my sam

Labeled

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Labels are a weird thing.

When you feel comfortable with yourself, you often don’t see the need for labels. Why label something? Why label anything? But the more you step outside the realm of what’s viewed as “typical,” the more you want to know what you are. If I’m not “normal,” what am I? Or maybe “typical” and “normal” are the wrong words, so let’s use the word “default” instead. Kind of like when you open a video game for the first time, you’re presented with the “default” option for character creation; that’s how life can feel. There’s the “default” option, and then there’s the rest of us, trying to figure out how we fit in, and that’s where labels become important.

A while back, I wrote about two of my labels: “bisexual” and “demisexual.” Both of those deviate from the “default” setting: heterosexual. The first thing most of us are exposed to in life, and the sexuality that describes most people, is heterosexual. That doesn’t mean that there’s anything wrong with not being heterosexual, but it does mean that if that word doesn’t describe you, you want a word that does describe you. And so, there are labels.

Labels that we talk about a lot in our family have to do with neurodivergence. Both of my sons are autistic; my oldest also has ADHD, we suspect my younger son will probably have that diagnosis when he’s a bit older as well (he certainly has the impulsivity for hyperactive type); my husband recently got a diagnosis of combination type ADHD, and I’ve been sitting here for years, calling myself autistic because it’s the label that best fit my experience with the world.

It still does, by the way, but things have gotten much more complicated.

Self identifying as autistic is a controversial thing, and people can get pretty cranky about it. The assumption is that some people claim an autism diagnosis–especially online–for various types of clout or as a kind of “get out of jail free” card. I’d say that neither of those things happen nearly as often as the cranky folks like to claim, though being an old on today’s internet, I can’t know for sure. It’s been my experience, though, that at a bare minimum, those who self-diagnose as being autistic don’t do so on a whim or for funsies, but because they’ve done as much research as they can reasonably do and have found that the diagnosis resonates with them… and because getting professionally diagnosed can be pretty difficult, especially as an adult and especially as a woman.

My own path to self diagnosis–and eventually, an unexpected diagnosis, but we’ll get there in a minute–started when my younger sister was diagnosed with Asperger’s Syndrome in the late 90s. She was 10 before anyone suggested that she might be autistic and 12 when she got a diagnosis (for comparison, Isaac was diagnosed at 19 months, and Sammy was diagnosed at 7). 

As my family learned more and more about autism (which, note here: Asperger’s Syndrome has been reclassified as simply being part of the general autism spectrum disorder list, at least partly because the diagnosis was created by a literal Nazi who wanted a classification for autistic people who were functional enough to avoid the gas chambers. The more you know~), we started talking about “autistic tendencies,” which isn’t a thing, but it was what we had to describe ourselves at the time. A lot of this involved talking about the more overt signs of autism that would tip off a neuropsychiatrist or two: stimming, rigidity when it came to schedules and behaviors, social awkwardness, sensory sensitivities, picky eating, echolalia, communication struggles, etc. None of it was ever severe enough to warrant assessments for my brother or I–we were mostly good students, albeit socially awkward with terrible time management and a penchant for not doing homework, but nothing about us raised flags red enough that our schools suggested diagnoses for us. As far as anyone told us, we were “normal.” Quirky, but within the “default” range.

The trouble is that no, I was not “normal” or “default,” and I knew it. Which is something I want parents to internalize because I’ve read and heard before of parents not wanting their kids to be diagnosed with something because they don’t want them to have that label or go through life thinking that they’re different. Your kid knows they’re different. They know that their peers do certain things more easily than they can. They know where they struggle. They know that they aren’t the “default” setting, and disallowing that label absolutely does more harm than good.

Because, you see, when nobody tells you that your brain works differently, so of course your experience with the world is going to be different, you assume that the problem is that you’re just not good at being a person. Which is where I was for most of my life. It was like other people had been given a manual on how to do certain things: how to read between the lines of conversations, how to not bump into walls or trip over thick clumps of air, how to recognize when it was their turn to speak or not go completely silent in an echoing cafeteria or restaurant. They knew by default the order that things should go in, they knew how to pay attention in class without doodling and how to do their homework all the time. They knew how to make and keep friends. 

And then: me. Socializing has always been an uphill battle for me. I don’t know when to say something or what to say or how to say it, particularly when talking to people face-to-face, unless it’s a conversation with a set sort of script (for example: “Doctor, I’ve been having worse and worse migraines for the past several months, and I wondered what we could do about that?” “Yes, I’d like to return this blanket because I accidentally ordered it in the wrong size.” “What time should I drop off my kids for this activity?” “What would you like us to bring to the Christmas party?”). I struggle to read between the lines of conversation, so those unspoken messages that are such a huge part of communication (some researchers say it’s at least 55%) go right over my head. I can write well, but most other academic pursuits are a struggle, and I can never get my homework done. I bump into walls, I trip over thick clumps of air, I sprain my ankle walking off a one foot stage platform. The louder the environment, the quieter I am. I fiddle with my hair, pick at my skin, bite my nails to nubs, pull out my eyebrows. I walk on my tip toes all the time, especially when I have bare feet. I hate wearing jackets, and I only started trying new foods once I hit adulthood and wanted to impress Kyle when we started dating (and by “impress” I mean that I didn’t want him to find out yet that I was a weirdo who subsisted on butter noodles and chips and salsa).

