Thing1 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.
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.
The picture on the 27” screen had just switched to views of the Oregon area as Kindergarten Cop went from a loud, violent sequence to a more lighthearted part of the movie. The room was dark and shots of green hills and blue sky made the console TV look like a window to better places in the world than this house where I knew I should not be. I was thinking about grabbing the purse I had just bought at the Indian artifacts store in the mall and leaving when the front door banged open.
Afternoon sun poured into the hallway next to the front room making the mustard and gold shag carpet look clean for just a moment before two stark shadows darkened it purple. The shadows moved barely 2 steps before morphing into two very young men pointing guns at the seven people in the room. To this day, I don’t know the types, but I can remember black cylinders pointed at us as we were told to give them our valuables.
I tried not to look at one of the thieves as I handed him my purse strap. He took a wallet from the man sitting next to me next. Another girl at the gathering asked if she could get something out of her purse first, and, I knew we were all going to die.
Only an hour before this nightmare began, she had pulled from it a handgun to boast of the recent gift from a boyfriend. I knew I should’ve walked out of the party immediately. Now I stared down at the beer-stained shag carpet, realizing it might be the last thing I saw because i’d lacked the fortitude to do the right thing at the right time.
The boys/men unwittingly spared all of us shouting “No” and grabbed her bag. It took less than two minutes for them to collect our valuables, and then they told us to lie down on the floor. There had been other robberies in the area in the last few weeks that had ended with fatalities, and I wondered if it would be better to be shot in the head and die instantly or in the back and be paralyzed.
The boys apparently having chosen their target because they knew the house’s tenant was also engaged in criminal activity (the full extent of which I later discovered) and would not be calling the police, left without firing a shot.
Two hours later locksmith had made a new key for our cars. Knowing our assailants had my license and apartment keys, I drove to a friends house, and hid in their basement TV room for a month. For years I told no one I loved what had happened since I knew I was to blame for having stayed in the wrong place with the wrong people.
That was over 25 years ago, but those two minutes changed the trajectory of my life. They changed forever the way I dealt with people, with crowds, even with jobs. I stopped trusting anyone, especially myself. For years, every decision was made out of fear that sometimes metastasized into hate for the world. The Big Guy and the arrival of Thing moved me in a more positive direction, but I lost a lot of years and productivity to fear and hate.
I think about that impact every time word of another school or church shooting comes across the news. The people on the receiving end of this horrific violence have all been in the right place. They’ve been at school opening their minds or in their places of worship opening their hearts when some hate-filled person decides to take revenge on the world around him. And, as we have seen on the news, everyone in the presence of that violence is touched by it. It doesn’t matter if the bullets actually hit them, they will be scarred by them.
Some survivors, such as Emily Gonzalez, an eloquent and passionate advocate for the right of her contemporaries to go to school in peace, take of their post-ordeal trajectories in ways that become beacons of hope. My guess, however, is that even those with the strength to channel their pain into something productive will carry the wounds on their psyches for the rest of their lives.
Some scars may fade into tiny lines, blending in with those normal lines we all acquire. The psychic wounds inflicted on the children in this country may be increasingly common, but they are not normal. There are kids in war-torn and impoverished parts of the world who are acquiring far worse and more frequent wounds to body and mind, but that should not be the benchmark.
As I write, I’m watching 11-year-old Thing2 take apart an electronic toy to build a lightsaber. He’s at the beginning of his Age of Discovery. I know this is when his spark will be fanned into a flame. I also know he will acquire a few mental and physical scars over the next few years. That’s part of growing up. But, every day now I think about all the ways to protect Thing1 and Thing2 from the scars that should not be part of any childhood.
I know I’m in good company as more than one conversation with other parents over the last few years has evinced a common fear that any morning school drop off could be the last. We laughed nervously at what statistics tell us is our paranoia. Then a day after Parkland we heard news of a narrowly averted but similar shooting at a school two towns away. The conversations have since turned in earnest to school security, regulating certain guns and would-be owners, and even leaving the schools for homeschooling.
As I’ve entertained homeschooling for T2 and online college for T2 I realized my experience is still exercising its impact, trying to straitjacket their potential. That the fear isn’t irrational doesn’t make it less damaging to their futures, but I genuinely don’t know how to keep them from experiencing that fear while our country seems willing to normalize schools, churches, malls and theaters as war zones.
My personal feeling is that this issue won’t be resolved with a single magic pill. I don’t believe better school security or improved mental health support or better background checks alone will fix this, I think the answer will involve a combination of many solutions, but none of them will happen until we decide that all our children’s futures are worth working together.
Back in April, just about the time I was trying to untie my creativity from a paralysis of over-analysis and get the last few pages of The Truth about Trolls laid out, Thing2 was exploring his and putting my resolve not to limit it to the test.
His spring time creative effort led to a rock pile in the middle of his room, the fruits of a “quarry” he and a couple friends had started near the kids’ Lord of the Flies training ground in the woods behind our house.
That was three weeks ago. The rock pile is still there.
He’s cleaned his room. I have cleaned his room-a bit. Laundry has been done. Baths have been had. But that rock pile is still there.
At first thing to wanted to hang onto it. Then he was afraid he wouldn’t clean it up the right way.
It was a story writing itself (Élly has been very understanding, as long as her pages keep developing).
Thing2, aware that the rock pile and the absurdities of our undeclared battle are serving as inspiration, is more determined than ever that it should stay. To his credit, however, he has moved it out of the center of the room so the rest of us can get from point a to point B without breaking or next.
I’ve decided to exercise my mom authority and remove the “inspiration” as soon as he goes to camp or I finish his story, whichever comes first.
He’ll be a man soon, and, again – through no fault of his own – he may find it more difficult to get coverage or possibly even job, since he will have to evaluate the laws in each state and not every employer will want to cover hires in his situation. It will Even so, he’s lucky compared to the millions of Americans who will lose insurance outright. He’s still on our insurance plan, and we’ll keep him there as long as the law allows.
Jimmy Kimmel hinted at some of this the other night in his emotional monologue. He briefly touched on the fact that, prior to the ACA, a child like his would have reached his lifetime insurance cap before he left the NICU. If that child had appendicitis, or a broken bone, or cancer, that cap would have left many parents bankrupt at best or burying their child at worst — even if they had insurance.
I have thought a lot about those other parents in the months since our son was diagnosed. When we get our meds, I silently thank our company for making it possible and then shake my head that anyone in a country as rich as ours might have to watch their child suffer or even die. I shake it when I wonder how many people die prematurely because they don’t have access to the same healthcare we do, and I wonder how we benefit as a society from treating children and poor people like disposable objects.
I call my representatives. I donate. And I shake my head. But today I’m done shaking my head. I’ve thought about moving our family back to a country with stronger healthcare, but I’d still be shaking my head at the drugstore, wondering how people back home were managing without access.
So now I’m still calling my representatives and donating, but I’m also looking for new ways to show solidarity with my son and with all the other people who are being pushed out in the cold. Because, as Jimmy Kimmel so beautifully stated, “We need to take care of each other.”