Parting Clouds

I feel like this blog has been an absolute downer for the past year, though understandably so. The last year has SUCKED. I don’t think anyone had an objectively good year last year (except Big Daddy Elon Musk, but billionaires don’t count towards people having good years), and I was scrolling through my blog reflecting on how… just MLEH I’ve been about everything in the last twelve months. And again, completely understandable, but also I feel like that can’t have been fun to read. I’m sorry.

But here we are, encroaching on March 2021, one year of pandemic and social distancing and 500,000 people dying because assholes and masks and so on and so forth, and I’m actually starting to feel something that tickles a bit like hope. Real hope, not the false hope that kept popping up over the last year when people were naively like “it’ll be gone by summer!” or things like that. Real, honest-to-god hope.

After all, this is roughly the timeline they told us to expect back in mid-March of last year, when everything shut down and everything changed. Mid- to late-2021. We’re right on schedule. 

I’m getting my first Fauci ouchie tomorrow, 4:30 p.m. I don’t think I’ve been this excited about a needle since the first injection for IVF, way back in 2016. My state, dear old Massachusetts, has kind of bungled the process for people to make appointments–my dad, 68 and with a heart attack in his medical charts, hasn’t been able to get an appointment, so I’m refreshing all sites frequently to try and snag one for him–but by some flash of luck, I woke up the other day to an alert on my phone telling me that a CVS near me had appointments available. I fit squarely into Tier 2 of the second phase of vaccine rollout up here–obesity and asthma qualifying me as medically at risk of a Bad Time–so I signed up. 

And I’m ready.

(even if I’m a bit frustrated that Massachusetts hasn’t bothered to start prioritizing teachers yet while other states have and the websites to get appointments are basically strung together with some twine and duct tape and a few prayers and GOD, I wish I could take a hammer to said websites and get my handful of coding friends to rebuild them functionally from the ground up)

I have plenty of friends who’ve already been vaccinated for various reasons, ranging from frontline workers to teachers to people with medical issues and everything in between. Of that plenty, many have experienced the “your immune system is working” side effects–the aches, the fever, the chills, the generally feeling like shit from about hour 33 to hour 48 after the second dose. I’m ready for that. Kyle’s been keeping in touch with his boss about what’s going on, so with any luck, when I get the second dose, I can just coast through all of those side effects feeling vile but being mostly unconscious.

But I’m ready. I’m ready to not be afraid to go places besides Target or to not be afraid when I’m IN Target because the people behind me don’t seem to grok that six feet and six inches are not the same thing. I’m ready to feel like I’m not going to be putting myself in more danger if I have to go to the doctor for whatever reason (seriously, in the past year, I have avoided going to the doctor so many times I probably shouldn’t have because I didn’t want to accidentally expose myself). I’m ready to hopefully not be a link in a chain of people getting sick (like we don’t know yet that the vaccine prevents or reduces transmission, but the science–even with the new variants–looks pretty good so far).

And I mean. When even the most conservative estimates have everything easing up by summer, it’s hard not to be hopeful, outside of the trenches.

(in the trenches is another story, and every time I talk about hope, I think of my friends who do work on the frontlines and wish that I could somehow have a million dollars each to give them so that they could go on the most luxurious, relaxing, magical vacations of all time. Like hell, wanna spend two months on sabbatical in Hawaii? Go nuts, aloha. French Riviera whispering your name? Au revoir, you amazing heroes)

I’m getting vaccinated tomorrow, and then the twins turn three on March 14 and start school on March 15. Sending them in person isn’t a decision we made lightly; even though the school they’ll be attending has had exactly 10 cases out of 300 students and about 50 staff (and none of them in the preschool), the risk isn’t zero. On the flip side, though, Isaac has stagnated and regressed so much since daily ABA stopped, and I HATE phrasing it like that because it makes his autism sound like this horrible thing, and it’s NOT, but at the same time, I can feel how badly he wants to communicate with us, and goddamnit, I can try with the rudimentary PECS and I can say the words and do all sorts of things as his mom, but because I’m his mom, there’s a lot I can’t do. I’m not trained or qualified to do so much of it. 

He really was making such incredible progress when he had ABA five times a week, and I know the language is there. And he wants to express himself and is SO HAPPY when we understand him. And preschool will give him an opportunity to be better understood, whether that’s vocally or through signs or through PECS. Whatever he needs. I just want him to not feel like he can’t be understood, because to me, that’s about as lonely and terrifying as it gets. 

And Carrie is something of a ragdoll. She’s clever and sweet, and where communication is concerned, she’s at age level if not above it. BUT when it comes to physicality, her muscle tone is almost comically low. She seems comfortable wherever she is, which is great, but she gets tired quickly because she has to put more effort into making her muscles work than a kid like Isaac (whose muscle tone has always felt high to me because he’s always. so. tense.) or even Sam does. It impacts her ability to use her fine motor skills with holding a pencil or getting herself dressed and undressed, and I have no doubt it’s impacting her digestion. In the long term, it’s going to cause problems for her–she’ll be in pain, and I don’t want that at all. And if we can get started fixing it now, if I can get her therapy now, maybe she won’t follow in my footsteps and end up in remedial gym or getting an MRI for sciatica and feeling like she’s in her 90s when she’s not even 40 yet.

Plus, they’re SO good with masks. It’s kind of surprising, honestly. I would’ve expected the twins to just hate wearing a mask and to fight it all the way, but the two of them are absolute champs. They even have Barbie and Hot Wheels disposable masks along with the other disposable masks I’ve gotten them for the remainder of the school year. I think we’ll be okay. I think they’ll thrive in school, and I think we’ll be okay. 

For the first time in forever…

…I can kind of see the rest of the year clearing up, like the way the sky clears up when it finally stops raining after a particularly long stretch of wet days. I feel like when I say, “when the kids go back to school in September…” I’m not doing some sort of wishful thinking; I’m saying something that will happen. When Sammy goes back to school with his friends, when the twins are in preschool five days a week, when I see my extended family for the first time since Christmas of 2019. WHEN, not IF.

Speaking of Sammy going back to school (WHEN that happens), I got in touch with the special ed department at his school to see if they could evaluate him for ADHD and autism or at least just to see if he has anything that would require an IEP to deal with in the coming year. His therapists have him on a waitlist to see if he can be evaluated outside of the school, but because of Covid, that waitlist is excruciatingly long–we’re talking years–and I don’t want him to start second grade at a disadvantage. I know that whatever else is going on, he deals with a lot of executive dysfunction and hyperfixation. I know that his mind goes so fast from one thing to another to another, I know that he acts like boredom is torture. I know that the idea of failing at something even a little brings him to tears, no matter what reassurances we offer. I know that if he’s asked any question about himself, no matter how benign, he shuts down and furiously refuses to answer. 

I don’t know what that all adds up to. I do know that it affects his schoolwork. That he melts down when something is hard for him, that it’s an absolute WAR to get him to do his social studies and reading. That he doesn’t focus, can’t really focus, even on subjects he loves. But give him Pokemon or Minecraft or the deep sea, and he will tell you everything in excruciating detail. That he’s terrifyingly smart–doing third grade math as a first grader and absolutely OWNING it–but that he needs someone to help him apply that intelligence.

And I don’t know. Maybe it’s that I’m not as good of a teacher as I like to hope I am. When he’s on, he REALLY gets stuff. He’s getting straight As in math without even blinking, and I think he’s doing okay with improving his spelling and handwriting, but I feel like there’s something about his learning style that’s out of my reach, and if nothing else, I’d like to see if the staff at his elementary school can identify it. 

SO. 

A lot on my plate. Again. I can sort of feel my sciatica flaring, but I’ve been more careful to take time off and be diligent with my medication because I am NOT doing that again. I have an MRI to look at it up close on the 8th, and until then, I’m just taking it all one day at a time and knocking items off my to-do list little by little. 

And feeling like the sun is starting to peek through the clouds. Which is nice.

Ob-La-Di, Ob-La-Da

This was going to be a long blog post about the inauguration and politics in general, but that leaves me feeling tired. Suffice it to say that I’ve breathed a sigh of relief, but I also acknowledge that there’s a lot of work that needs to be done, and I’m focused wholly on the future and how to improve things instead of bemoaning the immediate past. The past informs the direction that we need to take as a country (a wholesale rejection of white supremacy, measures to rectify massive wealth inequality, having an actual PLAN for the pandemic instead of just pretending it doesn’t exist so we don’t spook the markets, etc.), but I’m through arguing about the past four years. They were politically terrible. Let’s move forward.

Instead, because I don’t feel like getting my blood pressure up today, I’m talking about life overall, or life in our house, at least.

Because it goes on. Like I said last time, insurrections, elections, inaugurations, Bernie with his mittens, it all happens and it all affects you, but at the same time, life goes on. You read a headline, you feel angry or sad or hopeful (which is new), then you have to run to the post office or call the kids’ therapists or something or another. Maybe you discuss it, you sign a petition, you run to a protest, you donate, but life is going on with or without you.

Life goes on. 

The twins had their preschool evaluations on the fifteenth, and it went well, I think. They met with the entire preschool team, with the physical therapist running the evaluation while the others–the teachers, the SLPs, the OTs–took notes and observed. Kyle, Sam (who was there because we didn’t have childcare for him), and I sat in a corner of the room that was separate enough for the twins to not zero in on us instead of what they were supposed to be doing.