(which he did eventually find out, but only after I made myself look cool and default by eating ribs and drinking Dr. Pepper)

The explanations for these things ranged from physiological (“you walk on your tip toes because you have a short gastrocnemius tendon in the back of your leg and need physical therapy”) to complimentary (“you’re an absolute genius writer and breezed through the style class, which nobody has been able to do in years”) to insulting (“well that was stupid, why would you even think to put the papers in that order?”) to cruel (“you are lazy and terminally unprofessional, and unless you learn to shape up, you will never succeed in your career”), but they all seemed to boil down not to a difference in brain function but rather to a deficit in my behavior or personality, something that I could change, but I simply wasn’t for reasons that nobody could pinpoint.

And that’s a blow and a half to your self-esteem. It’s one thing to know that you struggle in areas where others seem to excel quite easily, but to have those struggles blamed on your own personality deficits is pretty brutal. And worse, I didn’t know how to repair these supposed personality deficits, because nothing I did–nothing anyone else did–seemed to work. Punishments, scolding, yelling, training, therapy, encouragement… it all seemed to go in one ear and out the other.

Which is why, when I started thinking that maybe, just maybe, I didn’t have autistic tendencies but actually had autism proper, it was like a weight slowly being lifted off my shoulders. It seemed that maybe I wasn’t bad at being a person, that maybe I hadn’t missed out on receiving the “how to human” manual. Maybe my brain just works in a different way from other people’s. Maybe I’m not “default” and bad at it; maybe I’m autistic and perfectly fine at being that.

It took a while of digestion to start accepting it, and I don’t think I really embraced the idea of being autistic until around when the twins were born, perhaps a little while afterwards. At that point, I’d left yet another job being scolded for things I didn’t realize I was doing wrong or things I was doing wrong but had no idea how to properly fix. I ended up with three straight years of being a stay-at-home mom without much of a break, save for my kids’ therapies, and that was enough time for me to start really looking at myself and accepting that hey, this is who I am. This explains so much about me. This is a label that I want to have.

The trouble is, of course, that self-diagnosis doesn’t get you very far. You can talk about being autistic, but at the end of the day, it’s your interpretation of things, and I wanted it to be solid fact, set in stone, I’m autistic and if anyone has a problem with that, they can eat my shorts. When I took my oldest to his assessment, the pediatric neuropsych politely looked at me and asked if I’d ever been assessed or considered it. I said that I hadn’t and she said, “hm,” and wrote things down, and it got the wheels turning. 

I talked to my therapist, my prescribing RN, and my primary. The former two were enthusiastic about giving me references, while my primary, who is “meh” at the best of times, remarked, “I haven’t seen anything in your behavior that would suggest autism to me, but I’ll see what I can do about that referral.” Which, okay, I’ve learned over the last 35+ years of living on this planet that if I appear too weird, I may as well exile myself from society at large and go live in a cave; and what’s more, doctors only see me when I’m coming in with the prepared “doctor” script: “hello, I am dealing with [problem] and would like [solution].” It’s rare that they see me unmasked and unscripted, so. Okay. 

(the doctor who has seen me unmasked and unscripted is my OB-GYN because he has performed two surgeries on me, one of which I followed by telling him–while high on fentanyl and ketamine–that I loved him)

The referral process was, to put it mildly, exhausting. I started it roughly two years ago, and it’s been a lot of back and forth with insurance companies, doctor’s offices, neuropsychiatry departments, more insurance companies, more doctor’s offices… about a month ago, someone from the neuropsychiatry office called to say that they didn’t accept my insurance any longer (which sounded fishy because it’s one of the largest insurance providers in the country) and that they’d put me in a file and I could call back if I ever changed insurances. I hung up, started to have a breakdown, and then she called back saying that she’d misread the file, and about a week later, I had my appointment scheduled for the day before Valentine’s Day.

And it almost didn’t happen. This past Friday and Saturday, I got hit with congestion and sinus pressure so bad that I thought I was going to lose my mind. I took a Covid test that I thought looked faintly positive (blame all my years trying to conceive for that one) and started to internally panic because rescheduling this assessment would be another enormous ordeal. Thankfully, though, subsequent tests came back blatantly negative, so I went ahead on Monday, even though I’d only gotten three hours of sleep and had a crushing headache.

I was apprehensive from early on, as I was told there would be a written portion to the assessment, and I had no idea what that would entail. The neuropsychiatrist mostly made me feel better, since she had a welcoming personality and was very straightforward about everything. She asked me questions about my history, my family’s history, my health, and then asked what I was looking for in the assessment. I explained that while I was fairly certain I was autistic, I wanted confirmation that no, I’m not just bad at being a person, that maybe there’s something else going on. She understood but also explained that even if she thought I was autistic, she likely couldn’t give me that specific diagnosis. As it turns out, insurance companies aren’t terribly keen on covering autism assessments once a person has turned eighteen (because, as we all know, the autism flees the body at midnight on the eighteenth birthday), so in order to get a proper assessment as an adult, you have to find a neuropsychiatrist that doesn’t take insurance and pay for it out of pocket, often to the tune of thousands of dollars. 

