special needs parenting

New (ab)Normal

I probably shouldn’t blog when I’m pissed. I definitely shouldn’t blog with a large alcoholic drink at my side. I’m about to do both. Sorry, but I couldn’t edit my thoughts enough to limit to tweets. I am appalled and disgusted by how many people don’t want to understand just how deep a pile of shit this country is in right now, how deep it’s been since November 8, 2016. No, I’m not talking about 45 supporters, I’m talking democrats, those who consider themselves part of the resistance. Yes, they’re upset. Yes, they’re marching, they’re calling their representatives, they’re gasping at the thought of a hardline rightwing (and likely unqualified, given the other picks from this administration) Republican taking Justice Kennedy’s spot on the Supreme Court…and then they’re saying, well, midterm elections are only four months away. Well, at least we’re in a blue state.

Well, wake up, buttercup, all bets are off. Everyone knows by now this administration chose to separate and cage babies taken from their parents, who came to our borders because they were desperate, seeking refugee status in a nation that was, until recently, a reasonable shot at a reasonably safe life. Now we’re hearing about children as young as 3 years old in immigration court without their parents. 3. In court. Because if they deserve to live here, they’ll pull themselves up by their diaper tabs and orate like Atticus Finch? Stop for a second and think about how completely insane and evil that is. Now tell me how certain you are that living in a blue state, in a country that isn’t red, but black and blue, will keep you safe. If this government can decide to deny due process to refugees, they can decide to deny it to you.

Years ago I entered the world of being a medical needs parent. Not when kiddo was born, but a few years later. That’s when I learned, really learned, the idea of a new normal. Because at first, it’s natural, understandable, and probably healthy, to wait for and expect things to go back to normal. Surprise! That day doesn’t come. And you learn about the concept of new normal. And you think you will adjust. And then another medication fails, and another diagnosis is added, and then another diagnosis is questioned, expectations are adjusted, lather, rinse, repeat, ad infinitum. And then you reach a point where you understand new normal means constantly shifting. Along the way, you understand a lot of the old normal still applies. You still have to do laundry, make dinner, grocery shop, clean the toilet. Now you add more time in the pharmacy than you dreamed possible. Making sure all electronics are charged and ready to go at a moment’s notice becomes second nature. When things are bad, you make sure there are frozen dinners in the fridge in case of emergency, make sure there are always enough clean clothes in case that potential trip to the hospital has to happen right. now. You learn to be patient. You learn to wait-and-see without turning away. You learn how to argue, plead your case, and spend eleventy billion hours on the phone fighting with the health insurance company. Politely. And you learn polite doesn’t mean saying thank you and accepting when needed coverage is denied. You still get to laugh, enjoy good moments as they come along, treasure the people and friendships you make in this new abnormal world, and appreciate those friends from your old world who understand they cannot understand your new normal-abnormal, and hang in there anyway despite canceled plans because of illness, side effects, hospitalizations.

You know what you don’t get to do? Pretend that all this new abnormal is all going to disappear. Not only disappear, but leave no permanent scars on all involved. You don’t get to pretend that a momentary meltdown equals problem solved, or now you can ignore all the unpleasantness for the next month, or week. You don’t get to pretend, regardless of what gets worse or what gets better, that all involved aren’t irrevocably changed, shaped by these experiences, permanently on guard. You don’t get to pretend because this time it isn’t your kid hooked up to a gazillion tubes that the other kid who is there is purely theoretical. That is someone’s child. Maybe someone you know and care about, maybe not, but you know how easily that could be your child. As easily as the little one in a cage, in a strange country, climbing on a table in front of a judge when they’re too young to understand what a judge is, that child could be your child, whether you want to admit it or not.

America is sick. This is a chronic illness, that may or may not be fatal. We don’t get to pretend this illness isn’t insidious and progressive. Not even if neither you or none of those you care about have pre-existing conditions, or brown skin, or faith that isn’t Christian, or a uterus. None of us. It doesn’t matter if you’re appalled or offended. This is where we are, and we can’t possibly slow this descent into rotten banana republic if we’re still pretending the banana is just a little soft.

People are Stupid. Love, Mom

Rodin at The Met

Every home, every family unit, has their own rules–what’s out of bounds to say or do, particularly when there are children in that unit. For us, the absolute no-go was stupid. We never used the word to or about our kids, nope, not even kidding around, and there was a no-tolerance policy regarding them using the word about themselves, each other, or anyone else.

You won’t be surprised to learn that in our home, cursing (English, Spanish, or sorry to say, Spanglish) was not automatically against the rules. Yes, we wanted them to understand some words (ie, curse words) were offensive to some people, and wholly inappropriate in some settings, but we never pretended shock or offense on our own behalf. Everyone’s got their own things, right? We were also ok with movies or video games that had some cursing/sexy scenes (no, I’m not talking about when they were toddlers here), but graphic violence was out. I don’t know if he remembers, but at the age of six my oldest, already reasonably well versed in museums and the nude art to be found on display, was traumatized when he was at a friend’s house and they had a sculpture from this biblical scene:

Judith with the Head of Holofernes, ca. 1530, Cranach

So, we tried to teach the kids that words are powerful and important, to be explored yet respected, but violence and harm to others was never, ever ok. For whatever reason, the idea that certain words were not to be used in certain settings, or in front of certain people, was more easily learned for the English curses than the Spanish ones. I may have told the following story before, if so and you’ve read it, sorry, I’ve been running Mrs Fringe a long time.