They started out pretty shy. Carrie warmed up to the situation first, when she saw that they had a dollhouse, because she is quintessentially what toy marketing execs want a little girl to be. She loved that the dollhouse had a little toy cat with a little toy toilet and a little toy bed, and she spent a great deal of time meticulously tucking the toy cat into bed or settling it on the toilet, not really talking about what she was doing, just doing it. She was SO quiet that the SLP had to come over and talk to us about her speech, and we talked about her on bad days–preferring one-to-two-word phrases over sentences, even though she CAN use sentences, and murmuring nonsense under her breath to tell you things. She’s very stubborn, so if you want her to talk to you, she just will not do so. 

She also, apparently, struggled with her fine motor strength–not her accuracy, but her strength, coping the OT’s movements with her crayon but not really applying a lot of pressure.

And, really, much of the evaluation was for her. Isaac’s struggles are pretty easy to spot and pretty easy to describe. He spent the first ten minutes of the evaluation standing stark still like a statue and smiling shyly behind his mask. Though he eventually warmed up, he’s mostly nonverbal still (which is more of a “behind” thing than a permanent thing–he’s about where Carrie was between 12 and 18 months, and I think he’s mostly stagnated because the pandemic has prevented us from having in person speech therapy for a year now. Like, we work with him, but we don’t necessarily know what to do to encourage him to, for example, speak independently instead of parroting us) and has exactly zero sense of danger, which combines poorly with his extraordinary fine motor skills. 

(which sounds kind of cool, but you don’t expect your two-year-old to figure out how to unlock a window, create a tower of stuffed animals to reach the lock, unlock and open the window about two inches, figure out how to open the screen, open the screen, and then start tossing his toys down from the second story window. That’s a surprise. So yeah, the windows in the twins’ room are duct taped shut now)

But the evaluation was both to get an idea of where Isaac is and to see if Carrie actually qualifies for the preschool’s special ed program. She’s right on the border where she MIGHT need the extra help, but she might also catch up with her peers by just being with them. It’s hard to say. And it’s not a huge deal either way–when I talked with the head preschool teacher over Zoom, she explained that Carrie will have a spot in the program no matter what, it’s just a question of whether she’s there for free as a special ed student or whether we pay the $140/month tuition.

And even that isn’t a big deal. When Sam was in preschool at the twins’ age, we were paying probably… mmm, I want to say about $200/week because it was a full time private daycare. Which I LOVED, but I can even point to ancient blog entries I wrote here about how I realized that having twins meant no more daycare for anyone. So back then, I was wondering “omg how are we going to even afford preschool for them, that’s $400/week, that’s $1600/month, how can we do that, that’s a second mortgage?”

The idea of both of them going and us only paying $140/month? $35/week? It’s kind of miraculous. And if it’s free, I’m just going to do a dance.

We’ll find out sometime this week how things went, and then we have a meeting on February 2 to set up their IEPs (or IEP if Carrie doesn’t need one). And that’s WILD to me. I’ve talked so much about IEPs with so many people (my sister always had one, my mother-in-law is a special ed teacher, one of my besties is an SLP, etc., and that’s not even counting the huge village of parents of children with IEPs who are like “yes, I will help you with this, I will tell you how I best advocated for my kid”) that actually diving into one is like

Let alone diving into TWO.

We’re very fortunate. Our town is apparently one of the best in the area for special education from top to bottom (which isn’t surprising; everyone here is some degree of wealthyish and it looks like fucking Happy Valley from “Mickey and the Beanstalk” and then there’s me with my overgrown ugly lawn covered in dead leaves like “oh yeah, I totally belong here!”), so while I know I’ll have to fight for a lot of things, I don’t feel like I’ll have to fight as hard as I would have somewhere else.

(like apparently, my hometown, which is just a few miles down the street from me, has one of the WORST special ed programs in the area. They used to be good, according to all of our therapists and contacts, but nowadays, things are just garbage from top to bottom)

It’s a lot. But I feel ready.

And life goes on.

And it might end up being THREE IEPs, anyway. Sam’s been having in-home therapy for a couple of months now to deal with, oh, a whole bunch of things. His anxiety had reached a point where he wasn’t sleeping in his own bed at all, he has days where he barely eats, he’s an absolute ping pong ball if he doesn’t have something with a screen drawing his attention… it’s a lot. Kyle and I had a sit down talk with the therapists over Zoom on Monday, and they suggested having Sam evaluated for both autism and ADHD. 

The autism bit has me a bit skeptical. They were noticing a lot of the outward signs, and I agree that Sam has a lot of sensory issues, BUT if he is autistic, he’s also the most adamantly extraverted autistic kid I’ve ever met. And that’s not to say that autism can’t look like that–it’s a sundae bar, after all, and you can have all sorts of weird varieties of stuff going on–but it’s just. I hate to say this because it’s so not clinical, but he doesn’t ping my autism radar the way Isaac did from ~day one. Isn’t that a dumb thing to think? Like “mom hasn’t ever gotten autistic vibes from him, not even a little” is not a good diagnostic criteria, and should not be used as a diagnostic criteria.

I took one of the screening tests for him, the one they use in clinical settings, and maybe I’m too close to him to see (but unless I’m missing something, I feel like a lot of these tests are just asking parents how their kid is anyway and then observing in a play setting?), but he scored way too low on the autism test to even warrant further testing. And again, maybe I’m just too close to the situation, but like. I can’t imagine I’m missing THAT MUCH, you know?

Now, on the ADHD test, on the other hand, he scored off the charts. Everything from his lightning fast mind to his constant movement (not stimming, just MOVING) to his general breakdowns if he gets a question wrong was right on there. But professionals who see him in brief settings keep saying “no, he doesn’t have ADHD, but he’s probably autistic.”

I don’t know how to respond to that! I go, I do the assessments that are available, and maybe I have confirmation bias or maybe I’m too close to the situation or maybe I’m just crazy, but I end up getting super low scores for autism and super high scores for ADHD and I just ???? am I missing something? I see this child all day every day. He’s my son. We talk all the time. We snuggle up at bedtime and go over his day. He tells me matter-of-factly how he feels about so many things. I know when I can and can’t push him on things, when we can work through something or when we need to disengage from it. I’ve SEEN him from the moment he was born, and I’m just so confused here. Are they seeing something I’m not? Are we all just misinterpreting the same information?

Anyway. We’re trying to get in touch with someone to schedule an evaluation for the next soon, because if he does have autism or ADHD (or sensory processing disorder, which I also suspect), I want to know ahead of time so that I can plan IEP meetings for when he gets back to school in the fall. If nothing else, I want to be able to talk to the school in general to say that while he’s soaring in math and science, and while he can read perfectly well, he struggles with handwriting, with creating sentences, and with reading comprehension. 

SO.

Life goes on.

It goes on for me, too. I started my inauguration day with a visit to an orthopedic specialist to talk about my back. Here it is:

Note how spines are not supposed to look like that. I apparently have slight scoliosis (less than a 25 degree curve, which means I’m not really a candidate for surgery, more for just PT and figuring out how to live life overall with a wonky spine), some twisting going on (though it’s unclear if that was just posture-related or is an actual Problem), and bone degeneration that’s a bit more than usually expected at my age (not quite 40). I’m supposed to be getting on a calendar for an MRI sometime in the next near future so that we can see what nerve involvement is there, and if there is nerve involvement (which there is, I can feel it), I’m a candidate to get an injection of anesthetic and steroids into my sciatic nerve in order to keep it from, you know, murdering me. 

It’s both vindicating and frustrating. On the one hand, I’m able to point to it and say, “LOOK, see, the fact that I’ve thrown my back out at least once a year since I was 20 has a REASON behind it. I’m not being overdramatic, I do have some issues that could stand to be addressed in numerous ways!”

But on the other hand, I feel frustrated that I’m just learning about this now, that I didn’t think to get it examined before, when I was throwing my back out with such regularity, not necessarily because I was lifting something wrong or doing something weird but because my back is just prone to spasms. I could’ve spent years working on this and not been here, feeling miserable and useless.

Oh well. The best time to plant a tree is 20 years ago. The second best time is today.

And life goes on. The pandemic is slowing, slowing, slowing. It doesn’t feel like a very fast slowing (because how would slowing be fast??), but it’s happening. If President Biden is able to really get his vaccination plan off the ground, maybe summer will be normalish, maybe we’ll go on a very short vacation to like Hershey Park and Sesame Place, maybe this isn’t a forever sort of thing. Maybe we’ll get on a plane again someday, maybe we’ll travel across the country and the world again. It feels possible, which is a huge step above where it felt even a month ago, and I’m grateful for that.

Until then, though, life goes on.

Check it off

This year, when we went to my parents’ house for Christmas Eve (we basically see them every week anyway), my mom talked about how she’d felt a bit like Christmas was another thing on her to-do list sometimes. That with everything to check off–the decorating, the buying, the wrapping, the cleaning, the cooking, the baking–it can feel like it’s just another Thing. And Christmas is absolutely my second busiest time of the year, no doubt. The March-through-July stretch is still a LOT crazier because every event every month in that stretch is a Big One, not an optional one, and none of them are my birthday.

But still. 