This is, of course, absolute horse shit. Which is the neuropsychiatrist’s assessment as well.

“What I can do,” she said, “is give you an idea of anything else that’s going on in your brain that might contribute to the things with which you struggle. We’ll do an I.Q. test, and then I’ll have some questionnaires for you, and while I won’t have the full report ready for another two to three weeks, I’ll try and at least give you my impressions before you leave today.”

Fair enough, I thought, and we began.

The I.Q. test was by far the longest portion of the assessment, and while I have my own thoughts on I.Q. tests as a whole (they have a racial and class bias and don’t really test inherent intelligence so much as opportunity), it was an interesting experience. We started with the verbal portion–memorizing lists of ~15+ words, naming as many animals or words that started with S as I could, defining words, explaining relationships between pairs of words. I knew I did well there; the neuropsychiatrist kept humming and saying, “oh wow, I don’t think I can spell that one,” which are generally good signs. 

Then we moved on to less verbal things, and I started to flop. She listed off a series of numbers for me to repeat back, and I think I did alright. Then she listed off a series of letters and numbers (like “192AQM7KD0217B”) and had me tell her how many numbers were in the sequence she’d given me. I had to read a page of the words “red blue green” in various orders; then I had to look at a page where each line was one of those colors and list the color given; and then I had to look at a third page that also had the words “red blue green” but each word was a different color from the word and I had to name the color and not the word. I had to look at patterns of increasing complexity and find the missing piece to each pattern. I had to look at shapes and choose the three puzzle pieces necessary to build the shape. I had to do complicated connect the dots puzzles and draw abstract shapes from memory. I had to look at a computer screen and press the spacebar whenever I saw a letter except the letter X.

(I didn’t do well at all on that one)

Once all of the I.Q. testing was done, I did the written portion, which was ultimately just self reporting on depression, anxiety, ADHD, and autism symptoms. And then the neuropsychiatrist tallied all of my scores and gave me her impressions.

The first impression she had was that she was comfortable diagnosing me with inattentive type ADHD. This basically means that while I don’t have the impulse control issues or hyperactivity associated with ADHD, I can’t focus on things to save my life–which honestly tracks with literally everything. I was explaining last night, for example, that while Kyle is an excellent DM for our D&D campaign, I cannot stay focused on just the game to save my life. I can’t focus on TV shows without having something to play with in my hands. I can’t do work without having something open in a second screen (which drives my managers bananas). My mind wanders frequently and far, and it always has, and the trappings of ADHD as a whole–struggles with time management, executive function, and rejection sensitive dysphoria–are things I’ve been familiar with for a very long time. 

It’s not surprising that I was never diagnosed with ADHD as a kid, as I grew up in the 90s, and ADHD wasn’t something they looked for in girls back then, especially if it lacked the hyperactivity and impulsivity component. I have zero impulsivity and like to sleep (and always have), but distractibility is my personal demon and has been since I was a kid. Still, I got decent enough grades that I managed to slip under that particular radar and stay in the honors and AP class setting throughout high school, so nobody really thought much of the doodles in the margins of my notebooks or the fact that I couldn’t finish homework to save my life. The real struggles were ones that people either chalked up to me being lazy/not math brained (read: failing out of trigonometry) or me just being shy and socially awkward. And neither of those are things associated with ADHD or really treatable with medication, so it didn’t ping the radars of any teachers, parents, or doctors.

(which I want to make abundantly clear: because my ADHD and NVLD, which I’ll talk about below, present differently from what people expect, I don’t blame anyone for not seeing them for what they were; I just accepted them as being personality deficits for the longest time because nobody knew better back then, but knowing better now is part of my own journey towards healing and living a better life)

I have the option to treat my ADHD with stimulants, but I’m holding off for numerous reasons, not least because right now, the gold standard medications for ADHD are very hard to find for reasons nobody can quite explain. I think I do eventually want to try and medicate, just to see what magical things I can accomplish when I can actually focus for more than thirteen and a half seconds a time, but I don’t want to start only to immediately start dealing with withdrawal. I’ve done that with my antidepressant, and it’s ugly. Instead, I’m mostly using this to inform my life. No, I can’t pay attention. A fae creature at one point said, “Can I have your attention?” and I stupidly gave it away and now it’s gone forever. Give me accommodations so that I can make your life better.

Outside of inattentive ADHD, the neuropsychiatrist said she felt comfortable diagnosing me with something that’s somewhat controversial because it’s not yet in the DSM (The Diagnostic and Statistical Manual of Mental Disorders, basically the guidebook for neuropsychiatry and psychology) but that she felt fit me rather well. It’s called Nonverbal Learning Disorder, and it basically does the opposite of what it says on the tin: people with NVLD are excellent at verbal expression and comprehension but really struggle with almost everything else about learning and existing, especially things in a visual/spatial context and things in a social context. People with NVLD tend to be very well written and well spoken but they also tend to be clumsy and not understand a lot of social cues or rules (like rules that might define professionalism in the workplace, for example). So for example, someone with NVLD might be able to write you the most beautiful letter you’ve ever read but then will get completely turned around trying to get to your house because they couldn’t read a map. They have extensive vocabularies but get tied up when it comes to puzzles and math. They express themselves beautifully but don’t read between the lines of a conversation.

