The countdown is on, my friends: 39 days until the twins start preschool in our town’s integrated special education program.
I’ve had this countdown going for a while, but until Wednesday, it was unofficial. And admittedly, the situation isn’t ideal, but
Well, let’s start from the beginning.
Back in 2018, in August, Isaac started working with Early Intervention therapists because he had torticollis in his neck (which means that he had a hard time turning his head, probably as a direct result of it being firmly wedged up against my pelvic bone for the last 8 weeks of the pregnancy). He saw a physical therapist fairly often to gently ease him into having less of a stiff neck. About four months later, Carrie joined him in the arena of physical therapy, since she was being very slow in terms of gross motor skills.
As time passed, both twins gained more services–occupational therapy, speech therapy–and Isaac was eventually diagnosed with autism; and then, Isaac started ABA therapy and did fantastic with that, too. Up until the pandemic, the services we had were doing a fantastic job ensuring the twins were progressing in their development at an appropriate pace, and they had even started attending a once a week playgroup so they could start learning how a classroom worked for when they started preschool.
Because, you see, the beautiful Commonwealth of Massachusetts pays for therapy up to kids’ third birthdays–that’s what Early Intervention is. After the age of three, though, the state stops paying, and you have to hope that your kid qualifies for special ed preschool or even with insurance, you’re going to be shelling out a LOT of money for therapy.
So anyway. The world tried its damndest to stop last year but failed to do so, and the twins’ third birthday is rapidly approaching. Amidst my planning for a nice, lowkey celebration (read: no party whatsoever, maybe just my parents coming over, cupcake flavors, presents all purchased), we’ve also been planning for that transition, because as of March 15, the twins’ services won’t be covered under Early Intervention anymore.
None of them. Not speech, not PT, not ABA.
So about two weeks ago, we took the twins into our primary school for their assessments. It’s the same school Sam attended last year and will attend in the fall, and he was really excited and proud of it, talking about it as if he hadn’t been there in decades (“oh, yes, I remember the auditorium!” “of course, that’s the office!”). The preschool was set up in such a way that everything was absurdly spread out, which was a good sign; with OT and PT, we aren’t going to be able to keep the twins six feet away from everyone all the time, but seeing that the classroom was set up in a way that physical distancing was encouraged when it could be was reassuring.
During the assessment, Kyle and Sam and I sat at one desk off in a corner of the room while the twins played with the therapists in another corner. Carrie immediately took to the dollhouse they had and quietly set about tucking a plastic kitty she found into bed, while Isaac stood in one place and observed everything while smiling that amazing smile of his and making every therapist and teacher fall in love with him.
The whole thing lasted about an hour, maybe a little longer, and we were keeping our fingers crossed the whole time that both twins would end up qualifying for services. We never doubted that Isaac would–after all, he doesn’t speak independently yet–but we weren’t sure about Carrie. She’s behind, but her delays aren’t as obvious as Isaac’s, and her delays could probably be helped with a longer, slower path, if at all.
BUT the amazing therapists saw exactly who our twinsies are and saw where Carrie was struggling and where Isaac was struggling and recommended that they both attend preschool five half days every week.
And with the pandemic going on, I’d be reluctant to agree to that because there’s all these new variants making everything worse, and who knows when any of us will be able to get our Fauci ouchies, but today, we got the IEP with the breakdown of services.
If we leave out the preschool aspect (which would be roughly ~5 appointments per week), we’re still looking at $175/week for Isaac in copays and $125/week for Carrie in copays for all of that therapy. And they wouldn’t get that level of therapy outside of school, BUT a lot of it is stuff I feel like they’d really excel with having, stuff I never would’ve thought of, stuff that I don’t know they could get in an at-home environment because of the pandemic.
Carrie, for example. I’ve worried about her core strength and muscle tone for a while (she’s always been something of a ragdoll floppy baby–never in a way that makes you terrified, but she’s very good at molding herself to you), but never loudly enough to raise alarm bells to therapists and doctors. She demonstrated it so well during her assessment, though, that they planned for her to have just as much PT and OT as Isaac, and that’s a huge relief.