So yeah, Christmas is a crazy time of year, but it’s usually also a rewarding time of the year. Sure, I’m pulling my hair out somewhat when we try to finish up on Christmas morning so that we can get to my uncle and aunt’s house before everyone settles in for dinner, but then there’s the catching up with everyone and the laughing and meeting new babies and new boyfriends and sometimes, my uncle makes this amazing saffron cream pasta that makes you understand why people pay so much for saffron…

Which isn’t to say that this year wasn’t rewarding. It was, just. You know. Different.

Like all of 2020.

We’re still combing through everything the kids got. My parents and Kyle’s parents spoiled them, of course, because that’s what grandparents do, and our playroom is currently overflowing with both (a) boxes, and (b) toys. We’ve been bringing things out one at a time, all while trying to sort through what’s in the living room and find places for that.

Sam got a pair of robots and some video games for Christmas, along with a few Lego sets, because he’s frustratingly easy to shop for. He’s one of those kids whose interests are narrow and specific, so on the one hand, you know exactly what themes to hunt down in toy sections; but on the other hand, you’re just like… I really want to get you something different, but all you want are these things. But he’s seemed pretty happy with what he got, and I feel like his gifts have much more staying power than the twins’.

Isaac was the one I thought would be least impressed with his gifts, but to my absolute surprise, he’s the kid who took to everything the fastest and has been playing with his gifts most consistently. Santa gave him a singing Mickey Mouse train, Kyle gave him a weird musical toy called a “Rocktopus,” and my parents gave him a little red Playmobil minivan. The train and the Rocktopus are never NOT singing, and the minivan, despite being hard as a rock and full of breakable things, has become his first ever “must have it in bed with me” lovey.

And Carrie, who is every little girl ever, received pretty much the best gifts for every little girl ever: an Ariel doll, a makeup table (for pretend makeup, of course), a dollhouse, and a dress up gown with accessories. She’s been frolicking about the house in a whirl of joy, and when she’s done being whirly and joyful, she falls into my arms, sighing happily and saying, “Oh Mom. I you so much!” (which is her way of saying that she loves me so much)

So it’s been good. And Kyle and I spoiled each other, too (I gave him Whataburger sauces and a fancypants sleep mask; he gave me jewelry and my very own fountain pen), and we spent Christmas Day doing nothing but watching movies on TV while eating popcorn and pretending that it was a normal Christmas and we were totally at our local theater and not scrunched up on the couch and saying things like “SAMUEL MATTHEW, STOP RUNNING RIGHT NOW.”

We saw Soul first, and it was honestly one of the best Pixar movies I’ve ever seen. It’s hard to explain it because the plot is kind of loose? And the message is kind of loose? But it also was a film that wasn’t escapism, that didn’t want to be escapism, that wanted you to leave the theater-slash-living room and go live life, not just exist. And it was heavy material, but it was handled in a strangely effervescent way, so that even though it was a lot of DEEP questions that required a lot of heavy pondering, you didn’t feel bogged down by them. 

And it was gorgeous and made me more determined than ever to take the kids to New York when this craziness is over.

Wonder Woman 1984 was… eeeeeh. Kyle and I watched it after the kids went to bed, having our first “date” since the pandemic kicked in, and… eeeeeh. There was a scene at the very end that had us both sobbing, Pedro Pascal and Kristen Wiig did great jobs for the most part (the CGI got in Kristen Wiig’s way towards the end, which was a shame), and there were some fun moments, but… eeeeeh. It was disappointing. I didn’t go in with super high expectations, and even my lower expectations weren’t quite met, so that’s a shame. Still one of the better DC movies but… eeeeeh.

And thus the year is finally, finally drawing to a close. I know that the world in general won’t turn a magical corner on January 1 that has everything back to what we want it to be (though wouldn’t that be a trip), but at least we have the vaccine and a new presidency to shake things up a bit, and hopefully, by this time next year, I won’t be digging for scraps of things that made this year good. 

It’s funny. Back last December, I bought a memory jar for us to keep this year, figuring we’d have a lot of cool memories to read about on December 31 as we counted down to midnight. It didn’t last long, mostly because mindfulness, while awesome, is one of those things it’s harder to do when you’re in the trenches of motherhood. You know what I mean? Those days, those weeks, those years where you give all of yourself and then some, and you take a shitton of pictures, not to show off your awesome mommy skills or embarrass the kids in the future but because you can’t be in the moment. You’re clinging by a thread, and you want to remember the good, but you can’t focus on it because the bad keeps showing up.

It’s not been the worst year for me; by comparison, we had it pretty easy. Despite Kyle losing his job in the spring, he got a MUCH better job in the fall, one that pays more, even if the benefits need some work. Sam being homeschooled has meant I can really focus on him for hours at a time, despite the twins, and he’s been able to get a more individualized learning plan (read: my six-year-old is doing multiplication and division without even thinking about it, and it’s weird). He and I have had more than a few outdoor adventures, including a really fun hike back in October (sigh, that was roughly the last time I felt healthy enough to get out and go) and a visit to a nearby pond. 

Sam and Isaac both started therapy (in December and March, respectively) to help deal with everything. Isaac’s ABA has been better than I expected and not the nightmare I’d feared; Sam’s therapy has just started, but I can already see how he’s much calmer on therapy days than on days when his therapists don’t come. They’re both doing really well, and wildly enough, they’ll both be starting school again next year… in March and September, respectively. 

I was hospitalized for my mental health, and I’ll be real, it’s a miracle more people haven’t done that this year. I’m lucky: my husband noted that I was doing really badly (I legitimately do not remember this summer, that’s how bad it was) and MADE ME get help. I learned the difference between wanting to die and being overwhelmed by life (there is a difference), and I learned actual real coping skills. I’m starting maintenance therapy next week so that I can focus on keeping my brainmeats healthy instead of letting them slip and slide and become a mess again. 

I have a path forward for my physical health: my doctor has finally referred me to an orthopedic specialist for my back, and with any luck, I’ll have a specific way to get to a point where I can actually get out again (like I feel like I could now, but it’s cold and I’m also terrified). I survived the worst physical pain I’ve ever felt this year, somehow (wild thing about sciatica being that you’re in the worst pain of your life, pain so bad it gives you PTSD, but you are nowhere near dying, and when the pain ebbs, people mostly just tell you to walk and lose weight, like they do whenever you have a problem while fat). I had surgery and ruled out a major potential cause of my overall life issues. 

So it hasn’t been an all bad year for me. But I’m still eager for it to be over. 

I don’t necessarily think 2021 is going to be better overall, at least to start, just that we’ll all mostly be used to the chaos, so it won’t hit as hard. And slowly, slowly, things will get better. Plenty of people will still be idiots, of course, because that’s the world we live in, but idiocy can be mitigated by good people doing good things and stopping bad things. It’s going to be rough going. None of the positive things are quick fixes; they will take time, and they will need a lot of pressure, and just because things are no longer at an immediate boiling point does not mean things are better. Creating a better world is a true effort. 

With that in mind, I decided that no, 2021 is not my year. It is my bitch. I am transforming myself into a screaming banshee of rage and forcing things to get better. I will scream and I will fight and by this time next year, I will be able to say, “you know something, that wasn’t a half bad year after all.”

I hope you’ll fight with me. Until then…

Unmasked

I was born in 1983 and grew up in an age when girls weren’t really diagnosed with autism unless the symptoms they presented severely interfered with their daily life. A girl like me, quiet and awkward, a little weird, a little too obsessed with the Thing Du Jour (American Girl dolls, Mandie books, My Little Pony, Barbies, spooky stuff, etc.), mostly gets good grades but really struggles with homework in subjects she doesn’t like… I flew under the radar. I didn’t stim or do anything that would make me seem weird. I didn’t freak out when the sounds in the cafetorium/cafeteria were too much for me to handle, I just got really quiet and didn’t participate in the lunchtime conversation. I excelled in certain subjects and flailed in others. I was flawless when it came to standardized testing, but then got an 8/100 on a math test the same week I soared into the 93rd percentile for the NMSQT. 

I could talk, and I took care of myself physically, enough that I didn’t usually warrant a second glance. Oh, I got bullied and made fun of in junior high–brutally at some points–but I flew under everyone’s radar for the most part. I don’t think anyone ever clocked me as weird enough to maybe be autistic, because back then, in the 1990s and early 2000s, autism wasn’t as well understood as it is today, so my cocktail of manifestations didn’t alarm anyone.

That and I masked

Masking is pretty common in our world. We all wear masks sometimes to hide certain aspects of our personalities depending on the situation; for example, if you’re at an important job interview, you’re not exactly going to be showing off the part of your personality that likes to do keg stands or the part of your personality that likes to lounge around in the nude on weekends. There’s nothing wrong with either those traits or the masking of those traits. It’s just something that you do to survive socially, because your new boss does not need to know that you like a gentle breeze ‘round your privates on Sunday afternoons.

Where autism is concerned, masking is a lot more… consuming, let’s say. Autism isn’t a personality trait that shows up in certain situations (like even if I do like to run around naked on weekends, I don’t do that in the office); it’s the way your brain is wired. Not wrong, just different. The trouble is that different can be socially damning. 

I remember when I was younger, there was a kid on my school bus whose autism manifested much more noticeably than mine. While I would sit quietly and stare out the window, focusing on the cool sensation of the glass against my forehead, he would talk and flail and laugh, and the kids from the back of the bus bullied him mercilessly, sometimes going so far as to sexually harass him. He stood out too much; it was social suicide. 