NVLD is a disorder that’s come up a lot more frequently since Asperger’s Syndrome was removed as a potential diagnosis for people who have similar symptoms. It’s often an alternative to an autism diagnosis when neuropsychiatrists look at autism from a framework of always meaning a struggle with communication and excellence in visual and spatial (and often mathematical) fields. And at the same time, it’s often comorbid with ADHD, autism, and a whole host of other learning disorders. 

And I guess I’m of two minds about it. On the one hand, I do feel like the NVLD covers a LOT of my issues when it comes to schoolwork and work work. It’s something I wish I could have on a piece of paper and take back to my high school trigonometry teacher and shove it in his face, like, “SEE???” It makes my learning methods make sense, where I’m not necessarily bad at things that aren’t language, but where language is concerned, I utterly soar while with everything else, I stroll along at a normal pace. 

But I also don’t think either the ADHD diagnosis or the NVLD diagnosis cover everything. I still don’t have a lot in the way of talking about my sensory difficulties, how I can’t talk in loud restaurants or how wearing socks makes paying attention five thousand times harder. While I’m not as rigid as either of my sons (because heaven forbid our daily schedule look even slightly different for either of them), I do get tense when things change unexpectedly, more tense than you’d expect someone without specific neurodivergences to get. I think that I am autistic, and while the NVLD may be a more specific flavor of that autism, it’s autism just the same.

The thing was, too, that the neuropsychiatrist explicitly said that she wasn’t qualified to diagnose me with autism anyway, that she didn’t have the necessary training to recognize that, particularly in an adult. So whether or not I am autistic remains something of a mystery that I don’t really have an answer for, and that is, in no small part, because of the way health insurance functions in this country.

But I have some answers. Some labels. I can request specific accommodations that will help me in specific ways. I know that I’m not simply bad at being a person, just my brain is operating on a different system, and while that may be a disability (and it is, in a lot of ways), it also gives me something of better insight into who I am, why things in my life have happened the way they have, and what to expect going forward.

And that’s not the worst outcome by a long shot.

A Week

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The last time this happened was 2020, which is an ominous way to begin any sentence.

Isaac was not quite two and had come down with a “mystery respiratory virus” that required him to be on a nebulizer and antibiotics. In very little time, I also came down with this “mystery respiratory virus” that required me to also be on a nebulizer and antibiotics. Kyle worked from home while Isaac and I recuperated, and right when we were all feeling better, we got slammed with a stomach bug. On the plus side, said stomach bug got us used to ordering groceries through a website. On the minus side, well. Everything else.

Masks work, and I know this because our absurdly respiratory illness prone family hasn’t had a winter like this since mask use became popular right at the beginning of Covid. Even last year, when various illnesses started quietly spreading again, it was nothing like the years before, when Isaac and I, both of us with the lungs of a frail Victorian character, were knocked down for the count within days of the first sniffle.

But lo, here we are in 2023, and here Isaac and I are, both fighting the same respiratory bullshit. It’s hit Isaac harder than it’s hit me. Yesterday, we took him to urgent care and found that his O2 levels were at 88%, which is easily within ER range. PCR tests for both Covid and strains of the flu came back negative; it’s just a regular ass cold that turned into regular ass pneumonia. He’s on an albuterol nebulizer, like he used to be every year, and he’s on antibiotics, like he used to be on every year. He got a dose of steroids yesterday, which has the dual effect of (a) improving his breathing, and (b) making him really angry.

So that’s fun. And while we’re dealing with that, we’ve also been dealing with a cascade of other bullshit. In order:

Last Tuesday, Kyle brought our smaller car into the shop for an inspection sticker. It’s three months overdue. While he was there, the mechanic informed him that it failed because of some LCD light thing that they could technically fix, but they needed to order the part and it wouldn’t be in until Friday at the earliest. Kyle agreed to bring the car back on Friday.

So we did the whole week with only one car, which was easier than anticipated. All things considered, last week was pretty chill. Until Friday.

Friday during the day, I started feeling crappy, which was unfortunate because Kyle had to drop the smaller car off to be fixed. He did so while I stayed home, throat sore, feverish, exhausted. Every Friday is a half day for the twins, so I played referee for them in the afternoon while feeling like I’d been hit by a small bus; but in the evening, I had the chance to rest and took it with as much gusto as I could muster.

Friday evening, Kyle called the mechanic to check on the car, only to learn that oops, they hadn’t gotten  the part in by Friday after all. We couldn’t pick the car up that night, but that was probably for the best because I was in no state to be doing anything beyond sleeping. This particular virus–not Covid or the flu, mind–is brutal.

On Saturday, I didn’t get out of bed very much. I think it wound up being a couple of hours in the afternoon and then about 3-4 hours in the evening for D&D, during which I mistakenly asserted that I thought I was on the mend. 

Before D&D, Kyle sought to cook us breakfast for dinner on our stove, which once turned on, made a fancy “BZZT!” sound and displayed arcing blue light under the cooktop. Kyle immediately and correctly assessed this as what industry professionals call “not good” and turned off and unplugged the stove and flipped off the breaker going to it for good measure. We called an electrician that night, and said electrician mentioned he couldn’t come out right then but that he’d try and be out as soon as he could and, by the way, don’t use the stove until he can assess it, but it sounds like said stove was on the way out. So that’s neat.