And Isaac has the full cocktail of services–PT, OT, speech, and ABA, all provided by the school. And I’m REALLY relieved. His ABA therapists have been great, but because of the pandemic, they’ve been really sporadic in their availability–going back to school, having to quarantine because a family didn’t bother to mention they tested positive, just unavailable because nobody wants to be going into homes these days. Giving him the opportunity to get those therapies in person five days a week… GOD, it’s just such a weight off my shoulders. He did so well with just ABA in the mornings from March through October, I can’t wait to see how he takes off when he’s getting all of these therapies all the time.
So everything is in review, I am buying six billion child-sized surgical masks every week (they come with Barbie and Hot Wheels prints at Target!), I am waiting for a TON of paperwork from the school, and I’m feeling an honest weight lifting off me.
39 days. There’s obviously some additional relief there, with me suddenly having MUCH calmer mornings than I’ve had in three years (let me tell you, in September, when we’ve all gotten our Fauci ouchies and everyone goes back to school full time and Kyle is commuting to the office 2-3 days a week and I’m ALONE for the first time since ~2013, omg, I am going to party SO hard, by which I mean I am buying a box of a dozen doughnuts after dropping the kids off and eating them ALL BY MYSELF and then enjoying the sugar coma until it’s time to pick the twins up), but most of it is a mixture of apprehension about Covid and relief about the services continuing with a much more consistent delivery that won’t completely bankrupt us.
I’m taking my time processing it all, and in the meantime, I’m just quietly shopping for first day of school outfits. In March. For twins. Who are almost three.
Because I can’t make the pandemic magically go away (if only), and I can’t look into the future and see that these services will work out really well for them both, but I can make them both look hella cute on their first day.
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.
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.
Because the wild thing was that before Wednesday, I was feeling really optimistic about this year; and I still am, mind you, but with the caveat that the first chunk is going to be a B I T C H, and the rest might follow suit, unless some serious changes start happening seriously soon.
I mean, things were really going well! Sam was having a very smooth first week back to school–we’d done all his times tables up to 9, we’d finished out a unit on description and attributes and were moving on to the senses, both ABA and Sam’s therapy had started back up and were going well, and even my therapy started with a really good session that left me feeling excited and motivated for whatever comes next!
And then Wednesday.
I don’t talk a lot about my politics, at least partly because I don’t know how to politically define myself. Words don’t mean the same thing now as they used to; a lot of the terrorists on Wednesday were thrilled to call anyone who disagreed with them a Communist, which is not at all what the word means. I can’t define my stance on economic issues with a single word; I can’t define my stance on social issues with a single word.
Whenever I take the (imperfect) political compass test, I end up solidly in the green square, but as anyone else in the green square can tell you, that tells you the barest of minimums of what I believe and think; so much liberal and leftist political theory is so nuanced that I feel like I need a serious polisci degree to actually be able to answer the question.
But here’s what I believe, without definitions.
I believe that, if we are to have a government that we pay money into (and we should), that government’s job should be to look after the people, all of the people, so that nobody goes hungry, goes without a home, goes without healthcare. If the government can do something to prevent any of those things, I believe the government should do something to prevent those things; otherwise, what’s the point?
I don’t believe the United States is the greatest country to ever have countried. I couldn’t tell you what country is the greatest country to ever have countried, because it’s a rare country nowadays that doesn’t have blood on their hands in one way or another, skeletons in their closet, that sort of thing. Putting countries on pedestals is such a dangerous thing, because it’s not realistic. It can make you think that a country is infallible; it can blind you to the things other countries do right because they aren’t your personal favorite.
