thing one was diagnosed with an autoimmune disorder almost 2 years ago now. We knew the diagnosis would come with big changes to his life, and this winter we really got to understand what it means to live with and care for someone with a chronic illness.
We were still somewhat prepared for it.
What we weren’t prepared for was going through very similar routine with Thing2. After several months of ER visits and tests and flu‘s, we now find ourselves between a number of diagnoses, including a possible tickborne illness.
Thing2 has found himself and completely unfamiliar territory. My superhero whose used to jumping over tall rock piles in a single bound it’s only found himself with barely enough energy to walk from chair to bedroom.
Except during the worst of the pain, however, he still my superhero. I still see his enigmatic little smile, and he still finds ways to experiment, even if it’s only with making movies with special on the iPad (full disclosure: I could not do it) or testing theories about how your atoms are not really touching your brother that he heard on Cosmos (science hurts sometimes).
I would donate an organ if I could make him better tomorrow, by doing so, but as Thing1 has Learned over last year, what doesn’t kill you doesn’t just make you stronger, it also makes you smarter.
The right word escaped me then but has found me tonight as I listen to each inflection of Thing1’s fevered breath, afraid to sleep in case he spikes again, cataloging the drugs and doses he’s on incase we need to head to the hospital for the umpteenth time this snow-inundated winter, and feeling completely frustrated at not being able to do the one thing every mother is supposed to be able to do for her children — make them better.
And, for the first time in weeks, mostly because I’m way beyond the “if i didn’t laugh I’d cry” stage of the winter and because I don’t have time to cry and can’t think to write or draw, I picked up a brush and started to paint, and the word found me.
Somehow we will dig out of this endless winter, but right now, I realized that the word I’d been looking for was “buried”, and it had nothing to do with the snow.
For some reason I can’t quite remember, I found an hour or two to myself on Christmas Eve of all days. Presents were wrapped, someone else was responsible for Christmas Eve dinner, the table was set, and the Sunday New York Times was sitting on the end table waiting to be read. it turned out, that that Sunday Times contained a little lump of coal in the form of an article about the advent of sensitivity readers at publishing houses. I shouldn’t be surprised that there are 1 million ways to offend potential readers or that publishers might want to keep one or two of those readers, but I was suddenly very grateful for all the classic works of literature that, having survived government censors, had the good sense to be written before sensitivity readers existed.
Then I thought about my own kids’ book (and future book ideas) and all the ways it might possibly offend people.
The pictures are black-and-white and red all over, so some people might get offended by the predominance of red or the fact that the starring role in the book is played by kid with really bad hair. Or some sensitivity reader might worry that I’m insinuating that mom is with bad hair can’t get their kids to clean their rooms.
But as I thought about the ending of my little book about a kid who has his own idea about the definition of a clean room, I realized the people with whom I’m really gonna be in dutch are the millions of moms who are also trying to get their kids to clean their rooms. OK, so maybe I’ll only be in dutch with the moms who still have kids under 12. And I can whittle down that number to the number of moms who read my blog who haven’t figured out the magic formula for getting their kids under the age of 12 to clean their room. So that’s like, five or ten moms at least.
I don’t want to scare you because the book does have a happy ending, if you’re the kid with the messy room, and I do want to go on record that I am not endorsing the non-cleaning of rooms. I do find myself in the controversial situation of being willing to support a flexible definition of the term “clean room“.
This last week, was winter break and, after ordering Thing2 to clean his room two days in a row before he was allowed to invite friends over for “get together’s“ (formerly known as “play-dates” which, out of sensitivity to our resident tween, has been dropped from the approved household lexicon), I realize I’ve been a bit insensitive to him on this sensitive and highly controversial subject.
Thing2, now getting better at making the room look clean (at least to the casual observer), will stuff a few things end of the bed where they were less likely to show and spend the rest of his energy putting away all the shards of paper from his last homemade light saber, organizing his props for his next special effects project, and finding a place for all the disassembled electronics he rescues from the trash.
When he’s done, the room still looks like hazardous waste site, but in all fairness, the madness is the result of a creative but methodical and investigative spirit. What looks like a shambles to me is for him a laboratory of life.
I’m a huge believer in encouraging the creative spark in everyone, especially in my offspring. That laboratory is why he comes to me at the end of the day to show me the special effects space movie he’s just made or the book he’s just “published”. So even though even a domestic anti-goddesses such as myself sometimes has to draw a line between the dirty socks on the floor to establish benchmarks for distinguishing the a laboratory from a trashcan with a bunkbed in it, the laboratory is part of what makes Thing2 grow.
It’s also why, at the end of a book about a little boy who has his own idea about how to clean room, I decided to let that idea win out.
At the beginning of this year, Thing1’s autoimmune disorder hospitalized him with an intense flare up and, not to be left out of the fun, promptly Thing2 contracted Influenza-A that, along with a lymph node inflammation painful enough to prompt two separate diagnoses of appendicitis earned him an overnight ticket to the pediatric ward. As a result, almost every week of our 2018 calendar has been dotted with nights in the ER, overnights at the hospital and follow-ups at various doctor’s offices. Last Thursday marked my first day off in weeks that didn’t include a rush to the ER or a four hour round trip drive across the state to a specialist, and I didn’t know what to make of the unexpected breathing room.
For weeks, the voices in my head that run an internal dialogue about art and literature and school shootings and the homeless population and, you name it have been replaced with instructions. Log when you last gave Tylenol or ibuprofen. Call for the new prescriptions. Did T1 have 32 ounces of water or 16? When did T2 poop? Check his weight. Call the insurance company. Call the doctor. Call the insurance company. I wasn’t numb, but I was a robot. Calculating but not thinking, especially if it meant engaging in worry which is all too natural for me (it could be an Olympic sport).
The robot didn’t have much extra processing power for art or writing, and February was burning away without any pictures to show for it. Even a conversation with a fellow artist about drawing in the down times at waiting rooms didn’t get my pencil or brush moving.
There was breathing room, but for some reason, I was afraid to rake that first breath.
A few nights ago, I decided out the iPad to work on a page for Dweezil’s To-Dos, a book about a little boy with too many projects (don’t ask how I get my inspiration).
Inking and coloring over the scanned drawings is methodical. Robotic. It’s not particularly creative a lot of the time. It’s basically just drawing lines – filling in the space between points.
It’s not creative, but it is meditative.
In the meditation, however, the robot slowed down. I inked and colored page 6 six different ways, and the machine started to power down. My eyelids felt heavy, and the iPad fell from my hand. The thud of the Otterbox on the floor jolted me awake again, and, rebooting, I took in a gulp of air and opened a file to start page 7.