And, well, I learned from that and from other small situations as I grew up that letting those weird parts of you show is too dangerous. That it’ll get you made fun of and torn to shreds. That you’ll be alone. I saw the girl who came from a lower income family, whose clothes and hair were always dirty, who always sat alone. She was too different; she was alone. I saw the kids who I now regret not befriending, who went on and on for days about D&D and all of those fantasy stories, and I saw how people avoided and laughed at them, and I learned a lesson. They were too different; they were mocked. 

You hide things, you know? Don’t talk obsessively about Disney World, that’s weird. Are you excited about that thing? Don’t flap your hands or bounce or do a little dance; that’s weird. Are you too tired to think? Don’t play with your hair; that’s unhygienic (Mrs. Dube, if you ever read this, I hope you feel like shit for what you did to all of us in your class). Everyone is having fun at this party, and even though it’s too much for you, smile anyway. People think it’s weird when you talk to them without meeting their eyes; make eye contact, even though it hurts. 

In a way, I sometimes felt like an alien, trying to learn the way that the world was supposed to work. It’s part of why I loved being onstage–it was like an evaluation of my ability to act like a human being. “SEE?” I could say, as I got into one of my character parts (I had so much fun with those). “LOOK AT HOW GOOD AT HUMANING I AM!” And I wasn’t weird or different, I’d unlocked the secret to being human like everyone else. 

And then the lights went out, I got offstage, and I was right back to being bad at being a person again.

(this all sounds very sad, but I promise, there’s good coming)

But one thing nobody talks about, when they talk about masking and autism and all of that, is the beautiful freedom of unmasking: of finding someone or several someones who catch a glimpse beneath your mask, show how much they love you anyway or even because of what they see, and help you feel comfortable enough to remove your mask completely, to say, “fuck it, I am who I am.”

My most obvious example of this is Kyle. Over the early years of our relationship, he peeled back layers of my mask bit by bit, knowing what was underneath but letting me take my time to show him. And now, my god, how comfortable I am around him! We were watching The Mandalorian a little while ago, the episode where Moff Gideon reveals that he has the darksaber, and I shrieked and started flapping my hands, which I never do because I know it’s a weird thing, that even if I have the instinct to do it, people don’t like it when you do it, but with Kyle, it just hit me that maybe it’s okay, that maybe he loves that about me, and he does, and he smiled at me and just said that he knew I’d love that, and that was that.

GOSH I love him. 

And I’ve been thinking about it, and I realized that my first intentional unmasking came when I did my semester at Oxford back in 2004. Away from people who knew the masked me, away from anyone who knew the big long plans I had for my life and the narrative strand I wanted my life to take, I felt free to just… be. Not to the extent of flapping my hands excitedly about things, but I went in exhausted, torn down from a shitty relationship right before I left, and basically stripped down to my essentials to a point where I just… couldn’t be bothered. After all, it was only 100 days, and if my housemates thought I was too weird, we’d all be going to different corners of the world after that anyway.

But they didn’t think I was too weird. Pretty weird, I’m sure (I am pretty weird, after all), but they liked me, the me with only the barest of masks on, and the best part about that was how it allowed me to solidify who I am, not just which mask I’m wearing. And since that point, I’ve been a lot less interested in hiding any part of me: autistic, neurotypical, pleasant, unpleasant. I am who I am, warts and all. 

I also look back and think about the handful of “ones that got away,” you know, the people with whom you know you could have had something special, that even when you’re perfectly happy in the life you’ve got now, you regret the way things ended. And I realized that the ones that got away, the ones I wish I had actually connected with for longer than a millisecond, they all peeked beneath that mask and tried to let me be myself… and I got scared and ran, because even with that reassurance that hey, I love you for who you actually are, it’s hard to trust. 

Because you know, you get people who want to remake the mask into something more to their liking or you get people who trust the mask is reality, but when someone genuinely wants to see what’s beneath the mask before you’re ready, even if they like what they see, you get scared. 

Anyway.

Isaac, so far, has no mask. He looks to his brother and sister for information on how he should behave as a person–it’s fascinating to watch in real time–but he doesn’t pretend to be anything other than who he is. And he is an absolute delight of a child. He’s creative and funny and an absolute little shit in the best way possible. 

(parents know that when you’re calling your kid a little shit, it’s not because you don’t love them; it’s because they figured out how to do something they weren’t supposed to do in a way that you can’t help feeling a little bit proud of. Like, no, you’re not supposed to have eaten 32 cookies before dinner, but the Rube Goldberg device you built to access the Oreos is technically amazing and I’m sending in your application for Mensa while also sending you to your room)

We call him our little rogue, because we are a D&D family, after all. Sam, with his strong sense of personal rules and tendency to charge headfirst into everything (walls included) is our paladin. Carrie, always performing and able to reduce you to giggles or tears with a single look, is our bard. But Isaac, climbing and sneaking and figuring out every possible puzzle, is our little rogue. 

He likes to build and set things up in particular ways. He uses the books in his bedroom to make smaller rooms–setting them up at the foot of the bed or against the wall to make into a room with a door that opens and closes. And sure, he tears the pages out and tosses them around like confetti (we are down to about 3 books that he hasn’t destroyed, save for the older ones that come into the room for bedtime and leave afterwards), but the amazing creativity and cleverness he exhibits to build his own little rooms like that just astounds me. 

And then his cars. He’s doing the stereotypical lining up cars thing, but he does it in such a way that the cars all face out of the window through which he watches cars coming up and down our street. And I just flail because what a guy! What a clever little dude! What an amazing mind at work! 

We never discourage him from stimming; instead, we stim with him, the whole family gets involved. We turn on his favorite music, and the five of us just rock with him, and he has this HUGE smile on his face because he’s not alone. His family gets him. We’re not going to stop him from being who he is. 

I think the fact of him eventually masking is inevitable; even in a more enlightened world, 30 years after I was a weird kid combing her hair with a fork in the first grade, you can only deviate from the norm so much before people start giving you a wide berth. He’ll have a teacher scold him at some point for rocking too much during a test or he’ll get teased for talking too much about cars with another person. He’ll learn to hide those aspects of himself for a while, around people who don’t know him well enough to love him for who he is. And I hate it.

But.

I hope that Isaac understands this: that he doesn’t need to mask around us. That we’ve seen the way he’s made from the very beginning. We know why he does what he does, and we love it about him. Isaac, unmasked, is the person we love and always will. 

November

This month has been here for roughly two weeks, and it’s already established itself as wild, even by 2020 standards, and as a month that nobody understands why it’s here already, as if the rest of 2020 hadn’t lasted for 70 years. But here we are, November 12, and I’m overwhelmed with all of the things I’ve accumulated in my mind this month.

(the arrows are the things I’ve accumulated in my mind this month, for reference)

We’ll start with the end of last month.

On October 26, I went in for laparoscopic surgery to see if I had endometriosis and, if I did, remove as much of it as possible. The surgery didn’t make me nervous in the least; when you’ve been through as many cycles of IVF as I have, things like anesthesia or the usual surgery worries kind of roll off you like water off a duck’s back. I was actually kind of looking forward to all of it, because it meant a day where I wouldn’t have to juggle the kids and everything about the house but could just rest and heal.

The surgery itself went about as well as I could hope, though my doctor didn’t find any endometriosis. He did find a non-zero number of adhesions in my abdomen—basically scar tissue glueing my organs together—from a previous surgery, probably my C-section, and he removed those. And honestly, that seems to have done the trick? My only pain right now is from sciatica, which is a BITCH, but the abdominal pain seems to have utterly vanished, and I’m LOVING it. It’s a good step on the road towards eventually yeeting my uterus and ovaries into the sun, because those bitches have been nothing but trouble for me. Couldn’t even manage their biological function without scientific intervention, stab and crush me on a monthly basis for the past 25 years… fuck them utterly.

Even though my adhesions likely came about as a result of my C-section, I’m still glad I had said surgery, and I still look back on it with a lot of fondness. It was a really good experience, genuinely—from it being 100% my choice to the way I was cared for before, during, and after the procedure, I wouldn’t change a thing. But that’s a rant for another day. 

So I’ve been recovering from that surgery for about two weeks now. I’m at about 85-90% functional most of the time, though I still get tired way more easily than I did before the surgery. I also have had to get creative with twin parenting, since I wasn’t supposed to pick up anything heavier than 10 lbs for the first two weeks after the surgery, and the twins are much more than 10 lbs. And they’re two, which means they’re getting into EVERYTHING and living life on the edge. Isaac’s latest game has been getting as close to the television as possible, despite the playpen fence we have around it, and my only tactic for dealing with that is to pathetically holler for Kyle until he’s able to come and rescue our son from trying to pick Donald Duck up from the TV screen.

Carrie, meanwhile, doesn’t need to be picked up because she merrily plops herself right in my lap at all times, sometimes to disastrous effect. The other day, I was sitting on the couch, minding my own business, and Carrie pranced up to me and proceeded to throw herself—elbow first—right on top of the incision at my belly button, popping it right open. Fortunately, it’s since closed back up (laparoscopic incisions heal pretty quickly, and I got on it with a bandaid right after), but oy. Recovering from literally anything with one toddler is difficult; recovering with twins is basically impossible, and it’s a miracle that I haven’t been eviscerated.

In the midst of all this, an election happened. 