Sunday was mostly chill except we had to figure out a way to feed three kids while also not having a stove, and two of those kids are autistic and very picky about food textures. Isaac was really starting to feel sick on Sunday, as was I, so he didn’t eat much, and I ended up having ice cream for dinner. No word about the stove.

Monday could’ve also been chill and restful, but the weather decided to throw everything it had at us–snow, sleet, ice, freezing rain, regular rain, the works–so the kids didn’t have school. Carrie was now starting to feel sick, so this was a surprisingly quiet snow day for us (usually our snow days are just pure chaos), but kids being home is always a bit harder than kids being in school. We heard a bit back from the electrician, who said that he couldn’t make it out in the storm but would come by first thing Tuesday.

So the electrician came first thing on Tuesday and, delightfully, the stove is still usable, minus one burner. We’re going to be replacing it sooner rather than later, but it’s not an emergency situation, so we can get through this bullshit week before replacing it, and that’s a great sign. Once the electrician had come and gone, and once we’d dropped Sammy off at school (since the twins were both feeling crappy), we went to pick up the smaller car, which passed inspection, and came home to call Isaac and my respective nurse lines, since neither of us were having a good time. Both nurse lines said that while this all sounded miserable, they have approximately six billion people in right now with the same symptoms so unless we were experiencing shortness of breath or whatever, we should just wait it out.

Remember that for later.

Tuesday night, Isaac was waking up with a bad cough fairly often, and Carrie ended up spiking a 103 fever around 1 a.m., so we were just. In a special place when we went to bed on Tuesday night. Very stressed out, and me still feeling like my lungs were gradually filling with sand (though I started feeling like I was on the mend late that night, so maybe the sand was leaving or something, I don’t know).

But anyway, Wednesday morning, Kyle called the pediatric nurse line again to say that hey, Isaac is still not doing great. They advised that he come in, since it was only a fifteen minute wait, and lo and behold, Isaac’s O2 levels were frighteningly low. Low enough that they said, after giving him baby steroids and starting his breathing treatment, that if neither of those things worked, he’d have to go to the ER by ambulance. Fortunately, both worked, and although Isaac wasn’t doing well by the time he left the urgent care, he’d improved slightly. After a brief hunt for antibiotics, he and Kyle came home, and we started the treatment phase, and now it’s today.

It’s honestly a weird week where the car being in the shop is a footnote. And where the stove not working is a minor inconvenience instead of a Major Issue. But here we are. I have no idea if I’m properly on the mend or not; if I am, it’s a slow climb. Isaac is definitely on the mend, but is sitting at the “wounded tiger” phase of being sick, by which I mean he’s lashing out at literally everyone for any given reason. This is a welcome change from the floppy listlessness of yesterday, but I’m looking forward to getting my smiley guy back.

And, well. To this week being over altogether, mostly.

Some Me Time

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All three kids are in school full time now.

Somewhere, some judgmental person is like “how can you be so happy about your babies being out of the house all day???” but listen. I have spent the last eight years with someone either on me or in my uterus nonstop. Today, I got to go on a lunch date with my husband without finding someone to babysit for us. When I had to send emails this afternoon (because being a mom of three school-aged children means doing a lot of emailing), I didn’t have to worry that someone was going to get bored with whatever I’d thrown at them to distract them. I could just email and reply, email and reply. I was so fast.

So now I’m figuring out what to do with these hours between 8:00 a.m. and 3:00 p.m. when I used to have to spend 110% of my time making sure Isaac wasn’t bungee jumping from the top of the stairs (that still is a focus between 4:30 p.m. and 7:30 p.m., for the record), and a lot of it boils down to actually taking care of myself.

Anyone who’s raised twins can tell you that it’s a LOT of work. You essentially have to be in two places at once at all times, even more as they get older and more capable of causing problems on purpose (as they gleefully inform me they’re doing several times a day). Your own needs don’t just take a backseat; they get strapped to the rear bumper with some duct tape and you pray they won’t fall off when you hit a particularly gnarly pothole. And when it’s twins, it’s not a societal thing telling you that mom should give up taking care of herself while dad does whatever. If you’ve got a decent marriage, both parents are struggling and dragging themselves across the finish line at the end of every day, wondering how they survived.

Actually me at the end of any given day.

And then add autism into the mix, with its superpowers and drawbacks, and basically, I’m amazed that I made it to the twins’ first full day of school without actually being committed to a mental institution. 

(note that I did come close, but it was technically a partial hospitalization and it was under extenuating circumstances, i.e., a literal plague, so I still consider it a victory)

This week, self care mostly just looks like having very relaxing days. I was in sleep therapy for a while this spring and summer, and I’m pretty sure my sleep therapist would shit a blue kitten to see how I’m spending this first week with no kids at home. But that would be her problem because I’m sleeping not because I feel like I need to but because I can and I want to. I like sleeping, and I like sleeping even more when I know that I don’t have to worry about my kids while I’m sleeping.