When Art Child was five, we experienced her first hospitalization, and after approximately 8,000,000 days in the PICU, she was doing much better and the team was deciding whether she could be discharged or sent to a step-down room. Her main nurse argued with the resident on the unit not to remove her IV yet in case bloodwork was needed for the decision (if you’re unfamiliar with this stuff, if the IV is in place they don’t have to do another “stick”, they can draw blood right from it), the resident insisted she remove the IV. Needless to say after it was removed the team said one last blood draw was required. I was pissed, the nurse was pissed. The resident said she’d do the draw herself so we didn’t have to wait for the phlebotomy team, and the girl was furious. She was a passionate kiddo to begin with, very verbal, and so she cursed the resident. Resident chuckled, “it’s ok, you can call me a dodo head, I’ve been called worse.” Nice, right? She was trying to atone, but clearly confused by the fact that the (Latina) nurse and I weren’t chuckling, we were downright cracking up. Because the girl hadn’t called her a dodo head, she called her a toto head (see the earlier apology for my home’s Spanish/English mixing). Toto is Spanish slang for–so as not to offend anyone’s delicate sensibilities–girly bits.

She didn’t, however, call her stupid.

But, well, here we are, living in a time where misogyny, racial slurs and racist ideas/ideals are not only considered acceptable by the White House, but these ignorant slurs and ideas are being used to create racist policies. So no, the fact that our so-called President used the term shithole neither surprises nor offends me; but that it was used in reference to large swaths of the world, millions and millions of people because they have brown or black skin, offends me greatly. He knows what he meant, his supporters know what he meant. That shit isn’t a dog whistle it’s a shrieking tornado alarm, heard across the world. This isn’t cursing, this is verbal violence.

His millions of supporters? And if you’re one who hasn’t jumped on the bandwagon to use slurs yourself, but are remaining silent, shrugging it off, you’re one of them–are stupid. Not merely stupid for spouting, believing, and/or accepting ignorant nonsense, but stupid because odds are you’re next. He didn’t say, “why can’t we have more immigrants from China, from Argentina, from Italy, from Israel, Japan, from Ireland, from Poland?” No. He said, “why can’t we have more immigrants from Norway?” I haven’t met too many people from Norway and I’ve never been. The few I have met were only here temporarily for work or on vacation. I’m sure they’re a lovely people across the board, god knows I’d love their health care and if I had their social safety net I wouldn’t want to emigrate anywhere else, either. Norway. Whiter than white. Think about that, and think about who and how many ethnic groups are not part of that Aryan wet dream. It doesn’t matter who you voted for, if you’re American, odds are you/your ancestors are not all part of that purity test. I’ve been saying this for over two years now; it will not stop on it’s own. Ignorance feeds ignorance, and hatred feeds hatred. Once you say it’s ok to slander, take away rights, human dignity, to hate one group, it’s going to be ok to strip rights from the next group, and the next. And if you’re a woman, well, it doesn’t matter what your ethnic background is, if this continues unchecked and the GOP doesn’t find an actual ethics compass we’re fucked regardless.

For most of us, those of us born without millions of dollars at our disposal and/or the protection of aristocracy (real or implied) life is hard, and we face hardships that cannot be avoided. Some find their homes and communities lost to hurricanes or earthquakes, their life savings and opportunities stolen by corrupt officials, their loved ones and countries torn apart by wars, the victims of hundreds of years of systemic oppression; or some find themselves the victims of smaller, personal yet still devastating effects of catastrophic illness for themselves, or their children fighting incurable diseases, or an industry gone belly up so they can’t find a job that allows them to support themselves or their families, or the victims of random, violent crimes. These are the suck of life, things that are generally out of our control, yet we have the responsibilities inherent in figuring out how to make it through, or how to make it easier for our loved ones to make it through. But this? The position America is in now? This was in our control, and to some degree, it still is. This was a choice. A choice to make it harder, dangerous, impossible for millions and millions of human beings, a choice that purposefully ignored and distorted this concept of “other.”

So yeah, people aren’t just hateful, or racist, or toto heads. People are stupid.

Zero to Hero: Or Not

I know, I know, I haven’t been around. First I was writing, which felt shockingly excellent. Then I got sick, the flu maybe, which sucked. Naturally after I got sick, Art Child got very sick, and the battery for my camera has died, which means no new photos, and before I can blink, weeks have gone by without even considering a post, and a whopping dose of the blues, which means you didn’t want to hear from me anyway. Trust me.

The other day I was web surfing, and came upon what looks to be a reputable writer’s conference that will be here in the city this summer. Sure I haven’t opened the Mess-In-Progress in weeks, I’m not quite sure how I’ll work out the money or the logistics but ooh! I’m considering it. Maybe it will be motivating. Inspiring. Humbling. Humiliating. Yeah, maybe I’ll put that thought to the side for now.