Fortunately, Kyle and I had requested absentee ballots when our state offered them to everyone in light of the pandemic. We voted sometime in mid October, with me telling Sam how important it was to choose political leaders with good character (because we were studying good character in social studies and still are—citizens with good character are respectful, responsible, kind, and honest, per his curriculum). And then the surgery happened, and wouldn’t you know it, I was sound asleep at 11:30 a.m. on Saturday when the election was called for Joe Biden. 

Thank God. Like I am not religious, but thank God.

It’s hard to emphasize how difficult it’s been the last four years to raise kids to be proud Americans, to be citizens of character when the leadership in this country was so desperately lacking in it. I imagine it was similarly hard when Bill Clinton was off being a sleaze bag in the 90s (before anyone gets on me for “tribal thinking” or what the fuck ever). You want to tell your kids that character matters, that it’s important to be respectful and responsible and kind and honest, but then you look at the leadership in your country, and the people in the highest offices are the opposite of those things and, what’s more, so many, so VERY many people who voted them in have merrily embraced hatred and spite to the point where they’d rather see their fellow citizens die than listen to them. How can you teach your kid not to be a bully when the bullies seem to have all the power? How can you teach your kid the power and value of respect and responsibility and kindness and honesty when the world seems to reward the opposite?

Joe Biden wasn’t my first choice of candidate, but it’s refreshing to see someone who’s treating their colleagues and fellow citizens with respect, regardless of political belief, who’s responsibly planning his transition into the presidency despite all of the obstacles being thrown in his way, who goes above and beyond to treat individuals with kindness, and who, while not 100% honest, is at least not telling me that my eyes and ears are the ones lying. It feels good to be able to envision telling Sam about the president next year and not biting my tongue. 

But I don’t want to dive into it too much, mostly because I just don’t want to deal with the people bitching about this whole thing. They can all go hang out on Pander or Parlor or whatever-the-fuck, and I’ll be over here, sleeping a little bit easier these nights.

And there’s light at the end of the pandemic tunnel! I was already feeling better because of the election news, and then boom, the Pfizer vaccine is over 90% effective. I’ve been reading up on it, and this translates to only needing about 60% of the population vaccinated for herd immunity—how awesome is that? My biggest fear with any vaccine was the sheer number of people who wouldn’t take it—not from justified concerns but because it might give them 5G or something (ha! I wish! I could use a personal hotspot!)—negating its benefits. But here’s another area in which I’m breathing so much easier.

I’ve been thinking so much about what I want to do once things have cleared up, and I think one big thing will be taking the kids down for a three or four day weekend in Philadelphia. It’s educational, what with the Liberty Bell and all; it’s close to Sesame Place, with its autism friendly atmosphere; and I 100% need to find and hug Gritty, avatar of chaos that he is.

And then, I think, a road trip down to Texas again, with stops in Philly and Atlanta. Let the kids see their grandparents again, finally, see more of the country again—GOD, how I’ve missed being outside this little bubble. 

The twins are past due for their first trip to Boston, so that’s on the docket. We’ll take them with their stroller, probably down by Quincy Market and the Harbor, and we’ll ride trains to get there. Sam wasn’t old enough to appreciate being on a train the last time we took one into the city, but he definitely is now, and I can’t wait to take him. 

We’ll go to the mall again, eat in the food court, get truffles from Godiva, and browse the shops slowly and without worrying how crowded they are. The kids can go to the indoor playground and run around to their hearts’ content; they can go to the new outdoor playground down the street and do the same, no masks or worries. 

Kyle and I will have a long overdue anniversary date at the Melting Pot, and maybe another date at Chili’s, not because it’s exactly fine dining but because those are our places.

In September, the kids will all go back to school, Sammy to second grade and the twins to preschool. I’ll have precious quiet hours in the house to write more, to clean up more, to feel my own skin again. I’ll run errands without wondering if I’ve got enough masks or enough clean masks. We’ll go to the movies and eat popcorn and not care if the theater is packed. 

(…well. We’ll care a little)

We’ll see our extended family, my aunties and uncles and cousins that we’ve missed since last Christmas. I’ll see my cousins’ new little babies, and we’ll celebrate being together again with Feasts. 

(I feel like all of our third generation kids need “cousin crew” shirts for that inevitable meeting)

Sam wants to go to the beach, and of course we will, and build sandcastles and not mind that it’s crowded on a summer day. Maybe I’ll even wear a bathing suit this time. Like, it’s not LIKELY, but it’s possible. 

In other words, November has done to me what I never expected any month in 2020 to do: it’s made me back into an optimist, someone who’s looking forward to 2021, not just because it’s no longer 2020 but because it seems like it may bring something good after all. 

…but we’ll see. Until next time!

Breathe Again

2020 is still garbage, but at least the garbage is starting to look like nice garbage instead of a complete dumpster fire on a personal level. 

(globally, the dumpster fire still rages and leaves us with a LOT of work to do once the flames die down in the hopefully near future)

My time in the PHP has drawn to a close, but it ended on a pretty positive note. I actually stayed a week longer than anyone had planned because I started back on my birth control to try and calm some of the really wretched pelvic pain I’ve been dealing with for years now (still no idea when I’ll be having the laparoscopy to look at that, by the way, which is annoying). Back in April/May, we wondered if my birth control had contributed to my depressive downswing, so the psychiatric RN for the program wanted me to stick around another week in case she needed to make immediate changes to my antidepressant in response to my altered hormones. 

BUT so far so good where that’s concerned, so my last day in the program was on Friday the 18th, and I’m now readjusting to the world. One of the biggest ways the program helped, I found, was that it kept me from getting super overwhelmed by the sheer volume of STUFF on any given day with twin two-year-olds and a six-year-old, because the program is over and I’ve found myself feeling overwhelmed again. Not like I’m drowning but just like parenting three kids, two of whom are two years old, one of whom is autistic, another of whom has a tentative diagnosis of ADHD, plus homeschooling the oldest, and all of that during a pandemic… is a little much. 

Nothing has become less since I finished the program; if anything, it’s become MORE because the twins have to get used to me running ABA again and have been super clingy since I finished the program because MOMMY DON’T GO BACK INTO THE OFFICE AGAIN AAAA. The biggest difference has been that I recognize what’s going on and am able to stop it in its tracks with a bunch of techniques I’ve learned. It’s all dumb stuff that mostly relies on me recognizing that I am feeling overwhelmed and that I have a right to feel overwhelmed (and that, in fact, most people would also feel overwhelmed in my shoes), and that’s the hardest part. Depression is a sneaky monster, and it uses whatever looks even slightly like it to gain a foothold, and that’s the danger with it. 

BUT BUT BUT

I’ve also got a lot of things in my corner now. Like a better dosage of my medication (same meds, just more of it, which has slowly but steadily been helping me get to a better place), and like tools to help me recognize when I’m feeling garbage (all written down in the now very FAT notebook), and with all of that working for me, a weirdly genuine optimism. 

It’s weird to have optimism in 2020, but I do. The world is a garbage place right now, but there are still stars, and there are still Octobers and Novembers. Despite it all, people as individuals are good. The pandemic isn’t forever; even if things go horribly in November and incompetence persists past the point of overwhelming sense, pandemics eventually end. An overwhelming majority of the world agrees that climate change is an emergency that needs immediate tending. People care about each other. Vaccines are coming. And time passes so fast these days, which is how aging works, so by the time I’ve blinked twice, it’ll all be over and hopefully better for it.

I wonder if some of the optimism isn’t also because Kyle got a job.

Finally.

No details here, because details there are still being ironed out, BUT the long and short is that it’s a FANTASTIC position that will not only help our family financially (our primary criteria) but will also look AMAZING on his resume, and I’m really proud of him for getting the position and persisting through these last ~5 months where it all seemed really hopeless. 

The only downside is that the job is just north of Boston, an hour commute without traffic (lol no traffic going into Boston, bless). We’re going to drive the route as a family sometime in the next week, just to see how it looks and how stressful it is to get there and back again, like unto a Hobbit. The higher ups are pretty okay with Kyle working from home (since it means fewer days with hours lost to an exhausting commute), but it’s still a schlepp. 

But. We’re going to make it work. 

And with him working again, I feel like I can breathe again. 

*

In other news (in bullet list format because I take my antidepressant at night now, so I find myself being completely useless well before I want to be): 

  • I’m seeing a physical therapist for my everything. I went to the doctor about two weeks ago to see if I could do anything about my back pain that was coming along with the pelvic pain, and my doctor referred me to a physical therapist after taking an X-ray and seeing that my spine has a slight left curve and some minor bone degeneration (which is wild because I’m 36 and that’s not supposed to happen yet?). I’ve been doing those exercises for about five days and (a) ow, but (b) I’m already feeling an improvement. Essentially, the therapist found that my core muscles are a disaster area (no surprises here), so most of my exercises are focused on getting those working again so that the other muscles related to making me upright don’t dissolve from overuse.
  • Homeschooling Sam has been mostly good. He does better on days when we vary up how we study–read a story, get up and run around, watch a video, do some math. There are still more than a few days where he’s not interested in doing ANYTHING, but those days are becoming fewer and farther between. This week will be weird, since he’s having to wait to start until Wednesday (he had a doctor visit today and has a dentist visit tomorrow), but mostly, he’s blowing us away with how clever he is and how even things like third grade math are a breeze for him. 
  • The twins are talking up a storm–parroting (Isaac) and making up the most hilarious sentences (Carrie), and it’s a delight. 
  • And Isaac kept us up until 4 a.m. last night, so I’m going to cut this off here before my writing ceases to make sense. 