After this week, though, it’s time to really buckle down on the actual self care. Not the forever naps or the eating bonbons or wearing sheet masks type of self care, but actually pulling my body back from whatever hellhole it’s been in for the past two years.

I’d written back in March, when I had time to write here semi-regularly, that I was working on getting a CPAP, and I have gotten one. And I’ve noticed a marked difference in my before and after life, though I didn’t realize the difference until one day, when I didn’t get enough sleep and suddenly, I felt cranky. That didn’t happen before because I was just in this permanent state of exhaustion that never ended, so I didn’t ever feel cranky. I just felt normal. 

But then the other day, I didn’t get as much sleep as I had been and had to function on this insignificant amount of time. And I was cranky. I was so upset about everything and I was like ??? what is going on? Until I realized that oh, I was acting like I hadn’t slept because I hadn’t, and boy was that weird. I was so used to getting such bad sleep for so long (roughly 70%-80% of my nights were spent not breathing) that I didn’t know what being sleep deprived felt like anymore because it was just my normal. 

So I’ve taken care of the sleep aspect, at least, but a lot of me is still tired. This is partly because I’m still recovering from however many years it’s been that I’ve had sleep apnea and been getting zero sleep. This is also partly because, increasingly, I’ve been dealing with absurd amounts of bizarre pain.

I say “bizarre” because it’s pain that I can’t really explain with anything simple. I can explain my knees and hips and ankles hurting because I am fat. That makes sense to me. I cannot explain why my toe knuckles and finger knuckles hurt pretty much all the time. As far as I know, I haven’t been running around all night like a gorilla, balancing on my fingers, or learning to dance en pointe. My fingers and toes have hurt for the last two years off and on and it’s just very, very weird.

When I spoke to my primary care doctor about it (not intending to, by the way; I went in to speak with her about a completely different matter, and Kyle said, “hey, while you’re there, why don’t you talk to her about your fingers and toes hurting?”), she basically diagnosed me with “being fat” and spent the rest of the appointment meticulously reading through the list of ingredients on the Dr. Pepper I confessed to drinking. Which… yeah, pretty par for the course when you go to the doctor as a fat person. And, mind, I’m not saying that I’m either healthy or not fat; quite the opposite, really, and I know the steps I need to take to improve my situation. 

But.

Anyway, my doctor thankfully also ordered bloodwork to check for autoimmune issues, because when you have the symptoms I have (nonsensical joint pain, skin that gets hot when it’s in the same universe as a day over 65 degrees, fatigue even when you’re getting decent sleep), it tends to indicate something autoimmune going on. One of the results came back elevated in a range that, from what I’m reading, tends to be consistent with autoimmune situations, so that’s exciting.

I do not want to have an autoimmune condition, I should add. They all sound wretched. Bare minimum, they sound like a lifetime of pain and medication to do away with the pain that has awful side effects of its own. But I’d also like to know what the fuck is up with my body already hurting. Like my body already hurts; I don’t need an autoimmune diagnosis to make that a thing. 

(as to why I never brought it up before, quite simply it’s because between the pandemic and raising three kids with varied special needs, my own needs were, as I said before, strapped to the back bumper with duct tape)

I have an appointment with a rheumatologist in late October, and I really hope that she isn’t dismissive, that she says, “yeah, no, drinking soda isn’t good and you should exercise, but neither of those things should cause your knuckles to hurt like this.” 

So in addition to alllllll of that, I’m looking to start exercising properly, now that I actually have free hours during the day. I don’t know when I’ll be doing that exercise, but I figure ~30 minutes a day, 4-5 days a week of moderate cardio should do the trick of getting my heart pumping and my body saying, “whoa, hey, we’re taking care of ourselves now! Neat!” We have a membership at a local community center that I plan to use for that purpose, and that’s something I’ll be doing starting next week.

And in between all of this, I’m also getting my tubes tied. With all the new bullshit laws happening across the country (side note: if you agree with any of those laws, you and I are not going to get along) and with any future children I’d want probably coming from a freezer at this point, tubal ligation just seems like a good option to me. And that is happening on October 3, and I am pretty jazzed about it. Hilariously jazzed, too, considering literally everything I went through to have the kids I do have, but honestly, having power over my own body is a good feeling and one I want to maintain as much as I can, all things considered.

(those things being everything I talked about above)

And I’ve got plans to clean out a whole bunch of stuff from our house and I’ve got plans to write again and I’ve got plans to take my camera out places and and and 

Basically, I do, in fact, miss my kids somewhat during the day… but I’ve missed myself a whole lot more.

A LOT TO TALK ABOUT

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Hi, so life is busy.

Well, no. It’s busy but it’s also not. It’s fallen into this nice routine but I’m tired all the time, which is unpleasant and probably the fault of the nerve medication I’ve been on for a year at this point (more on that in a minute), but it also means that by the time I reach the end of the day, I’m a noodle who isn’t very good at writing things. And I have so much to update on and so much to talk about but again: noodle, living in a constant state of no bones.

So life. 

The kids have been in school in person for coming up on three months now, and it’s mostly been a pleasant time. We’ve had… mm, I want to say three Covid scares? Two that were everyone and one that was just Carrie. It’s a weird thing because I don’t like to send my kids into school sick anyway, but now in the time of Covid, you can’t just not send them to school sick, you also need to get them tested. And I am okay with that, just so we’re clear. It’s a pandemic, kids have only just started to get vaccinated, and I’d rather know one way or the other. 