Why am I blogging today? I’m not sure. Maybe because I feel like howling at the universe, but apartment life means no howling allowed. This is not a mom blog, or a special needs parenting blog. I do talk about my kids a fair amount because they’re a huge part of my life, but as I’ve said many times, Mrs Fringe is my spot to be me–all of me; the good, the bad, and the wacky.

I know Jimmy Kimmel did a beautiful job talking about all of this the other day. Heartfelt, honest, a perfect blend of hope and honesty, and I truly thank him for using his platform to talk about families who don’t have millions tuning in to their words, have millions cheering them on and praying for them. Even I teared up as I watched. He had a layer I don’t have anymore, that newness, that shock of how-did-I-get-here?

In parenting, there are moments that make your heart stop. I like to think I’m pretty good in moments of crisis, it’s afterwards, when you have time to think and breathe, when I’ll feel it most. But yeah, there are those moments where no matter that part of your brain is telling you to move, to speak, to take action, to take a breath…the lobe that’s in control in that one moment is frozen. I don’t know about anyone else, but for me, it hasn’t always been a huge crisis that prompts this, it’s the neat and perfect dovetailing of implications, suddenly unavoidable.

“Mom, the dark’s been darker than usual.” My heart, my brain, my fucking everything stopped when I heard that. Of course I needed to hear it, I need to know this, but I don’t want to. For the past several months, we’ve been seeing more specialists and adding meds to deal with the issue that’s come up with Art Child’s eyes. I can and will do everything possible to preserve her vision. We’ve been doing everything possible, knowing the odds are ugly, to say the least. And then I heard that statement. And the next day she came home with a different edition of a book she’s been reading because “the letters are bigger.”

And then I went online and read about the latest round of “How the GOP is trying to kill the citizens of America and torture the most vulnerable.” Excellent. Even better, the individual statements of Reps and 45 supporters saying things like people who live “good lives” and “do things the right way” should pay less than those with pre-existing conditions. As another med-needs-mom friend of mine put it, yeah, if only our fetuses hadn’t been drinking and whoring while in the womb, they wouldn’t have those pre-existing conditions. If you don’t have experience with this stuff, let me say sometimes I think it’s a freaking miracle that the majority of babies are born healthy and neuro-typical, because yes, there are that many things that can and too often do go wrong. Another pro-tip for you, everything is genetic. Everything. And most of us will, at some point, develop something considered a pre-existing condition, because it’s coded into our genes. Or we’ll have an accident that will have lasting repercussions. Or old age.

So on one side we’ve got the people who are totally cool with anyone with treatable health issues dying because they can’t afford health care. On the other side (and sometimes, oddly enough, there’s crossover) there are the people who know they and their family were really lucky with the genetic jackpot, and they say things like, “I don’t know how you do it. You’re a hero. Your child is a hero.” Now, I get the whole hero thing when you’re trying to explain to a very small child who’s ill. “You’re a superhero! You’re going to kick cancer’s butt! Slaying cystic fibrosis! Show those seizures who’s boss!” And I know there are some medical needs parents who find it helpful to think of their children (maybe even themselves, but I haven’t heard that regularly) as heroic in the fight against *insert cause(s) here*. Or they believe they/their children were chosen. I’m too cynical for this, and frankly, it neither makes me feel better nor gives me strength to make the next phone call, agree to the next med that includes “may cause death” in the list of side effects.

I’m a regular old gal. Really. If you walked past me on the street, well, you’d walk past. Normal. Regular. Average. You might notice Art Child because she’s fabulous and beautiful, but that might be my bias talking. You’d probably walk past her too. And my boys. Man boys, who do indeed have ten extra levels of strength, calm, and compassion because they grew up in a house with medical needs. But you’d walk past them. And that’s all okay. I love a good cape, and so does the girl, but I feel no need to slap on a mask and gadget belt. I just don’t want to be a villain, either, for wanting the best possible chance for the best possible outcome for my child.

One of Those Days

Byron and Ramiro, by John Sonsini, 2008

Yesterday was just another one of those days. You know the ones. Where you sit in kiddo’s specialologist’s office and they’re telling you news you don’t want to hear and their voice gets all tinny and small and you feel all tinny and small but part of your brain Must Keep Up Appearances so it engages your mouth and you try to sound like a Reasonable Adult Human Being by asking the right questions and taking notes as they tell you about two other specialologists that must now be added to The List of necessary ologists for said kiddo even though their words feel like a spray of pellets shooting holes in your tin self. Yeah, one of those days.

I haven’t actually read any news articles or watched any clips since leaving for the doctor yesterday. This morning I scanned the headlines, and I didn’t miss much. Just another day with this administration, apparently gearing up to declare war on Iran, Mexico, China, and Australia (?!). And, needless to say, continuing the war on the American People, specifically Democrats, women, people of color, Muslims, the wrong types of Christians, children, those who live in poverty, unions and union members, and anyone who mistakenly thinks Holocaust Remembrance Day and Black History Month aren’t about our Fearless Tweeter. Did I miss anyone? I’m sure I did.