Until next time…

Hysteria

I have no idea how long this is going to end up being, but I wanted to get it down on “paper” just in case someone else is going through something similar and wants to know if anyone can relate (because yes, I can). 

About 18 months ago, I started having vague pain in my lower left abdomen, just a faint, bruise-like pain as I was trying to fall asleep. I could mostly ignore it except that last October, it got so bad that I couldn’t function, and I spent a morning in the ER over it, only for them to do a CT scan, observe that I hadn’t yet pooped that day, and diagnose me with a case of constipation that I should follow up with my gynecologist about (a.k.a., they had no fucking idea). 

And I did. I’ve mentioned here before that my gynecologist is awesome. He’s one of those doctors who believes you when you say that you’re suffering, and offers you whatever avenues could possibly exist to alleviate that difficulty. When I was pregnant with the twins and started getting the really bad itching that led to an ICP diagnosis with Sam (albeit, at the very tail end of the pregnancy when I was ready to deliver anyway, and my body just said, “listen, get the kid out of me or I am going to turn myself inside out”), he believed that it was a real problem, even if the lab results didn’t reflect that, and referred me to whomever he could in order to get me treatment that worked.

(in the end, it didn’t matter a lot because not long after the itching started, Isaac decided that he was done with being stuck under his sister and I delivered them)

So his initial steps were (a) to get me a consult with an endocrinologist because my ovaries showed signs of being polycystic; (b) to get me a birth control prescription to try and regulate my menstrual cycle some; and (c) to get me a breast cancer risk assessment as an added bonus. And, admittedly, with the birth control, I wasn’t having as severe pain. It was still there, but it didn’t have the highs and the lows it had without the birth control. The problem was that I got super SUPER depressed (remember that?) and didn’t know if the birth control was to blame, and anyway, I was having so much breakthrough bleeding that the whole thing just seemed silly. I thought he’d said that I should stop the birth control when I saw him back in May/June for the depression, and he thought that the endocrinologist said that I should stop the birth control, but ultimately, the birth control stopped.

SO.

Now we’re getting into July/August. Early August, I suddenly had agonizing pelvic/abdominal pain, like the kind of pain where you feel like you can’t see or think or breathe when it’s happening. It lasted for three days, also around the time that I got depressed enough to need the partial hospitalization program. Well, tl;dr – I got my period on day three. A nasty period. One of those ones that’s just… 

Yeah. 

The pain was bad enough that I could’ve probably gone to the ER for it, but here’s the thing: when you’ve been dismissed in an ER for pain you’re dealing with, you don’t trust them anymore. What were they going to do–give me another CT scan, tell me I was constipated again, tell me to go see my gynecologist? That would be $250 that we didn’t and still don’t have thrown towards an exercise in futility, so I just… skipped the middle man. I called my gynecologist again and said, in essence

I went to see him last week and had an extensive ultrasound, both transvaginal and abdominal. He found nothing on ultrasound but did notice that every time the probe or someone’s hand pressed on a specific spot on my left side, I would writhe in pain. Even if it wasn’t showing up on the ultrasound, something was clearly going on, and he decided that it would be a good idea to do laparoscopic surgery to investigate.

I haven’t had the surgery yet; it’s not for at least another three weeks, maybe more, since his calendar for the month is booked solid. BUT basically, it’s an exploratory surgery to see if I’ve got any endometriosis hanging out. 

Endometriosis is a condition where bits of your uterine lining (called the endometrium) somehow end up other places in your pelvis and abdomen. They don’t die there, though, and instead grow and shrink with your cycle like the rest of your endometrium. And it’s extraordinarily painful. If you’ve gone through childbirth, think about the pain of transition, and that’s about where I am right now. If you haven’t, imagine a giant bull has driven its horns into your lower abdomen and is using them to pin you to a wall. Every time you start to get used to having giant bull horns in your abdomen, he wiggles a little bit, just to make sure you know that yes, you have been stabbed by a bull. 

Or at least that’s what I’m feeling. The other fun thing about endometriosis is that you can’t really diagnose it without getting elbow deep in someone’s abdomen or giving them an MRI, and the surgery is kind of the more helpful step because if the doctor sees endometrial cells while poking around, they can just remove them right then and there and give some temporary remission of pain. 

(they can do this either with a knife or with fire, but a knife is the preferred method because fire can make your organs stick together, apparently, which sounds roughly as unpleasant as what I’m going through now)

So THAT is going on, and I’ve been having this specific bout of pain for five days now–my usual pain relievers haven’t been cutting it at all, so it’s this frustrating mess of misery, where I’m feeling mentally in a place where I want to get out and walk, I want to walk for 30 minutes, I want to hop in the shower and get clean, but I can barely stay upright for more than 2-3 hours at a time. I’m frustrated because this is depression behavior and would/will make it so easy to slide back to a bad place, but I’m just physically having such a hard time right now. 

And THEN, since I’m on day five of being stabbed in the abdomen by a large bull, I went to see my primary doctor today, and she pointed out that while she definitely agrees that it seems like endometriosis (we purposefully didn’t bring that up to see what she’d say, and she said it, so I felt validated), she also thinks I’ve got some sort of wonky thing going on with my hips/spine, because when she pressed on my spine to see how it was doing, it made me scream and writhe and also because I couldn’t lift my left leg very far without it shaking because it hurt so much. 

SO.

Now I have Xrays being processed, a prescription for horse tranquilizer levels of ibuprofen, a physical therapy consult, a laparoscopy to be scheduled, a partial hospitalization program, and a partridge in a pear tree.

AND I’m homeschooling Sam. 

Honestly, occupying a physical form is so dumb and pointless, and I would be much happier, I think, as a being of pure light and energy (that could still eat, because let’s be real, brownies almost make the horrifying ordeal of being mortal worth it). 

I’ll hopefully have updates on all of this hot mess soon. Right now, I’m feeling just barely well enough to sit up and spew words on a page because the huge ibuprofen hasn’t worn off yet, but it will fairly soon, and then it’ll be back to wondering if my uterus really is wandering my body while possessed by the devil. In the meantime, please enjoy Sam’s back-to-school pictures and the knowledge that, despite everything, he’s done really REALLY well with the first two days of homeschool. 

Something I never thought I’d say…

Little known fact about me: I was homeschooled for a year.

If I’m remembering correctly, the reasoning went something like this. My grades had been slipping for two years at that point, due to what I now recognize as my first ever bout with depression (because no, eleven-year-old me, wishing that you’d get hit by a car is not normal). I remember a lot of talk about me not knowing how to study, which is fair enough I suppose, and a lot of blame being cast at the decision of the school district to put me in a fourth grade class that was, charitably speaking, a disaster. 

(the same fourth grade class in which a boy gave me an index card with pee on it, in which I was so bored by the material that I took to drawing on my desk for hours at a time, in which I was a permanent member of the “100+ club” because I’d learned two years before that 0x0=0)

(if I’m casting blame for my depression, it falls at the feet of puberty hormones, a pair of abysmal school years in a row, and plenty of bullying)

So I was homeschooled for eighth grade. My sister was homeschooled the same year, because the district was thoroughly messing up the accommodations for her learning disability (at one point, someone caught her closing herself in her locker during a break in classes because she didn’t want to do her assignment). My brother was homeschooled the same year because it wouldn’t be fair to leave him out. 

It was a weird year. I know that, at the start, I was… reluctant, to put it gently, and by “reluctant,” I mean that I remember having some screaming afternoons for no reason beyond that things were weird; but I eventually got the hang of learning at home, especially after we got into a routine that largely consisted of schoolwork ending by 12:30 every day and plenty of free time afterwards.

My parents used mostly religious curricula; I don’t think it was all A Beka, which was the In Thing at the time, but I feel like I used A Beka for math. My science book talked a lot about how evolution wasn’t a real thing and came with some supplementary materials on that subject, including a book I loved called “Dinosaurs by Design,” which had lots of informational pages on dinosaurs sandwiched between illustrations of, for example, Adam and Eve hanging out with a parasaurolophus. 

(I had to look up how to spell that, don’t judge me, when I was in my dinosaur phase, everything got its name from The Land Before Time)

The history text wasn’t terribly memorable. The English/language arts stuff was great, but then again, I’ve always been an E/LA person. I had to memorize a bunch of poems, and while I don’t remember how any of them went, I remember the act of memorization. For math, I did Algebra I, and I cheated so very much. Whenever my mom would leave me alone to take a test, I’d grab her answer key and input everything, which she must have known about, but it happened anyway. And then in June, as I was preparing to head back to public school (having apparently learned how to study), I had to take the Algebra I final at the high school and panicked because I’d been cheating all year and now my inability to math would be public knowledge and my parents would be furious and it was the end of the world…

…and then I got a 93?

Oh, and then every week or so, we hoofed it up to the nearest Christian school for my sister’s in-school therapy (I think? I don’t remember much because I spent the entire time reading Baby-Sitter’s Club books and longing after the smell of pizza in the other room), and most of what I remember about that was sitting in the front seat of our van singing off-key along with my Sound of Music CD.