I believe that we have work to do, and will always have work to do; that’s the nature of humanity. We work to care for each other now, just as we did tens of thousands of years ago while painting pictures on the walls of caves. Society as a whole is at its strongest when we care for our weakest members; conversely, refusing to care for our weakest members is a pretty good sign that we’re heading into “fall of Roman Empire” territory, and that we should probably be on the lookout for marauding Goths.
I believe that all humans deserve to be treated with kindness, dignity, and respect, no matter what they believe, the color of their skin, their ability or disability, their sexual orientation, their gender identity, the number in their bank account (or lack thereof), their nation of origin, their immigration status. At the same time, I understand the tolerance paradox: in order to promote true tolerance, the intolerant must not be tolerated.
(I also want to throw things when someone is like “hburr dhurr so much for the tolerant left” because none of us ever said we were tolerant of Nazis; that’s on you being a dumbass)
When I talk about politics, I don’t exaggerate to make a point. I grew out of that about 20 years ago. When I look at a group and say, “Wow, they seem like Nazis,” it’s not just me saying, “I disagree with them, and I must exaggerate to make myself look more right.” I don’t care about looking right or trying to paint my opponents worse than they are. When I say that someone looks a lot like a Nazi, I mean that someone looks a lot like a Nazi.
(which is such a pet peeve of mine; just because you called Obama a Nazi because you disagreed with him doesn’t mean that I’m doing the same thing when I say, “this person who wants to murder everyone not like them, who embraces fascist ideology, and has a literal swastika tattooed on their bicep is probably a Nazi”)
I don’t know why I’m enumerating all of that, except maybe to say that I’ve seen this coming since 2016. I remember when the election results made it clear what was going to happen; I was listening to Disturbed’s cover of “The Sound of Silence,” and I knew that if things didn’t go completely fascist, very quickly, they were at least going to try. And they are still trying, and I hate being right.
But the weirdest thing is how life goes on, you know? I was glued to the news all day and late into the night Wednesday, but Isaac still had ABA on Thursday, Sam still had therapy on Friday. I cleaned a lot of the playroom, breaking down Christmas boxes and putting away books. We had pizza delivered Friday night. I scheduled the twins’ preschool evaluation for this coming Friday.
You always expect that, during these Major Historical Events, everything just stops until things are resolved. Like whoa, hey, it’s Revolutionary War time, nothing is going on EXCEPT for battles with guns and ships and nobody is just living normal lives, but here we are. And shit, it’s the same all over the world. I remember reading one article recently where someone talked about how their camera roll had pictures of them out at a disco with their friends right after pictures of a building that was bombed just down the street from their house. The only thing that’s keeping life from moving forward more quickly is that there’s still a pandemic on, and even then, the vaccines should be widely available soon, so life will keep moving forward.
Are you supposed to keep working during a coup or can you take the day off?
I don’t know what’s going to happen in the next ten days. I’m afraid of them. People will tell me that I’m overreacting, the same people who said I was overreacting in 2016, and I want to believe them. I’m not losing sleep over this, thankfully, because I’ve got good coping skills (we’re practicing “radical acceptance” and also “sleep meds” right now); I’m not even being fully disengaged from my daily life because of it, because what can I really do?
If I’m losing sleep, will it stop more QAnon cultist terrorists from rushing government buildings like my almost three-year-olds when they want to get through the gate to the playroom?
If I’m constantly refreshing the news, will it stop the occupant of the White House from deciding that if he’s going down, we’re all going down with him, and starting a nuclear war?
If I’m NOT constantly refreshing the news, will it prevent a peaceful transition of power on January 20? Will it stop the FBI from arresting everyone involved in this disaster at all levels?
What can I do? I donate, I protest, I speak up when I need to do so, I stay informed, I vote, I breathe. I want stability, for my kids, for their future–no child should grow up in a land torn apart by war–so I pray to whatever may be listening that things get better. I read a book and escape to another world for a little while. I have some ice cream after dinner and think that I should probably take up walking and running. I count down the hours until my appointment for my sciatica. I live.
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.
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.”