The other day I blogged about us, who “us” is, and the need to stop pretending that the supporters of our administration and these new policies aren’t part of us. Indulge me today, while I talk about the GOP for the same reasons, just for a second. They aren’t going to save me, you, or anyone other than their own hides and bank accounts. Reasonable Republicans. I believe that used to be a thing, much as I might have disagreed with them. Now they don’t exist, not those in office, anyway. Sure, a few make some noises here and there, statements mumbling disagreement, but ultimately, they’re staying right in line with our everything old is new again White Supremacist sanctioned policies. Noises and mumbles don’t amount to more than a fart in a breeze when two of the horrific Cabinet picks were forced through despite the Democratic Senators’ boycott. When there’s any one of them willing to support that horrific choice for Secretary of Education. Thinkofthechildren my eye. When they ignore shady ties to Russia to clear Tillerson. When they support a well documented racist for Attorney General. When they quietly allow the firing of an acting Attorney General for putting the People and the Constitution above the administration. When they don’t say a word about the many active conflicts of interest. When suddenly Putin is someone to be admired, a role model. When legal and peaceful dissent and freedom of the press are overtly threatened.

What’s already occurred and occurring is horrific. I don’t have to read every word of every article every day to know this. But I don’t get to ignore what’s going on in the country and world around me. We may want to pretend we can just keep our heads down and it won’t effect us, but it does and will, in ways large and small. Like imported goods being taxed so high we can’t afford fresh fruits and vegetables. Like losing healthcare. Like losing doctors to bans and deportations. Like losing research scientists for the same reasons. Like losing public schools. Like losing special education rights completely. Like more job losses because of hiring freezes, tech companies going to friendlier countries. Like losing the right to practice whatever religion you choose. Or not. Like losing the right to vote because of increased gerrymandering. Like losing the right to choose, including situations of rape, the mother’s life at risk, and non-viable pregnancies. Like losing the gains made in legalizing medical marijuana. Like losing LGBTQ rights. Like losing all of our damned Allies in the world we share because they’ve been insulted and dismissed. These are just a few of the very real, potential losses for all of us, without even looking at the more dramatic and yet suddenly also possible scenarios. The only question we have now is will this shitshow result in disaster or complete annihilation.

So, stop. Stop waiting for these imaginary ethical Republican senators and congresspeople to step up. I used to believe the next specialologist would have The Answer, maybe even The Solution, to my girl’s ever-increasing medical needs, but it became necessary to face reality and stop getting my hopes too high. Still necessary to treat each issue as it arises, even necessary to hold a bit of hope in my back pocket, but for the sake of sanity and reasonable functioning, blind faith that everything will be ok and will go back to “normal” shortly is foolish. As foolish as expecting the GOP to step up, or thinking our country hasn’t been fundamentally, irrevocably damaged.

Do the Right–Wrong!

Because what else would have been the perfect gift for Mrs Fringe on Inauguration Day, 2017? Thank you!

I’ve had this thought circling in my head for the past few weeks. I talked about it a bit with Nerd Child before he went back to school last week, and today it seemed appropriate for musing on the blog after 1 full week of Trump & Co in office. Yeah, I know, this isn’t a mom-blog and I already talk an awful lot about my kiddos, but bear with me, please.

Husband and I have always tried to do our best. We knew that wouldn’t always work out as intended, but still, parenting is a commitment we take seriously. A commitment to our children, but also a commitment to society. We do our best, and hopefully offer decent, kind, well-adjusted human beings who care about others, themselves (raising saints and martyrs was never our goal), and the world at large. How’s that for overblown navel gazing? And yeah, we want success for them. Success doesn’t have to mean a job making a bazillion dollars a year on Wall Street, but for us it means that in addition to doing something they feel good about, we wanted them to understand it’s important to be able to pay your bills, and do better than we have, a little more comfort, maybe even own a house.

But have we screwed them in the process? I’m looking around, taking stock of the past week, who’s taken office, been nominated, being confirmed despite (because of) no experience, no compassion, conflicts of interest galore and long documented overt racism; running the country, deciding to rip apart the social contract we’ve been building and trying to improve for over two hundred years…. Sure, greed, corporations, and selfishness have long been valued in our society. It isn’t brand new, the results of this election didn’t come from nowhere, regardless of how many want to pretend it has. There has also long been room for success from those who actually want to contribute, work with others.

Remember? One of the first things we all teach all children is the importance of sharing, waiting our turn. Husband and I taught our kiddos to do the right thing because it’s right, not because they might get in trouble, not even because of an afterlife. But because this life matters, and every life of every person matters. Trite but true, at the end of the day, can you look in the mirror? This week has shown us a whole different world. At first I typed new. A new world. It isn’t though, is it?

Today happens to be International Holocaust Remembrance Day. And today, Nikki Haley, the new US ambassador to the United Nations, addressed the UN and said, “for those who don’t have our backs, we’re taking names.” Trump is signing executive orders to begin building That Ridiculous Wall (the one that still makes zero sense), still discussing a registry for Muslims, will restrict incoming Muslim immigrants (unless they’re from Muslim countries his companies do business with), and is denying entry to Syrian refugees. No, not new at all. No wonder they’re so enamored of that fascist “America First” slogan.

