Kristin DeMarco Wagner


Entropy. Sheer entropy.

The idea that everything naturally wants to devolve into chaos and decay, and that the very best you can do is to slow the rate at which it devolves. Bodies. Households. Families. There are millions of threats to peace and stability and order, to predictability and consistency and comfort. The fight to maintain functionality is seen as exceptionally boring. The people who do the work of seeing and preventing and solving problems by employing routines and traditions and checklists are seen as less than. Anyone doing routine maintenance in the fight against entropy is denigrated for having done so. Garbage collectors. Nurses. Housewives. Maids. Servers. Shelf stockers. Bus drivers. Postal workers. Line cooks. Mechanics. Moms. Each of these roles require attention and putting your body and brain into the work to form a foundation for everything else.  The work of keeping the world from collapsing in on itself is so vital, so important. But doing that work is seen as beneath almost anyone and everyone who doesn’t have to do it.


My oldest was seven and a half when my youngest turned five. I estimated that each kid had had a bath every other day. My oldest had been alive around 2,725 days by that point, and he had most likely had 1,362 baths. Each bath took at least 15 minutes. Doing a bit of rounding I estimated I had supervised 20,430 minutes of bathtime, or 340.5 hours, or 14.1875 days. Cleaning away dirt and debris. Gathering up the bath toys. Washing his hair and getting him to do a coyote howl to put his head far enough up I could rinse shampoo bubbles down the back of his head, away from his eyes.

My youngest, by this time, had had about 912 baths, each lasting at least 15 minutes. That is approximately 13,687 minutes, or 228.125 hours, or 9.5 days.

The math isn’t perfect. There were times the kids bathed at the same time-when I had a toddler and preschooler who could fit in the tub together and didn’t mind. So that cut off some of the time spent. But there was the summer that my youngest was a toddler and screamingly terrified of the water, so to get him clean and acclimated to the tub I would struggle into a swimsuit and hold him on my lap and slowly pour water over his arms and back as he clung to me and began to loosen his grip when he really finally believed he was safe. That added time.


I haven’t accounted for cleaning out the rubber duckies that squirted water, making sure they weren’t producing mold in their damp dark hearts. Killing silverfish that love a wet tub, and calling pest control to get rid of them. Bleaching bath rugs. Bleaching towels. Scolding the kids for not drying their feet before walking in the carpeted hallway. Forgetting to scold them for not drying their feet and inwardly groaning when my husband would step in a wet patch and grumble about his wet socks and how it wasn’t good for the carpet. That added time.

There were the times when the steam of the bathtub made me overheat and come close to throwing up in the toilet next to the kids as I urged them as please finish up so we could be done so I could leave that sauna box and make sure everyone was clean and safe. That shaved a few minutes off. But there were also times where the guilt from having cut them off so abruptly before meant I let them stay in the tub playing with their toys until they got pruny. That added time.

Achieving the minimum level of cleanliness takes time. Removing the top layer of filth that can clog pores and matte hair and mask bug bites and obscure just which plant a kid may be allergic to is a routine task that is required for basic maintenance, and it is undone within twenty-four hours. Sometimes it is undone in twenty minutes. The work done is erased before anyone outside of the family can see. Hundreds and hundreds of hours of very good and uneventful maintenance work remains invisible. And that’s how the people who do that work consistently and unremarkably well become invisible.


To measure how much maintenance work I do, since I am always afraid I am going to fall short of perfect, I sometimes imagine what the chaos would look like if I really was doing nothing. I have always liked dusting more when there was a thick layer to wipe away in a cloth, a visible trail of how much fine debris had accumulated and how much my effort would improve things in a marked way. I can appreciate what I do when I can see or imagine the wreckage of what is not done.

When my oldest was seven and a half, and my youngest was five (and we were trying to keep their brains as busy as we could even if I couldn’t be mentally present to challenge them), we bought many Lego sets. We put them on birthday lists. We had 36 Lego sets, a box of Duplos and several off brand “building block” sets. The range of pieces per box went from 39 bricks to 1254. Each set got its own gallon-sized Ziploc bag to hold instructions and extra pieces as soon as a set was taken out of its box and built. When the set was taken down months later to make room for new sets on the shelf, all pieces were put into the correct bag. The bags had their own clear plastic tub. Bricks generally didn’t go astray because I didn’t have the energy to expend on worrying if there were choking hazards lying around. I didn’t have any margin of error for accidentally introducing more pain to myself by stepping on any. The Hero Factory sets were the only ones allowed to lose pieces as they were meant to be action figures and not decorative set pieces. The heroes would fly and smash together and save the day and occasionally lose a piece but remain functional. All this to say, it was well controlled. Probably too well controlled, but small missteps cost too much.

Because all the sets were neatly organized in one plastic tote, I one day idly sat down with it, thumbed through the plastic bags as if they were files, and wrote down the number of pieces each set contained to get a clearer picture of what we had. Added up we had-

Seven thousand,

seven hundred,



Lego bricks.