It’s finally mid-December, which means we’re ~20 days away from this hell year being over. The FDA has approved the Pfizer vaccine with shots beginning ASAP (I think someone in the Massachusetts government was saying that the first shots would be going out on Thursday), so there’s a light at the end of the Covid tunnel; and a new president will be inaugurated on January 20 (although he’s not as progressive as I’d like, it’ll be nice to wake up without that sinking sensation of pure dread for a little while).
In my house, things are busy and have been, to the point where my body is 100% telling me to slow tf down, but it’s like… I can’t, because if I do, everything falls to pieces. I’m not saying this because I’m being overdramatic; sometimes SAHMing feels like being the manager for an entire company.
But I digress.
I said last time that I’d been planning to write about sciatica, and boy do I have a story. Towards the end of my partial hospitalization program, where I was feeling mentally healthy and ready to get there physically as well, I woke one day with excruciating back pain. Nothing touched it–not NSAIDs, not Tylenol, not warmies, not stretches. When I went to the doctor for it, the x-rays showed that I basically have (a) mild scoliosis; (b) bone degeneration; and (c) bone spurs in my spine, which explains why I’ve been prone to throwing my back out since I was in college.
(it was November of my junior year, I had just turned 20, and I had a lot on my plate: finishing out the semester, providing stage manager/dramaturgy stuff for our chamber choir’s Madrigal Feast, violin lessons, pulling my act together for a semester studying abroad at Oxford University, plus all the typical late-teens/early-20s drama that comes with being a college student. Oh, and that’s when I first got diagnosed with asthma and what’s probably chronic bronchitis, so yeah. A little on my plate)
My doctor had me go to physical therapy, and I was slowly getting better, but I’d also have days where I’d get worse. The pain seemed to be doing weird things, sometimes being very calm and manageable and other times being too bad for me to get out of bed. Eventually, by about mid-November, I found that I couldn’t sit up for long periods of time. I had to lounge on the couch or in bed with my legs and back in a specific position or else the pain would become unbearable. I started using a TENS unit regularly, trying to confuse the nerves in my back and leg, where the pain had now spread, and while the massage was pleasant, it didn’t do much long term.
This all came to a head in the days leading up to Thanksgiving. Even without the usual hubbub (read: 20 something people at my uncle’s house and baked brie and so many desserts and family for days), I had plans to bake cinnamon rolls and cookies and green bean casserole for our more subdued holiday (my parents, whom we see pretty much every week anyway, were hosting and making the pies). The Tuesday before, I had physical therapy first thing in the morning and felt GREAT, but that afternoon, we did pictures with the kids…
…which, don’t get me wrong, turned out AMAZING, but once we were done, I was in too much pain to do anything but go collapse in bed. I wanted to be at my best on Thanksgiving, so I decided to spend Wednesday in bed, recovering.
Well, silly me, because that’s the opposite of what you should do with sciatica, especially if it’s caused by a herniated disc (which I suspect mine is). Being horizontal spreads the disc material out and makes it bulge out more when you eventually, inevitably stand up (because I am not going to get a fucking bed pan for sciatica). So Wednesday wasn’t too bad at first–I spent the day lying on my stomach, doing press-ups as instructed by my therapist, and listening to hypnotherapy and guided meditation on YouTube to get my mind off the pain.
BUT sometime Wednesday night, all the things I had been doing just… failed. And Thursday morning, I woke up in blinding agony.
I have pain rankings, and this was only the second thing in my life to hit a 10. The first was gallstones, and those rank lower if only because they’re temporary. Once the gallstone breaks up or passes, the pain fades, and you go back to your life until it happens again. With sciatica, though, sitting and standing and walking and doing anything hurt like hell, and if you don’t figure out how to take care of it well, you eventually get to the point where there is nothing BUT pain. Pain is your existence, and you can’t remember a time without pain, and you can’t imagine a future time without pain, because that’s all there is.