And by the way, in case you’re thinking all of this is being done in a (misguided) attempt to actually protect American citizens, ha! This is the sneak-peak proof that this administration and the GOP couldn’t care less how many citizens are left without adequate healthcare in this country. Why let people know they still have a few days left to sign up for a year’s worth of care? Sure the ads were already in place and paid for, but, well, fuck ’em. I can’t address the beginning of the dismantling of women’s rights and health care in this country. Not yet.

So yes, in with all the other worries and panicking I’m doing about medicine and health care and civil rights and ohmygodhehasthefuckingnuclearcodes, I’m worrying about my kiddos; if they are prepared for this next page in American history, where might makes right and sharing their cookies is a notion as quaint and outdated as teaching them to use a quill.

Much of me is overwhelmed right now, certain we have said goodbye to American freedoms, the true American values of equality, justice, social mobility, education, progress, and democracy. We haven’t always hit those marks, and there’s no question and no excuse– our “equality” hasn’t been equal, but we ~~have~~ had gotten better. Now I have to believe we didn’t do them a disservice when we taught our kids they have to be able to look in the mirror, and I have to hope the mirrors they look into are true and clear.

Hush

Conflicted Slippers

I don’t think I ever owned a pair of slippers before, but this Christmas, I requested and received these. Nice, right? Damn, these are comfy, cozy, and all kinds of aaah.

With the country seemingly on the verge of implosion by capitalism-run-amok, and rising uncertainties about, well, everything, the little things are feeling very important. Small kindnesses, small comforts. And then, three days ago, even these ridiculous looking fluffs took on another meaning. Trump, PEOTUS, tweeted a thanks to Linda Bean for what appears to be a questionable donation, and of course, telling everyone to support LL Bean. ’cause that’s totally what the President should be doing, right? Good grief, is there no respite from this bullshit–even in the privacy of my home, in my goddamned pajamas? No, no there isn’t.

Which brings me to my point. This week, as promised, the GOP took their first steps towards repealing the Affordable Care Act. Oh yeah, they also began clearing the path for future cuts to Social Security, Medicare, and Medicaid. Needless to say, I and many of my friends have been freaking out. No, this wasn’t a surprise to any of us. This is *exactly* what the GOP and Trump said they were going to do. That doesn’t make it any less horrific, terrifying, and downright immoral. And it isn’t just us, this “small” percentage (14%, last I saw) of families who have a child with medical needs. It’s everyone who has a preexisting condition, might ever develop cancer or other catastrophic illness, might have a serious accident, use birth control, or, yanno, would like to be able (legally and financially) to make decisions for our health–even if we’re women.

It’s true, I’ve seen a few posts and comments here and there from people who voted for Trump who are surprised and unhappy. Why yes, the ACA is the actual name for Obamacare, so you just voted to cut your own healthcare. You’d have known this if you read full articles and didn’t rely on memes and rally soundbites as the sole source of your information. Why yes, the Medicaid you were able to get because of Medicaid Expansion, part of the ACA. Why yes, your young adult child is able to stay on your health insurance until the age of 26 because of the ACA. Why yes, you were suddenly able to get health insurance you could afford despite preexisting conditions because of the ACA. Why yes, you/your child will continue to be insured and receive life-saving treatments that can carry a sticker price of hundreds of thousands of dollars per year because of the ACA–because yes, with the old “lifetime caps,” there were many who exhausted their lifetime benefits within 5-10 years of treatment. I would like a law that says people who voted for Trump and GOP lawmakers cannot identify as pro-life, they must identify as pro-birth, because they’re happy to watch all those babies die after they’re born.

Oh, I’m sorry, did you believe Trump and the GOP when they said they’d keep the parts you liked? I can only quote our PEOTUS, “Lies.” That shit was magical thinking, not a binding pledge. But many comments I’ve seen and heard from those on the opposite side of the political spectrum aren’t expressing surprise or outrage. Quite the opposite, they’re still celebrating, “the swamp is being drained.” Yes, and as it’s drained it’s being refilled with the raw sewage of unprecedented conflicts of interest, overt greed, racism, misogyny, homophobia, xenophobia, possible treason, and plain old hatred of the less fortunate.

Most of the comments I’ve seen and heard are the ones that prompted this post. They’re the ones that say, “relax. Being upset doesn’t help. Wait and see, nothing has happened yet.” Oddly enough these are the comments I’ve heard the most because I’m hearing them from both sides. It’s true, being upset doesn’t actually solve anything. Very logical, thank you, Spock. Guess what? Neither does burying your head in the sand. I’m no political pundit, but I’m pretty sure that philosophy/methodology is what got us here. You know what else? As the parent of a child with medical needs, the wife of someone with preexisting conditions, I don’t get to step away from this or wait and see, because those medical needs are every. fucking. day. and things are indeed happening.

The ACA is certainly not perfect, and there are people who have been faced with premiums that are unsustainable long term. Seems to me logic would say fix it, don’t set that shit on fire. Our social contract is rapidly becoming a social disease.

