true.

Mama, you like it too. I know that you love to take care of me. 

She held my gaze when she said that, and behind her smile that lingered a little too long I detcted gritted teeth. She said it with finality; the tone and expression said don't you DARE disagree Mama. Just smile along and nod. YOU LOVE IT. That is all.

It's possible that Stockholm Syndrome had set in, but really, I did love it. I first had to make peace with missing an African dance class I had helped to organize. That hurt. But there on the couch, sinking into the cushions, peeling Bea's sweaty arms off my belly every now and then, I felt a deep contentment. There's no way around it when your kid is really sick. Someone has to stop everything, downshift from the whirring multitasking pace, and focus on fetching water and being a piece of human furniture.

The next day she was feeling a lot better but given the recent fever I dutifully kept her home from school. We painted our nails. Hit another Tinker Bell flick. Worked on a bit of art. Tried eating toast and bananas. It was awesome.

She was so sad and mad to go to bed that night. She writhed in her sheets and kicked her feet over her head while I sang her songs. The writing was on the wall.

This is the worst time of day, she pouted. I hate going to sleep all by myself, and when I wake up, I know I will be all better and have to go to school with Didi and Gabriel.

The migraine was over. Back to regular life.

Prior to getting sick, and since, Beatrice has been ragged around the edges. Super clingy, quick to cry. She protests nearly every time I leave her side, which is often. It sometimes seems she would prefer I quit my job, stop making dinner and doing laundry, send her siblings to boarding school, hire a personal assistant to take over Mike's medical management, and dedicate myself 24/7 to being a snuggly and cheerful Beatrice Needs-Meeter.

Is it possible for a four year old to unconsciously will a fever into full bloom so she can enjoy some much-needed intensive caregiving? She's too little to know about self-care; for her, mama-care is where it's at. (I'm with her on that one).

Self-care is a weird phrase. It sounds so clinical, when what it means in practice is things like watching a favorite movie and painting your toes with your daughter. Like, good life things. I'm put off by the idea that we have to pencil in "self-care" the way we pencil in dentist cleanings, soccer games, and work meetings. Being urged to prioritize and plan for self-care is a sign that something about regular life is out of whack. The whole system is busted when we feel there isn't time to see a friend or take a long shower or go for a walk.

A quiet yet rebellious part of me objects. I do not like these terms! I do not want to schedule exercise on the family calendar in order to get any of it! I want time, space, and breathing room to be part of the deal; I don't want to have to get sick, or have one of my kids get sick, in order to enjoy these things.

Full disclosure: I use the phrase self-care all the time, at work and in the rest of my life. I use the concept freely. I encourage the students I counsel to take care of themselves with intention, to make sure they are sleeping and eating and going outside (not always easy for newly independent people). I tell my friends to be kind to themselves, to prioritize time to do the things they find restorative.

However.

I just hate the way mindfulness and self-care are thrown around in our popular culture, in magazine headlines and health newsletters. 5 minutes a day to a happier you! Meditate your way to success! Don't question the scramble, the pace, the consumption, the systemic injustices, the emphasis on achievement and status. Just utilize these handy tools - it only takes a few deep breaths a day! or a pedicure once a month! - and you can keep going full steam ahead. 

I think I mean I don't like self-care talk when it shines like a tool designed to keep us cogs in the capitalist machinery docile.

This fall the family schedule is daunting. There's soccer, piano, dance, choir, after school activities. There's three different pick-up plans for the three days I work. Mike has to go to New York every Wednesday for treatment and he usually isn't well enough to help with transport and child care on the other days. When my kids were younger I used to observe families balancing multiple afterschool activities and judge. Harshly. What a useless scramble. What about time outside? Weird and creative pursuits, a la magic potions concocted in the kitchen or a new style of paper boat to float in a puddle? What about boredom, dreaming, looking for a friend to play with?

But here we are. I feel confused about how it happened. Today we have two piano lessons, after school drama, and a dance class. Then it's parent night for Beatrice's class this evening. I don't like feeling as if I am careening from one thing to the next. But it seems to be what one does. My kids' peers operate this way. My friends operate this way. The slight difference is we are trying to make it work in the context of battling Mike's disease, so resources are stretched pretty thin. With so little time to breathe, I sometimes feel as if I am in a barrel headed for the falls. How do you work the brakes in this damn barrel, anyway?

I yearn for a life in which I feel sufficiently cared for just because. In which my barrel slides into a quiet eddy and I climb out and rest my feet in the cold rushing water at the river's edge and watch blue dragonflies dart and hover over wet dark fallen branches.

Sometimes I see everything through the cancer lens. Conflicts with the kids, separation anxiety, my ball-dropping habit, my many recent cooking fails. Like, if only Mike didn't have this damn disease, I'd have this family thing tied up, tight. The kids would be happier. The pain of life would be lessened. But I know that a lot of this stuff just is. Nevertheless, part of me wants to ensure my kids have a 'normal' life; I want to deny cancer the ability to take anything away from them. Not a single choir rehearsal, not a single ice cream cone. I really do want them to have it all; trying to make it so is an act of defiance.

I suspect if I were able to cultivate more acceptance and quiet my anxiety about protecting my kids from the limitations of having a vulnerable sick parent, I'd be able to look around sometimes and say no you can't do that. No we can't come. No, we need time to be at home together doing absolutely nothing at all. You kids might not master a musical instrument or a sport. You might not wind up with a stunning college resume. It's fine to not be the best. In fact, it's fine to be good enough.

And we are.

Now let's put our feet in that cool water, and look for minnows.