BUT it does take a day home with a head cold to five days home because we couldn’t get in to get tested until 12 on Wednesday so the results aren’t back until 10 on Friday, so we’ve missed the last three days of the week plus the weekend, and by that point, all three children have gone completely feral and are jumping from couch to couch to couch to couch while scream singing “Grace Kelly” by MIKA.

Thankfully, our school has recently implemented a “stay and test” option for people who are just close contacts, but that does nothing if your kid has the vague “maybe it’s a cold or hay fever or Covid?” symptoms, so we just check everyone’s temperature in the morning and get really caught up in the mitigating circumstances of each and every symptom (e.g., our kids are hot sleepers, so if one seems warm but they were in bed all night, we wait another hour after they get up before doing a temperature check). 

Kyle and I are both triple vaccinated, so even with ominously named variants popping up all over the globe (seriously, if they’d just gone with Omicron from the start, I feel like this entire pandemic would’ve been taken a lot more seriously. Like I’m not saying that Covid isn’t a threatening name except it very much is not a threatening name), we’ve both felt comfortable and safe enough to go to the movies again and go out to dinner again and mostly resume our normal lives, sometimes with masks and sometimes not. And despite the handful of Covid cases in our schools, both of us feel pretty safe about our kids being back in person (and all three have IEPs, so even if schools went remote again, they’d end up taking the in-person option anyway, whee). 

Being back to school in person has benefitted Sam so very much. We weren’t sure how he’d take to it, since it was a full year away, but the phrase “like a fish to water” comes to mind. He picked up right where he left off with his best friend Hunter, and he’s made new friends (Declan and Eamon) in his class. His teacher has nothing but good things to say about him, even taking into account his reluctance to put away his scissors sometimes and his adorable motormouth tendencies. He comes home constantly with stories about the games he played at recess (apparently, Among Us is popular with the kids these days, which… okay, cool, it’s literally just Mafia, but cool) and the time he spent with his friends, which is enough to make my heart feel warm and mushy, but THEN you add in that he got the highest scores on their classroom testing in math and ELA and I’m just. Beyond proud. Is there a way to be beyond proud, because that’s me. I’m beyond proud.

I also feel a weird sense of pride because, as it turns out, Sam is also autistic.

Roughly around this time last year, his therapists asked us if we’d ever had him tested, which we hadn’t. Sam and Isaac are both similar in that, while they’re both definitely autistic, they’re also both really social kids. They like to make friends and be involved with other people, but where Sam was in daycare from the time he was a year old, Isaac was home with me. Isaac was also notably delayed from the start because he was a preemie, whereas Sam would’ve just stayed in for the next ten years if the doctors had let him. 

Anyway, we didn’t ever have Sam evaluated for autism because he’s such a social kid, and he learned from very early on that socializing means eye contact and it means language and it means doing things that autistic children typically aren’t seen doing. He had his pickiness sometimes and his need for routine, but we figured that was just typical toddler stuff. 

And then the pandemic.

And a fun thing with neurodivergence is that when those of us who fall under that umbrella get stressed, we don’t mask as well. Our divergences become more and more apparent, and as a result, people start to notice. 

The pandemic was stressful for everyone, and it was particularly stressful for Sam, who had his routine and life upended overnight and never quite found his footing again. Early on, we had him seen by one therapist who recognized that he has ADHD (both inattentive and hyperactive type, because we like to cover all bases here), and once he started receiving in-person therapy, his new therapists agreed with that and said that he also seemed to be autistic.

SO. 

It took a whole goddamn year to get him an evaluation because everything is absurdly backlogged and you can’t do an autism evaluation virtually. We went for the first available slot in Boston, and an hour and a half later, the doctor said, “Yep, autistic” and sent us on our merry way with a bunch of emails and links and information and suggestions about therapies and what-have-you. 

And, real talk, Sam is excelling so much in so many ways that I’m not super interested in pursuing therapy unless he asks for it. Talk therapy, sure, because I think that helps a lot with a lot of things. But ABA (gag)? Anything besides the OT he already gets? Nah. I think he’s doing pretty well on his own, and the diagnosis mostly just gives us a tool and a shield that we can use to say, “okay, because of this diagnosis, you cannot deny him services.” 

(not that our school district WOULD HAVE denied him services, but just in case)

Anyway, he’s doing SO well that we’re actually shifting his services to an “as needed” basis, meaning that he’ll still have the help if/when he needs it, but he’s transitioned so smoothly and is doing so well that we don’t need to force it on him. And my god, he’s happy again. Last year, it was like a cloud over him, but this year, the sun’s back and it’s so beautiful.

My health is also on the docket of things to talk about. A year ago this weekend, I was in the ER with nerve pain so bad that I couldn’t do anything but scream and shake, and in a logical world, they would’ve pushed me through getting an MRI and surgery ASAP because nerve pain that bad is a major red flag for nerve injuries that could become permanent damage.

But.