Raise The Stakes

When you write fiction, once you get past the technical/grammar/POV aspects, there aren’t a whole lot of rules. Guidelines, but those are flexible, boiling down to if you write well enough, if the story is riveting, you can “get away with” practically anything. There’s one bit of wisdom that I believe is a rule: raise the stakes. What’s the worst thing that could happen to your protagonist, the biggest muck they could make of the situation in front of them? Make that happen.

I remember, about a thousand years ago, the catchphrase in the pop psychology/self-help section of the bookstore was, “we write our own scripts.” Positive, empowering, offering the idea that we control what happens in our individual worlds. Imagine it for a second, with a laptop, a 99 cent Bic, or a pencil found in a goodie bag, we control it all.

Except we don’t. Sure we control how we respond to events in our lives, and many situations are the result of choices we make, but sometimes not. Some of these situations are the result of other people’s choices–say, being faced with terror of potential loss of health care and special ed services for a medical needs kiddo because other voters decided tax cuts and a pro life stance were more important than social services, social justice, and the needs of children and adults who’ve already been born.

The holiday season is always a bit tricky for those who deal with chronic medical needs. Those yucky viruses that are a nuisance for all can get complicated, more serious, and last longer than they do for the average healthy person. We’re quite used to medical mayhem here in Fringeland. It always sucks, but you do get used to the reality of a shifting normal, not necessarily expecting but being prepared for potential complications and unpleasant surprises. Or so you think. Because sometimes you go to Dr Pediatrician who sends you to Dr Specialologist who sends you back to Dr Pediatrician who sends you immediately to another Dr Specialologist who sees and diagnoses something completely unexpected, that may or may not have an underlying cause, but regardless, threatens the vision of kiddo. The vision. Both eyes. Of kiddo whose all-things-good come from the visual.

Yeah, sometimes shit just happens, and it feels like some sadistic fucking wizard behind the curtain is writing a manuscript where you and yours are featured, and (s)he’s snickering at they keyboard because they figured out how to raise. the. stakes. for the next few chapters. If I were writing this manuscript, this novel (remember–by definition, a novel is fiction) and wanted to raise the stakes for an already challenged artist? No hesitation, I’d threaten vision. If I actually could control this, could write my own script? Absolutely, I’d get my butt back in the chair, at the keyboard, and write for twenty-two hours a day. But this isn’t a novel, and I sure as shit didn’t write this manuscript.

I may skip decorating the tree, and let the crying sap be my holiday statement.

Can We Stop Now?

Shrouded

I didn’t want to do this. I didn’t want to write any more posts about shootings for a while. Not mass shootings, not shootings of police, not shootings by police, not the ever-confusing shootings of and by toddlers. The horror of the shootings that make headlines is how easy it is, for most of us, to understand that it could be any of us. To understand something has gone wrong in our society, in our schools, in our definition of protect and serve. That’s been made abundantly clear. But somehow, as these incidents continue and grow, instead of addressing how to fix things, real discussion is at a standstill, and there’s a divide the width of the Grand Canyon where it seems no one is listening: “Black Lives Matter!” “No, Blue Lives Matter!” Sigh.

I want to post about my continued quest for the perfect moon photograph, the sad state of my tank, summertime in the city, how frustrating it is to be a peasant, finding laughter in the absurdity of the everyday, blather on about writingnotwriting.

But here I am, again.

The victim didn’t die, there’s nothing to debate, it’s a blatant fuck-up. I don’t have the words for this one, thinking about it wraps my intestines tight around my shins and makes agoraphobia sound like an attractive alternative to stepping outside. A man with autism, in Florida, was upset and ran away from his group home. He didn’t run far, and his behavioral therapist found him sitting on the street playing with his toy truck. Someone called the police, reportedly stating something about an armed suspect threatening suicide. Maybe that’s what the caller honestly thought, maybe they were just frightened and freaked out by the man. Either way, when the police arrived, Charles Kinsey, the behavioral therapist from the group home, was sitting/lying on the street with him. In some ways I’ve been Charles Kinsey, and I know what he was doing, working to calm his client, set him at ease, and get him back home safely. It’s a hard, frustrating job that can shatter your heart ten times a shift while it simultaneously fills you with hope and appreciation for the small moments and subtlest of victories. It’s exhausting. But of course, I’m not a black man.

After the responding officers were told by Kinsey what was happening, told the supposed threat was a man with autism holding a toy truck (not “even” a toy gun), and Kinsey was lying on the ground with his hands up, one of those officers shot Kinsey in the leg. To keep everyone extra safe, after shooting three times, they rolled him over and handcuffed him. It’s ok, though, an honest mistake, the officer had intended to shoot the (white) man with autism. *sarcasm* Kinsey was trying to convince his client to lie on the ground, but his client was sitting and rocking, very very common amongst autistic people.

I don’t want to hear how police officers all over the country are extra jumpy because of the recent shootings of fellow officers. I understand that, and every shooting, fatal or not, is tragic for those directly involved and our greater community. I don’t understand a police officer so poorly trained that he would shoot at an unarmed man lying on the ground who had already explained what was happening. I don’t understand why we have police officers so poorly prepared to respond to calls in the community one would think for a second shooting at a vulnerable, mentally challenged, unarmed citizen (with what is now a common disorder) is an appropriate response. Who was he protecting? Who did he think he was serving? Excuses aren’t reasons, and excuses don’t erase repercussions.