Eventually, I was screaming. Just mindlessly screaming because it hurt so much. My primary care doctor had suggested that if my pain got this bad, maybe I should go to the ER, but I’d been avoiding an ER visit because our new health insurance has terrible copays for everything, to the tune of “an ER visit before you’ve met your annual out of pocket maximum will cost you at least $3500, and if you HAVE met your out of pocket maximum, you’ll have a $1000 copay.”
(MAN I am so glad that we pay 20% of Kyle’s paycheck to get THIS insurance instead of however the fuck much we would pay to get universal healthcare, like WOO this is so much better than living in Denmark and getting taken care of for the low low price of FREE)
But we called the ER and said I was on my way, and then I couldn’t even sit up at all, so we called an ambulance. I had to wait for the ambulance in the living room while screaming and crying and shaking from pain, and Sam had to see me like that, which I hate. I don’t remember anything about what I said or thought beyond “I hate that Sam is seeing me like this”–allegedly, I was telling the EMTs that I hoped they were going to get to have turkey, and I was really worried about making sure they’d have their turkey, but I don’t remember any of it.
They were great, as I recall–they gave me a nasal shot of fentanyl to take the pain from an impossible place to a place where I could be transported, and they were really funny. The pain did not go away completely from the fentanyl, but I stopped screaming for the ride and managed to get to a point where I was just lying there, quietly hurting, with nobody helping me.
That was probably the second worst part (the worst part was Sam seeing me like that)–being in the ER and nobody being there to even check in with me. They looked me over once I was there and gave me like… whatever generic painkillers they had available and eventually did prescribe me a nerve blocker called gabapentin, which has done WONDERS. BUT it also reminded me why I hate going to the ER for anything ever, because unless you’re dying or possibly dying, they sort of don’t pay attention to you at all.
And that’s understandable–there are a lot of people coming in and out of the ER, sometimes just to get painkillers, sometimes just to get an ultrasound of their baby, sometimes just because they’re like. Itchy. It’s especially bad now with Covid and people having to go to the ER because they might have it (on my way out, I saw three rooms designated as Covid-only). And I didn’t WANT to go to the ER, but my pain just got to an impossible point.
My therapist helped me with it this week. She told me that one of the hallmarks of chronic pain is that eventually, your body is too tired to try and fight it off, and the more you have on your plate, the harder it is for your body to work through the pain. Which was like, wow, I didn’t come here to be attacked like this, but that makes way too much sense.
There’s not much of a choice in the matter, of course. Kyle’s job doesn’t necessarily demand too much of him (he’s able to come out and help when I really need it, especially since after the ER), but he’s still working full time, and I’m full time with the kids. Especially during the holiday season, that means that my daytime hours basically evaporate, because there’s so much that I need to organize and do and make sure of, all while I’ve got three kids asking things of me at all times.
I’m not complaining. I love being a stay-at-home mom. But I think I might be reaching a pandemic breaking point, because said pandemic has unquestionably made things MUCH harder. There’s no chunk of afternoon time where the twins are napping and Sam is at school where I can just focus on getting household stuff done, whether it’s cleaning or setting up appointments or paying bills or whatever. There’s no time when I’m awake and not exhausted where I can just be.
I think I’d be able to bear it much more if I weren’t prone to chronic pain, but when you add all that work to the work of bearing chronic pain, the pain gets severe that much faster. You’re already exhausted from the everything–the kids jumping on the couches and knocking each other over and batting at Christmas ornaments because they want to be kittens, the homeschool battle because even on good days it’s a battle, the trying to keep up with everyone’s therapies like ABA and speech and coordination and whatever the fuck, the socializing that starts to feel like work because you’ve been overwhelmed with people being literally ON you all day, the weekends where it used to be getting more done but are now just gasping air before being pulled under again–and then the pain creeps in.