I liked to imagine them as a thick carpet several inches deep, or settled haphazardly like dust over books and shelves and windowsills-hard red yellow green white blue orange bits at jagged angles covering everything. Dunes of Legos, windswept up the sides of walls. Tidal waves of Legos rising and crashing over the kids’ RC cars and stuffed animals, swallowing them up. I imagined trying to find the one clear 1 x 6 piece we needed to complete a set lost in haystack of rigid rectangles. I imagined taking days to sort it all by color then swirling my hands through it because I liked how it looked. I imagined laying my back over them like a bed of nails to give myself a new distracting pain-a new Lego brand of acupuncture. My imagination let me realize that without my imposed order it would be chaos. I did something. No one else saw the deep snowfall of Legos in the playroom the way I did. No one knew that I was doing something by keeping every brick in place. 


I have to take care of my body. It requires specific food, specific meds, specific layers of clothing for warmth, specific shoes so I don’t jar my back, specific supplements taken at specific times, specific amounts of activity, specific amounts of rest. It requires the routine maintenance of regular doctors’ appointments and adherence to treatment plans. These things must be done carefully and continually so that problems do not swell and flood, cascading torrents of pain and confusion overwhelming my ability to save myself. I regularly dream about trying to save the children from drowning. It is a proxy for watching myself drown.


Non-compliant is the negatively charged word for patients who will not abide by their treatment plan. When doctors cannot force a patient to do the things they need to do to save their lives, they try to educate. But patients (some frustrated, unsympathetic, and often-wrong doctors complain) are stubborn, uninformed, lazy, irresponsible, contrarian.

Patients are human. Sometimes we cannot comply. Sometimes the advice a doctor gives is wrong and we will not comply. Sometimes we may want to bend the rigidity of routines that do nothing to bring happiness-the routines that only prevent more loss. Spending so much time and energy trying not to die, you often don’t have the time and energy to live. But the foundation of not-dying is too compelling to ignore, too important to deny.

I want to not-die for so many reasons, so I comply as well as I can. I am quietly compliant and so invisible again. My only rebellion is that I listen only to the doctors who also listen to me.


Doing the same things day in and day out to maintain order is stifling. It is suffocating. It is boring. It can consume everything else, leaving no room. It is so important, but without some infusion of playfulness or creativity or connection it can crush you. My resistance to the crush became mess, loose ends that wouldn’t hurt anyone. Undone laundry, cluttered tables, stacks of books on my nightstand. Shoes that stay confined to the welcome mat so that we don’t trip, but are jumbled on top of each other. Magnets and papers covering the fridge. It gave me some respite from having to be perfectly compliant and a careful caregiver. It gave me something visible to straighten so I could feel useful. I cultivated mess so that I could feel accomplishment at making it clean again. So that I had some visible proof that my hand changed something around me.

My brain and my heart could not handle only taking care of my corporeal being and the environmental structure that surrounds it. My brain, to relieve some of the boredom, calculated how many minutes and hours we spent in baths, how many Lego bricks were sorted and carefully stored. My heart hadn’t found a way out except small, messy, unfruitful rebellions.


I added a new note to the fridge and talked to the kids about it.

It said: “In this house we take care of everyone’s body, heart, and brain”

My heart and brain had sputtered and gasped, drowning in the minutia of routines to keep my body from decaying. I needed to remind myself that my body wasn’t the entirety of who I was.


How do you have a good life in the midst of necessary order?

The lines of a musical staff are rigid, the specific and particular notes stuck to their spaces, the bars contained, the time signature fixed. And yet there is a melody that can dance within those confines. A harmony can emerge when it is most needed. The tempo can shift and the volume increase or soften.

That is how.

But without the structure none of it would be possible at all.

Without structure it is a cascade of discordant notes competing for attention. Cacophony. Instruments flooding any available pockets of quiet and peace with noise and chaos. 


Boring is its own problems, but boring is better than a crisis.

Stability is better than a crisis.

You can build on stability.

Stability looks like carving pumpkins at Halloween, making sugar cookies at Christmas, dyeing eggs at Easter. It looks like going to my niece’s pool party for her birthday every July and watching the Daytona 500 at their uncle’s house each February. It looks like apple picking in the fall, soccer games on Sundays. It looks like watching a TV show before getting ready for bed and reading a book snuggled together before the kids go to sleep. It looks like the tradition of going to Panera after dentist appointments. It looks like birthday parties where they know they will see their families. It looks like staying after school each day to play at the park with the same friends for a half an hour. It looks like the same fifteen recipes that I know I can eat safely. It looks like pill bottles set on a particular counter, and when I take a pill I move the bottle to a different counter each morning so I don’t forget whether I’ve taken it. It looks like a family reunion for my side once every five years where we share a cabin with their grandparents and my brothers and sister-in-law.

I am the keeper of order, and the keeper of traditions. There is wiggle room for creativity within each set of routines, built in on purpose so that I feel secure but not stuck. So that the kids can feel calm and grounded but not tied to their chairs. We are getting this figured out, how to keep our world from deteriorating. We are winning the fight against entropy. We’re even mostly happy. We are able to maintain some semblance of peace, of keeping our heads above water.  

Kristin DeMarco Wagner is an essayist and disabled/neurodivergent/chronically ill mom from the Chicago suburbs. A high school English teacher in a former life before kids and illness, she writes fairly often about the intersection of caring for children and caring for ourselves – working with our own physical and emotional limitations and strengths. Essays with these themes have been published in The Rumpus and Full Grown People among other literary magazines, and she is polishing a memoir-in-essays manuscript along those same lines. She also writes, as regularly as illness and parenting and life will allow, at

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