Yes, in the chorus of recent shootings striking chords, this one is an off-key aria that terrifies me. It’s terrified many of my friends; one of our biggest fears, spoken or unspoken, playing onstage now under a merciless spotlight. With or without a diagnosis of autism, many neurological disorders come with a processing disorder. CAPD–Central Auditory Processing Disorder. Processing disorders mean physical hearing may not be impaired, but sounds and speech are easily muddied, resulting in delays understanding what is being said, often requiring calm, quiet, PATIENCE, visual cues and clues, and repetition. Thousands (maybe millions?) of children and adults have this disorder, it goes hand in hand with many learning disorders, autism, epilepsy, add/adhd, developmental delays, and sometimes it’s the result of medications slowing cognitive function. There are also several seizure types that leave the person seemingly aware, standing, sitting, maybe even walking and talking, but in fact the brain has “checked out” for a moment, or three, or ten. FYI, autism and epilepsy often go hand in hand. I’m not sure I have any fellow special needs mom friends whose children (regardless of age) don’t have either CAPD or a seizure disorder. Without autism, that client, the intended recipient of three bullets, could have been my child. Could be my child tomorrow. Could be any number of friends’ children; yesterday, today, tomorrow.

Stop pretending police officers are superheroes, or are supposed to be superheroes. We don’t need superheroes, we need human beings with critical thinking skills and compassion, who are trained in crisis management and deescalation skills at least as well as Charles Kinsey. We need law enforcement officers who recognize and acknowledge the difference–before firing their weapons–between an imminent threat to their lives and a pain in the ass who’s making them run, the difference between someone pointing a gun at them and a child or mentally challenged individual holding a toy. Stop pretending every day on every street in uniform in America is equivalent to being dropped into a war zone.

Yes, being a law enforcement officer is an often dangerous, always stressful job. I appreciate those who choose to take the risk and join their local force. I would appreciate adequate vetting and training even more. If we can not and do not feel safe teaching our children to approach law enforcement if they are in need, we can no longer pretend to be a democracy, we are broken. Shooting those who are unarmed, shooting at our most vulnerable citizens, is unacceptable. Period. Stop pretending this is protecting and serving anyone.

Imaginary Friends

Mystery flower. I've got a whole container of these very real flowers, planted by an imaginary gardener. Or the seeds dropped by the bluejay who comes to visit.

Mystery flower. I’ve got a whole container of these, planted by an imaginary gardener.

We all have those friends, who you meet and connect with, where within a short time you can’t imagine your life if you hadn’t met–but you know life would have been different; poorer, tea from a twice-used tea bag. I have a garden of friends like those, a veritable field of wildflowers, though most of our shared tears, laughter, arguments, and wine have been cyber in nature.

I hate those memes that go around, the articles about clever art installations mocking our dependence on the internet and smartphones. Do we miss the point, the moment, are we hiding behind our keyboards? Maybe, sometimes. But often we’re connecting, building new friendships and learning about points of view we wouldn’t otherwise see. Those memes dismiss the relationships, the access to viewpoints and information that broaden our worlds. They negate the very real support.

My first full online experience was a forum where I met other parents dealing with the same issues as I was, asking the same questions, feeling the same fears and frustrations, laughing at the same gallows humor, sharing dreams, hopes, denial and acceptance. Equally important were the adults I met in that forum who themselves had the disorder. Also asking questions, sharing information, making jokes and living their lives. If memory serves, before then my internet experience was limited to brief jaunts with Ask Jeeves. Since then, I’ve been a member of several online communities with various special interests, and made some friends along the way in all of them. But that first forum was special. What a shock it was for me to discover not all forums were as wonderfully accepting and supportive, with statements carefully phrased so as not to be misconstrued and questions framed to help gather information, not attack.

Maybe the stars were aligned and the moon was in the seventh house, I don’t know. What I do know is that we formed a tight, tight group that remains intact to this day, though none of us actually use that forum anymore. We’ve supported each other through medical tests, diagnoses, hospitalizations, dance recitals, IEP meetings, divorces, jobs, life. We’ve discussed fears of seizures being misinterpreted by overenthusiastic and undereducated police. Many of us have been fortunate enough to meet a few face to face. Imaginary friends who send real gifts, offer real advice, real laughter, provide an army of support to each other though various challenges.

Our children are ours. Face to face or not, we’ve cheered successes and cried over setbacks, we’ve watched each other’s children grow. Our online village. Our community, not dissimilar to being a member of any minority group. But not all of our children grow up. Some have children that mature and leave home, some have children that will never be independent. A few have children who have died, or will die. Sometimes this is known well in advance, sometimes not. We lost one of ours this weekend. I’m not specifically close with this mom, she isn’t one of the women I formed a relationship with over and above our common bond, but her daughter was one of ours.