And pain is so exhausting. I remember when I was younger and used to get excruciating menstrual cramps (I found out while trying to have Sam that I had a tilted uterus, which has fortunately fixed itself since having kids, but let me tell you, it’s a for-sure recipe for very bad periods), I’d reach the end of the day and just fall asleep for 18 hours straight. There are a lot of ways to think about pain that involve accepting it and trying to help your body cope with it better, but sometimes, it really is just a battle that you end up losing.
So here we are in December. I can tell that if I weren’t on the meds I’m on, I’d be in a lot more pain, but the gabapentin is doing the excellent work of keeping the pain manageable, as long as I don’t push myself too hard and keep mobile. Sciatica is a weird thing where the more you’re able to stay mobile and keep exercising, the better it gets; but at the same time, when it’s at its peak, the pain defies belief, and all you want is for someone to just knock you out so you don’t have to deal with it anymore. BUT the meds I’m on make it possible for me to stay mobile, and I have a timer set on my phone that reminds me to get up and loosen up every two hours or so (I call it my dance break, and the twins participate, and none of us are very good dancers).
I keep doing Everything because I have to, which is something I keep thinking whenever someone remarks on us having two-year-old twins (and also three four-month-old kittens, more on that in a second) and asks, “how do you do it?” The only answer is that we do it because we have to. We had these kids, and we’re going to make sure they thrive. And there’s a light at the end of the tunnel–as I’m writing this, the FDA is an hour past approving the Covid vaccine for emergency use. By the time the twins turn three in March, we should be well on our way to getting our jabs, and in any case, the twins start preschool March 15 (assuming all things run smoothly). That will make things easier.
But in the meantime, I’m sitting here, feeling my leg be numb because it can’t hurt, and knowing that I can’t stop juggling all these balls or else everything falls apart.
And in the midst of all this, we adopted three kittens!
Honestly, they don’t add a lot to the load. We’ve been on waiting lists since Tinkerbell passed because I cannot go a long time without a cat, and the shelters we applied to wanted to make sure they paired us with kittens that could thrive in a house with three kids. I got the call Monday about a litter of five cats that had been raised with kids about Sam’s age and the caveat that I had to bring all three kids to meet them and the kids had to behave or else the kittens wouldn’t come home with us.
We went in wanting just two, but of the litter of five, two had already been adopted, and these three were the only ones left. And we couldn’t just LEAVE them, so.
They also kind of adopted us. Each one snuggled up to us and purred and rubbed against our legs and force pet us (you know, when cats bump their heads against your hand like “LOVE ME” and you’re like “I already do?” and they’re like “NO LOVE ME” so you do), and… well, they’re necessary. Not because we have any sort of mouse problem, not because I need more on my plate, but because they spark joy. A whole lot of joy.
Biggest brother is Duke Orlando Stinkybutt Catrissian, so named because he farts like an unholy terror. He’s a little fighty, but only with me or Kyle; with the kids, he keeps a respectful distance unless they’re petting him. He’s the most adventurous of the trio, most prone to getting into trouble and the murderer of at least one tree ornament.
Then we have Duchess Oreo Zoomies the Experience, who has established herself as Sam’s Cat. He named her–he saw the pictures of the kittens and decided that her name should be Oreo because she’s black and white like an Oreo. She ADORES Sam–hunts him down wherever he is and snuggles up with him. And she’s been so good for his anxiety, too, helping him to calm down and feel safe enough to sleep, even when he’s worried about something. She’s almost as much of an explorer as Orlando and is highly prone to Zoomies at all times.
Last, but certainly not least, is Duchess Orla With the Chanel Boots…
…who is Mine. She established herself as Mine when we were meeting them and she only came out to socialize with me and Carrie. She’s the shyest of the three, only really coming out for cuddles when the kids are safely in bed and Kyle and I are in a quiet place. Once she’s out, though, she’s a party animal but very ladylike about it. She’ll mince around the covers and attack our feet with the same attitude as Miranda Priestly going after an incompetent staffer. She’s adamant about being held but will also fight me forever about the cat pouch hoodie I bought (yes, I am being That Kind of Cat Mom).