Even 20 years later, I can’t decide if it was a good or a bad experience; honestly, I mostly settle on neutral. I don’t know if I actually learned to study or if my depression just ebbed somewhat. I was in honors and AP classes throughout high school, so something went right somewhere. And I remember, my first day back at high school, being beyond surprised when the friends I’d last seen in June two years prior not only remembered me but were incredibly happy to see me. 

(hahaha, thirteen-year-old me was such a miserable child, someone please go back in time and help her and also please de-frizz her hair)

*

Meanwhile, in the world of today, we’ve decided to homeschool Sam for the school year. 

I’m excited for it and simultaneously terrified and worried, because I don’t want to pull him out of school this year, but it honestly seems like the best option. Even in Massachusetts, where a lot of people have been doing really well social distancing and wearing masks, we’ve started seeing Covid-19 cases creep back up, which bodes incredibly ill for the school year. Had we kept up with the low numbers of the summer, I’d have been happy to send Sam back for at least a few weeks so that he could’ve had access to the school’s counselling services and learned to use the distance learning tools they’d set up for the students. 

But the numbers started to creep up.

And ultimately, Sam is… not the best at being self-guided. If we set him up on my computer or on a laptop and said “you need to do your schoolwork,” it wouldn’t take very long for him to end up on YouTube watching Markiplier play a game in which he’s a piece of bread (this is a thing, apparently). I don’t blame him for that, because he’s six. I barely know any adults who, when presented with doing work versus watching videos on YouTube, will easily choose the former. 

It’s the rock and the hard place I’ve been talking about. School isn’t safe. Distance learning won’t work for him. What are we supposed to do?

Well, it turns out that the answer is homeschooling. 

Just for a year, mind. I still think that Sam really needs that social aspect to his education, and that if Covid can get under control by next September (please please PLEASE), I want him to be back in a classroom for that reason alone. He needs kids his age. He needs socialization. He hasn’t had that in ages. 

But for now, homeschooling.

A friend of mine in the next town over posted a link to the curriculum we’re using; it’s called “Moving Beyond the Page,” and it’s largely literature-based and customizable. Sam’s a pretty smart kid overall, but he’s definitely far more advanced in math than he is in reading/writing, so we’re doing a first grade curriculum for reading and writing and a third grade (!) curriculum for math (because he can multiply and divide, and I listen to him do it and think how are you doing this, I couldn’t do that in my head until I was an adult). 

In my fantasy dream world, I’d want to grab one or two of his friends and their families and just do a small group working on the same curriculum, but that almost feels too risky and seems impossible. I wish there were a way to make sure he keeps in touch with his friends, but they’re all so young that the Messenger Kids app ends up being a “sometimes I remember to message my friends but mostly, I play games” thing. And I know that, if he’s anything like me, he’ll spend a lot of the first couple of months in screaming tears over our new normal. 

But. If he’s anything like me, he’ll adjust and come away better for it, having a good and fun (albeit very weird) year and blowing his future second grade teacher’s mind by asking them, “So when do we start square roots?” as everyone else is just getting into their times tables. 

Stuck

Like nearly every parent in the country right now (shh, homeschoolers, you can gloat about not having to change anything later), I’m facing a dilemma right now: do I send my kid to school in person this fall or do I try and do at-home learning for him?

It’s a rock and a hard place.

On the one hand, this pandemic is a serious thing, and I don’t believe that schools should be opening right now. Our state is doing pretty well by the numbers for now, but I look at sites like CovidActNow (www.covidactnow.org) and I see the states around us creeping back up to ugly numbers. I see people carelessly heading down to Disney World on a vacation–it can’t be that bad if Disney is open, right??–and wonder how much they’ll adhere to quarantine practices when they come back. I see things from the Federal government that make me wonder if they aren’t actively trying to make things worse, and also that something as simple as wearing masks to protect yourself and the people around you has inexplicably become as much of a political statement as open carrying in Walmart. 

(who are you going to fight in Walmart, anyway, the deep discounts?)

I read our state teachers’ union’s ideas for reopening, and they sound theoretically okay–phased, slow, paying attention to the numbers–but none of them want to risk their lives like this, and we shouldn’t be asking them to. Some people say that oh, it doesn’t spread among kids, so it’ll be fine! Other people still think that the whole thing is a hoax to get us all implanted with 5G chips so that Bill Gates can take over the world or something (I wish they’d implant me with a 5G hotspot; I’d take my family and my Netflix and go ride this nonsense out somewhere very far away from other human beings). 

And then there’s that… look, have you met kids? Schools are absolute petri dishes, and unless you’re going to be putting them in little bubbles for the whole day, they’re going to be getting themselves sick and getting each other sick. I remember Sam’s first year of daycare, he had a cold and ear infection every three weeks. Literally, every three weeks. And it put my job in danger because he couldn’t be at daycare with a fever and ear infection every three weeks, so I had to take off to take care of Sam, but that wouldn’t matter now because I don’t work anyway, BUT ANYWAY, the point is that any given virus will go around a school like wildfire.

Like another example. I remember when I was six, the chicken pox went through my school. This was before the vaccine, back in the days of ill-advised chicken pox parties (my parents did not have one of those; I just happened to sit near a kid who was patient zero for that particular outbreak). Even without the chicken pox parties, though, you couldn’t avoid it. If the kid next to you had the chicken pox, you were going to get the chicken pox. And that was doubly true for the everyday viruses that marched through the school like a faceless army on a mission. In the winter, we’d all rotate being out of school for days to weeks with whatever yuck was going around. Stomach bugs, colds, flus, all of it.

So the idea that Covid-19 won’t spread through schools like wildfire is kind of silly to me. The idea that it’s a risk worth taking is also kind of silly to me. I don’t want to get this disease. I don’t want my two-year-olds to get this disease. I don’t want my parents to get this disease. I don’t want my kids’ teachers to get this disease. 

The obvious answer to all of this is to keep Sam home from school until there’s a vaccine (please please please let one of the three or all three work, I don’t care which one, just please give us a chance to focus on fixing our inherent issues instead of watching the world burn down around us). It’s theoretically possible. We finished out last year entirely online, with twice weekly Zoom calls, new boxes of crayons as consolation prizes, and gosh I miss the first half of last school year.

Even if I didn’t follow the school’s inevitable plan, homeschooling is easier now than ever. A lot of my friends currently homeschool (dear international friends: the school systems here in the state were wonky long before the current disaster timeline, that’s why), and they’ve got kids Sam’s age, and they’ve all been sharing helpful link upon helpful link. So it’s a thought.

But.

Here’s the hard place.

The hard place is mostly a picture of my average day. The morning, from 8:30 until 11, is all about the twins. On any given day, I’m coordinating ABA (they still come into our house because they’re considered essential, thank goodness), plus 1-2 other therapies for each twin, all of them at random times in the day that have nothing to do with any logic that I’ve found beyond “this is what time I’m free.” Afternoons are free of coordinating, but that’s when I dive into trying to get Stuff done (as in, house management stuff: bills, trips to Target, making sure we’ve got the things we need, doctors’ appointments, etc.). And all of that before 5 p.m. so we can get the kids to bed at a normal time. 

Earlier, when this was all starting, Kyle took charge of a lot of Sam’s school stuff–he didn’t stare at Sam and force him to do stuff, but he was able to coordinate Sam while being a little light on stuff at work. He was also able to help set Sam up on Zoom for those calls, and when he lost his job about two months into this nonsense, he was even more able to help–he was a lot more hands-on, helped Sam with art and science projects, etc. 

BUT. Kyle will absolutely be in a new job by September (please please please or else we’ll have more to worry about than just Sam’s schoolwork), and while I didn’t worry about the impression it made when he was stepping away from waiting for his computer to load a build when he was at a company he’d been at for six years, I do worry about it at a new company. Whoever he works for will likely be “understanding,” but it’s still not a good look to get a brand new job and then spend most of every morning away from your work. 

All of this creates the hard place. Who’s going to teach Sam? He’s not old enough that I feel comfortable leaving him to his own devices–I know that if he’s left alone with the internet, he’ll be through with schoolwork and diving into Let’s Play on YouTube, which he’s not supposed to do, but he does when left to his own devices. This isn’t kindergarten, either. He’s actually going to have subjects to study this year, beyond just learning to read and write and very basic stuff. He’s going to have things that he needs to be taught, not just things we can throw at him and say “here, color this.” 

That’s not even getting into the social side of things, the other intangibles that come with in-person learning. Sam hasn’t seen other kids his age since May. He hasn’t spent time with people outside of the family in about as long, and I know that’s affecting him. He’s more anxious, more nervous. He wakes up at night at least 2-3 times a week, sometimes with nightmares and other times just wanting to be with us. He doesn’t want to go and play by himself at all, so his playtime has mostly devolved into video games, which I hate because I’m like–dude, stop playing video games. You have six sprillion Legos, you have such cool toys all over the house, play with those so I can stop feeling like I’ve been flushing money down the toilet the last six years. Every day, he checks his Facebook kids messages, but that’s a sporadic form of connection at this age. 

There’s no good answer. I still don’t know what we’re doing. And I’m angry that it’s come to this: that the alleged “greatest country in the world” couldn’t get our act together four fucking months ago so that, come the start of the school year, we could send our kids back safely. Because it’s not safe right now, but the costs to not sending our kids back are pretty high, too, and as a parent, I’m feeling entirely lost.