Imagine SIDS (Sudden Infant Death Syndrome, what used to be called crib death) being a risk forever. Imagine a life where there is no age where the doctor says you don’t have to worry about that for your child anymore. In our world that’s called SUDEP (Sudden Unexplained Death in Epilepsy). Certainly not a common risk, but one that’s all too real. I’m tempted to say it’s the fear and knowledge of SUDEP that brought our group so close together, but I don’t think so. Many of us didn’t even know this existed until we were years into our common journey.

Imaginary friends? Maybe, but much like the mysterious life in my planter, the flowers that have bloomed, flowers of laughter, love, tears, and mourning–are very real.

Rest in peace, sweet girl.

Another Day, Another Mass Shooting

When Columbine happened, I cried. Virginia Tech, I cried. Sandy Hook, I cried. After Sandy Hook, I thought I was finished crying. Then came the shooting in Charleston, SC this past summer. I cried again. Yesterday’s shooting in San Bernardino, CA–I didn’t cry. I’m horrified, deeply saddened, my heart aches and breaks for those lost, injured, and those who have lost loved ones in yesterday’s slaughter. You know the one, in a Social Services center, where the developmentally disabled receive services. I’m disgusted.

When did these types of shootings become an acceptable part of the fabric of America? Last night I thought it must have been after Sandy Hook. But I purposely waited before trying to put a blog post together, waited until I was calm enough to think beyond what.the.fuck. Earlier in the day, before I saw the news from San Bernardino I was still debating whether or not I could write anything that made sense about this past weekend’s shooting at the Planned Parenthood in Colorado. Whoops, I blinked, new shooting. So I make no guarantees as to the coherence of this post, sorry.

This morning I’m thinking this “acceptability” must be older. Maybe 1984, when 21 people were slaughtered (also in CA) in a McDonald’s. After all, not everyone goes to college. Not everyone relates to seeing churches as a sanctuary. Not everyone had a warm and fuzzy school experience. But McDonald’s? What could possibly be more American, more of a symbol of capitalism at its finest, than McDonald’s? (Hell, when I had my first child, McDonald’s was one of my thoughts when deciding whether or not to raise my children vegetarian, and decided against it.) Maybe it was 1986, when “going postal” became a punchline after 14 people were shot and killed in Oklahoma. Come to think of it, when did these mass shootings become a sacred cow? Not that they’re in any way, shape, or form funny– but somehow they aren’t a subject open for discussion. Or study. Or, yanno, action.

My mind is peppered with questions, but not the ones you might think. We’ve had so damned many of these shootings, in so many ordinary places filled with people going about their lives, there’s no question that any and everyone in this country should be able to identify and understand this isn’t a matter of a hazy “them,” it could be me, or you, or anyone we care about. We’ve had so many I don’t care about the specific why or who of each shooter. White, black, brown, male, female, Christian, Muslim, right now I don’t give a shit. When we look at these mass shootings, we are always looking at American citizens taking out as many other American citizens as they can. I think we need to focus on the how before anything else. And the answer to how is guns. Easy accessibility and the attachment to them. It is bizarre, that we live in a society where the right to own a personal, literal arsenal is considered so holy, we aren’t even allowed to research it.

Because, as the Facebook memes say, guns don’t kill people, people kill people. This is true–and they kill each other with guns. We passed the time when access to legal guns should have been given (much) tighter restrictions at least thirty years ago. It’s also true that increased background checks and tighter restrictions will not eliminate all gun related crimes and deaths. We can’t cure cancer, either, but we screen for it, pay attention to symptoms and warning signs, and treat people who are sick. Surprisingly enough, even though we have no cure for cancer, many of the people treated go into remission and go on to live full lives. Some don’t. If we used the same logic currently being used for arguments against gun control, we wouldn’t treat any cancer patients because some will die regardless of treatments available and used.

Last night I had a conversation about this with a friend who is also medical needs mom. Over the years, we have gotten very good at compartmentalizing. You kind of have to, in order to help your child as much as possible, but also to, well, live. Get the laundry done once in a while. Laugh. We have learned to accept what would have once been considered unthinkable, let alone acceptable. So I understand how and why we, as Americans, have learned to compartmentalize these atrocities, these types of “events.” When there are so many, we have to, in order to keep functioning. But there’s a huge difference in this analogy. We don’t stop caring and loving. We don’t stop doing everything in our control to learn what we can, access the best treatments, provide the best life. We don’t stop remembering our children, medical needs/special needs or not, are human beings. It seems to me it’s time for the larger we, the American people, to remember these victims (past, present and future) of gun violence are human beings. We’re supposed to care. Care with real discussion, not rhetoric. Care with action and the best preventative measures available.

“It’s too soon” is not a battle cry. It’s a deflection. And it’s nonsense when these horrors are happening so frequently there isn’t even a pretense of a time that isn’t too soon.

These shootings aren’t an act of God, a force of nature we’re powerless to prevent. We, as a society, are making a choice. We make a choice when we watch and read opinion pieces and pretend they’re news, we make a choice when we encourage hatred, when we value this life over that one, we make a choice when we tsk tsk about another mass shooting but don’t enact stricter gun laws. Federal ones.