And, well. It may have been biting off a lot, but I feel like the joy and stress relief they give with their cuddles make up for the buying food for three cats and scooping a litter box again and “what are you chewing on???” and “GET OUT OF THE TREE” and “Isaac, it is REALLY ADORABLE that you’ve decided to pretend you’re a kitten, but if you try to climb the Christmas tree, nobody will end up happy” and the “yes, Carrie, the kitty is sharp, have we learned a lesson?”
They’re necessary. They don’t feel like more on my plate. They feel like they’re individually taking the stress of having so much on my plate and dissolving it, and that’s a nice feeling.
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.
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.
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.
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.
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.
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.
I don’t think it hit me at home until last night, at around 1:30.
Kyle had already rolled over and fallen asleep, and I’d just finished reading an article about baby elephants (because the lack of motor control in their trunks is the cutest thing ever) and was rolling over to follow suit. And for some reason, that rolling over made everything hit me.
For months before now, my cat Tinkerbell was too frail and old to climb up onto our bed, and even when we lifted her onto the bed, she wouldn’t stay long, and her departure always made us panic that she’d managed to break something, because to the last, she was not smart enough to realize that maybe she shouldn’t jump off of things that are so high. But last night, for some reason, my arms felt really empty without the possibility of her being there. The nights when she would be on the bed, I would cuddle with her until she got fed up with me, and all I wanted last night was just one more cuddle, just one more hug.
It was pretty bad. I eventually got up (it was now encroaching on 2 a.m.) and got my old teddy bear from the bookcase where he’s been sitting for a while. He’s an ancient thing, a stuffed animal I got right around my first birthday, and he’s caught more tears and been through more hugs than almost anything I own. As toys in their 30s go, he’s not in the best shape, but he’s almost Real in the Velveteen Rabbit sense. Missing an eye, all his stuffing in the wrong places, a few awkward tears, burns on his back from one time when my mom tried to dry him in their fancy dryer and it was set too high for a nearly 40 year old bear.
But anyway, I haven’t held him while I was sleeping in a really long time; after all, I have a husband now. And last night, Kyle was there, snoring away, but I needed something smaller and more… I guess primal to hold onto. So I got my bear, Patchwork Bear. And I cried.
We don’t know what made Tinkerbell so sick lately. She’s been going downhill for upwards of a year, maybe 18 months, but we’d agreed at some point around the last time we spent $1500 because she was constipated that diagnostic tests were just too expensive for a cat that wasn’t likely to live much longer anyway. Any sort of treatments we’d give her would just stress her out and would ultimately be for us, so that we could put off saying good-bye and feeling like this.
And throughout the last ~18 months or so, she’d been somewhat normal. Lost a lot of weight, became more and more reclusive, but still wandered out and screamed at us to feed her first thing in the morning and last thing at night, still puked to show her displeasure, still loved getting pet behind the ears and under the chin and on the neck.
It was really just this week that she leaned into that decline. All of a sudden, she stopped eating completely. She stopped drinking more than kitty sips of water. She started to be incontinent. She was wandering places that she didn’t usually like to be–the front door, her old room, the dining room–and meowing for no reason.
We called the vet, and the vet confirmed what I already knew: it was time.
We’ve been talking about her death for a long time, because she was an OLD cat. Not record-breaking (she’d never have given us that satisfaction), but old enough that she’d stopped looking alive about two years ago. She’d had kitty incontinence for a while, which resulted in us closing off a whole room of our house solely for her use until she was in too much pain from arthritis and too tired to climb up and down the stairs (said room is, by the way, getting refloored as soon as I can get a decent estimate and get someone out here to do it). We talked a lot about the next cat we would get (“not until we’ve fixed the cat room!” Kyle continues to insist as I scroll through pictures of black cats and ginger cats and Maine Coons that look like Ron Perlman and Oriental shorthairs with ears too big for their heads), and it always came with the joke that she’d live forever just out of spite.