Brought to you by the letter D

Hello.

It’s been a Time, let me tell you. Two weeks since I last wrote, and everything is happening so much.

Drugs. I’m not talking the ones that you were warned against in the fifth grade (aside: when we had D.A.R.E., it was before there were any mascots or anything, and all we had was this… “music video,” if you can even call it that, of what we were supposed to believe were police officers singing, “Dare! For keeping kids off drugs!” and then this guy in the background would radically wail, “KIIIIIDS OFFFFF DRUUUUUGS,” and I will tell you that I do not remember anything about the program besides that specific snippet), but the ones that you get prescribed from your doctor. 

When I went to my OB-GYN for my crisis of intrusive thoughts, he had me talk with a behavioral health specialist (which is the new name for a shrink), and said specialist both prescribed me counselling and called my primary care doctor to request an increase in my dosage of my current antidepressant, Effexor. I had been taking 75 mg (the lowest possible therapeutic dosage), so now I’m up to 112.5 mg, which means two little capsules every day instead of one. About a week after that, I had a psychiatric medication review with a nurse whose job is doing only that ever to see if I should continue with the Effexor or if I should switch to a different antidepressant and/or take something else as well. This was a lot like my therapy intake appointment, where you just go through alllll of your issues, realize how long they’ve been issues, and feel like somebody’s just peeled your emotional skin off for a minute. 

Like. Normal therapy gets into these issues, but it’s a slower and more gradual process. Intake appointments get to the heart of things all at once. No slow, gentle “so what was it like during that one specific afternoon when you were eleven and those five boys in your class called you ‘ugly’ while you waited for the school bus?” but more of an “OKAY SO YOU’VE EXPERIENCED INTRUSIVE THOUGHTS SINCE YOU WERE ELEVEN AND HAVE HAD SUICIDAL THOUGHTS SINCE YOU WERE A TEENAGER, SOUNDS LIKE CHRONIC SUICIDAL IDEATION, NEXT TOPIC.” 

Anyway, the nurse (who was excellent; very to-the-point, and also very practical) ended up prescribing me a sleep aid called Trazodone to theoretically cut down on my bedtime insomnia from 2ish hours to 0ish hours, and I’ve been on that for about a week. I want to say that it’s working (especially in conjunction with Kyle and my decision to start taking melatonin at bedtime every night in very tasty cherry gummy form), but I honestly don’t know. I’m forcing myself to be more well-rested, by which I mean that I’m refusing to take afternoon naps even when circumstances would allow me to (read: no appointments for anyone, either virtual or physical), but I can’t tell if anything is working well because Sam’s in an anxious streak and has woken us up one way or another basically every night for a couple of weeks now. 

(more on that in a minute)

So that’ll be fun to talk to my therapist about. Meanwhile, I’ve also had an appointment with an endocrinologist (not a reproductive endocrinologist, because while I’m 100% for snagging one more girl out of our freezies, we need to pay the $3500 to have them tested and have Kyle actually employed before we strike on down that path) to try and start getting my PCOS better under control. Last October, I spent a day in the ER with agonizing pain in my lower left abdomen, which the ER diagnosed as constipation (even though, and this is TMI, I was and am regular for basically the first time in my entire life) but which my OB-GYN figured was probably related to my PCOS. We went down a path there of trying progesterone-only hormonal birth control (review: too much breakthrough bleeding, too much depression, nowhere near enough pain reduction) because I’m prone to migraine with aura, which makes me a poor candidate for estrogen usage; and I got a referral to the endocrinologist to see if we could make my hormones start behaving. 

That appointment was supposed to happen in either February or March, but either I was sick as hell or it was during the Great Cancellation Of Things, so the appointment proper didn’t happen until this month. After we talked about my symptoms (I am quite fat, I have wonky periods, I am very hairy, acne is my constant companion, getting pregnant was a pain in the ass, and my ovaries have the distinct “string of pearls” cysts on them), my endocrinologist ordered about six sprillion blood tests to check how my hormones were doing overall. Everything is consistent with PCOS (absurdly high testosterone, which I wish I could donate to some trans men out there, and hallmarks of insulin resistance though not diabetes), so she’s starting me on metformin (500mg to start, gradually increasing to 2000mg/day) to combat the insulin resistance, and I’m adding that to my daily regimen.

Basically, I’ve reached a point in my life where everything is measured in various pills; and that’s not even counting my migraine meds (because I only really take those when I manage to catch a migraine starting). And honestly, I don’t mind it much. There’s some faux wisdom about blah blah blah, being medicated is bad, makes you conform, something something 5G Bill Gates QAnon bullshit (or, on the other side of things, “all you need is fresh air and a positive outlook, plus maybe some crystals and essential oils!” Or both. Silliness has no boundary), but it’s like. Maybe I like not feeling like garbage. Maybe I like it when I’m able to spend an afternoon writing a blog instead of sleeping. Maybe I want to treat my body’s hormonal wackiness. Maybe I want to have the ability to feel genuinely happy, because depression has stolen that from me, and if I need medication to get that back, I will literally take all the pills

Like not to feel happy all the time. That isn’t how things work. I just want to be able to look at the days and weeks to come and not feel like I’m drowning. 

BUT ANYWAY.

Dads. This weekend was both Father’s Day on Sunday and Kyle’s birthday on Monday. I’ve spent a decent amount of time, therefore, baking and also organizing gifts and cards and the like. 

The baking was the fun part. I love baking; it’s one of those things that, if you know a few tricks and are very precise with what you do, people will love you for it. Kyle’s cake, catering to the things he adores in a dessert, was a red velvet layer cake with a s’mores filling (marshmallow fluff mixed with crushed graham crackers and mini chocolate chips) and decorated with rich chocolate buttercream, marshmallows, graham crackers, and candy bars. I don’t like to say that I’ve outdone myself when I bake something, but this time, I absolutely outdid myself. 

I also outdid myself showering Kyle with multitudinous gifts, each designed to remind him of one of his kids when he used it. From Sammy, he got the game of Sorry, because we pretty much just play board games with Sammy (Sorry is… not anyone’s favorite right now because it’s really frustrating independent of anyone taking revenge on anyone else, and we’re all learning valuable lessons about not trying to stack the deck, because the game Knows). From Isaac, he got what’s called a dice tower; it’s basically a better way of rolling dice that resembles a marble game…

…and makes satisfying “click clack” noises as the colorful math rocks descend. Isaac loves putting things in things, especially if that act creates a Noise, so the idea of him giving a dice tower was just irresistible. And from Carrie, Kyle received some of those colorful math rocks, specifically a dice set with pink and purple butterflies because that’s just who she is. Sparkles, pink and purple, butterflies, rainbows… that may change in the coming years, but for now, she’s my girly girl. 

Lockdown has been easing in a good way here in Massachusetts–at least out in our neck of the woods, people have remained compliant with mask orders, so some things are somewhat back to normal, and we’ve felt comfortable enough the past couple of weekends to go and visit my parents at their house (even though our house is now visitable with its delightful couches, we wanted the twins to get some time at their grandparents’ house, since they haven’t had much time there at all). We went there for Father’s Day on Sunday and enjoyed some takeout from Outback Steakhouse and some good visiting. My dad and Kyle both got cards signed by all three kids (some more legibly than others), and I got my dad a book of Dad Jokes, because he is the absolute master of them. 

So it was a good weekend with a lot of normalcy, and that was really good for my mental state. Yesterday, for the first time in I don’t even know how long, I felt wide awake without having to go and take a nap when the twins did (I try not to nap when the twins do, but usually when that happens, I end up so tired throughout the afternoon that I can’t function; that I’ve been able to go several days without feeling like I need a nap–today excluded for being a migraine day–has been really nice). I also managed to go out and run some errands like the world was back to something resembling normalcy and not just. Chaotic.

Problems have even started being more normal, too, specifically where Sam is concerned. He’s had a loose tooth for several months, as you do when you are five, and it got really loose the other day, probably earlier than it should have. I guess he bit down too hard on a piece of bacon, and that pulled his tooth away from the gum and, apparently, exposed a nerve. The dentist told us there’s nothing for it except to give him Tylenol or Motrin and Orajel, because pulling it before it’s ready would cause more problems than it would solve.

The trouble is that this small adventure has caused a lot of anxiety for Sam. He’s understandably wary about eating now, because his tooth hurts–last night, despite us having his favorite noodles for dinner, he sobbed hysterically and refused to eat them because he was afraid. And then tonight, he sneaked down to snuggle with me when he was supposed to be in bed and told me, “I know I’m supposed to be happy about my loose tooth, but it hurts so much, and I’m really kind of mad at that bacon.”

I told him that the only way he’s supposed to feel is how he does feel–that it’s alright and even makes sense for him to be angry about this happening, because losing your first tooth should be exciting, fun, and painless, not scary and painful. 

And then he wanted to talk about spiders, because he’s six.

His pediatrician recommended us to a therapist to try and help him cope with anxiety better–I think his is worse than it should be because he’s got parents who are prone to anxiety, so there’s that natural tendency to pick up on it, and since the two of us are only just learning healthy coping skills, it’s hard for us to teach him. With any luck, speaking with a therapist will give him tools to use now so that he can grow up and have a handle on this instead of growing up like we Millennials do. 

So we’ll see where it all goes. But hopefully, it’ll go good places. Until then…