Spite fueled her a lot–after all, her first introduction to domestic life involved our dog excitedly deciding she was a new chew toy and putting her entire head inside of his mouth–but she was also very lovey once she decided you were Hers. She’d butt her head against your legs, roll around on the floor while giving you big cute eyes so you’d forgive her for puking her dinner up and asking for more. She communicated with a lot of squeaking and “brrt?” noises, and especially towards the end of her life, she’d give these purry, gurgly meows whenever we were petting her, as if to say, “Yes, that is delightful, do not stop.”
She was the runt of her litter, so she always ate her food way too fast, especially when there were other cats in the house; after all, if she DIDN’T eat the food fast enough, there might not be any left. And then, like the absolute genius she was, she would horf it all back up and beg for more. And just when I’d be SO. ANNOYED. with her for doing that, she’d delicately (or indelicately, when she was young and weighing in at 15 lbs) curl up right over my heart and fall asleep there, purring all the while as I inhaled her fur and had many coughing fits because of it.
Kyle and I took Tinkerbell to the vet for the last time on Friday night. Despite Covid, the vet’s office let us be in the room with them and her to say good-bye; otherwise, we’d have had to wait outside. They had a little electric candle that they lit at the front desk to let other families know to please be quiet because we were saying good-bye to her.
Very little of it was surprising or unexpected to me, because I’d spent the days leading up to her death reading about what would happen. I knew they’d put in a catheter, and I knew she’d fall asleep quickly. I knew it would be painless for her. I knew she’d let out a little sigh as the last air left her lungs. I knew her eyes would be open once she died, because closing your eyes requires muscle tension, and she had none once she was gone.
The only two unexpected bits were exactly how sick she was and how above and beyond our vet and vet tech went to make her happy and comfortable. Because as it turned out, she’d lost so much weight that she was down to less than 2.5 lbs. It took them a long time to find a vein for the catheter, but they assured us that was normal for a cat of her age (adding, too, that she was the second oldest cat they’d seen there lately; the oldest being 21). And then, when it was time to let go, the vet tech suddenly asked, “Does she like cheese?” and I managed to say that she did, in between sobs (those enormous ones, coming from a pain so deep inside of you that it’s part of your very making). The tech gave her one ENORMOUS squirt of squeezy cheese, you know the fake stuff from the can, and she devoured that so fast that he managed to give her two more before the vet was ready to administer the final injections.
And then, it was over, so fast that it didn’t seem real. I cried and I cried, but I didn’t hold her body or cuddle her or stay for a long time afterwards because… well, that wasn’t her anymore. She’s gone, moved onto her next kitty life (from her idiocy, I assume that she was pretty early on in the nine lives cycle; maybe her third or fourth life, tops).
I know you can’t really look at death and say that anything happens afterwards with real certainty. Despite not knowing, I take a lot of comfort in the fact that no matter what, if anything, happens to any extra-physical part of me–a soul or spirit or the me of me–the atoms that make up my physical body will return to the cosmos that birthed them and become parts of stars and flowers and cockroaches and raindrops and soil and everything else in the universe at some point. And maybe, by chance, my atoms and the atoms of the people I love will meet up and make a spiderweb or a comet or a cloud together. And the atoms from Tinkerbell’s ashes (since we’re having her cremated, rather than deal with figuring out whether we can bury her in the backyard and risk attracting the foxes and bears and bobcats that have been running around our town lately) might be part of that, too, and that’s comforting enough on its own.
But I still like to think (even though I couldn’t prove it and wouldn’t expect anyone to agree with me) that maybe, on Friday evening, a mama cat was having a litter and maybe, she had one girl kitten who was born with a taste for squeezy cheese, and maybe in 6-8 weeks, when the floor in Tinkerbell’s old room is all fixed and we’re able to adopt another cat, I’ll see her picture on a website; and when I go to meet her, she’ll start purring like mad–too quiet to hear but easy enough to feel–because she found me 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.
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.
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.
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…
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.
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.