I got sent home with meds, celebrated Christmas and New Year’s, then saw a doctor in January. The doctor said it sounded like a herniated disc but I’d need an MRI to be sure, but the next available MRI appointment wasn’t until March. I would’ve taken that appointment, but it fell on the same day our insurance rolled over from one to another (not that the new insurance covered the MRI anyway?), so the MRI got pushed out to late March. Then I saw the doctor again in April, and he gave me the option of either getting injections to ease the pain while the nerve healed or having surgery. I said I wanted surgery, so I got to see ANOTHER doctor in May, and we scheduled the surgery for July.

So it’s already been eight months with this injury and things not really getting better, right? And then Kyle’s company laid off his entire department literally two weeks before my surgery and we had no insurance, so I had to postpone the surgery to August. And THEN we were in this kind of song and dance with MassHealth, where nobody was really sure if we’d be able to stay on it once Kyle received his unemployment payments (note: we still have not received unemployment payments), so we postponed the surgery indefinitely until Kyle got a new job and we were on that new insurance.

September rolls around, and Kyle gets his new job and good new insurance, some of the best we’ve ever had. I call to make a new surgery appointment, but first, I need a new MRI because it’s been, at this point, six entire months so who knows what’s going on in there? And I pay roughly the same for the new MRI that I did for the one with the shitty insurance, but whatever, right?

Within 24 hours, the doctor calls me back and says, “hey, you have zero herniation left. I’d do surgery on you, but it would be pointless because there’s nothing to remove. All you have to do is just wait for the nerve to no longer be inflamed.”

To get a clearer picture, I ask, “But what about the fact that I cannot feel anything on the inside of my left thigh and also at least two and possibly three of the toes on my left foot take a good thirty seconds more to get the message that I want to move them than the rest of my foot?”

“Oh, well, those are probably permanent, but in 90% of cases, the pain goes away completely within a year of pressure coming off the nerve.”

SO LET ME GET ALL OF THIS STRAIGHT. Because of insurance issues, I had to wait and wait and wait and wait on my surgery to the point where I’ve now been left with permanent damage and pain that has an okay chance of disappearing completely but nobody is really sure when that will happen?

I’m on this nerve medication, gabapentin, that makes the world completely fuzzy. I’ve been on it for a  year. You’re not supposed to be on it more than a few weeks because it makes you sleepy and messes with your memory (not permanently, thankfully, just while you’re on it). I don’t know when I can come off it because I don’t know when my herniation stopped pressing on the nerve because I had to keep putting off the surgery again and again and again.

And like. I don’t want to get into it about universal healthcare, but I’m pretty sure that my waiting would’ve been cut in half if I hadn’t had to change health insurance five times in the last year.

Whatever. I have an appointment on December 13 to talk to the surgeon and discuss my options. I want to see if I can get hydrotherapy of some sort to try and take some pressure off things, and I really just need to find a decent and quiet gym and go there in off hours to walk and slowly bring myself to a healthier level of activity. I’ve been in so much pain the last year (and still am sometimes) that activity feels daunting, but I need it to heal, and I need to find a way to do it that won’t scare me away. 

Meanwhile, I’m just keeping myself in a floating state of planning mode. Planning Halloween (Sam was a ninja and the twins were Spider-Man and Ghost Spider). Planning my birthday and a trip with two of my best friends to Cape Cod in the off season (was delightful but also very cold). Planning Christmas. Already thinking ahead to the twins’ birthday. Planning road trips. Planning planning planning. 

Planning that extends kind of far out as well, but only kind of. 

Kyle’s new company has some really great insurance, you see, and through it, we were able to cover PGS for our remaining embryos from the cycle that gave us Isaac and Carrie. Unbelievably, six of the seven embryos were healthy and there are exactly three boys and three girls.

Which brings us to the age old question of WTF are we going to do with all of these frozen babies?

I want one more. Not twins, please god not twins. I love the twins so much, and about 50% of the time, I love that they are twins (the other 50%, they are beating the ever loving shit out of each other for reasons that I do not understand, so I’m like, why couldn’t you be born one at a time so we’d have some buffer space?), but I physically could not do twins again. But I’d love one more girl as a coda.

BUT not for a while yet, if we did. Kyle isn’t fully onboard, which is fair because the twins are a LOT right now, and if someone dropped a baby in my lap right at this second, I’d be like, “WHY DO YOU HATE ME SO MUCH????” because I cannot infant right now. If we went ahead with one last transfer, it would be in 2023, no sooner. Too much is going on in 2022, and my health isn’t where it needs to be.

But it’s on the table now, and we didn’t know if it was on the table before. It was a daydream and now it feels like it could happen? I don’t know if it actually will, but it’s there. One last girl. 

Maybe.

Or maybe a puppy instead. I don’t know.

Regularly Scheduled

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There’s something to be said for normalcy in one’s life.

I don’t push myself or my kids to conform to society’s ideas of normality, mind. I’m gloriously weird, my kids are gloriously weird, our family life doesn’t reflect what a lot of people would consider “normal,” but all of that said, we have our own beat of normal that we’ve been missing for a long time. It was missing for a variety of reasons–summer vacation, Covid, Kyle being out of work–but at long last, I can say with some confidence that it’s starting to come back. 

For one thing, all three kids are in school now, finally. The twins started back in the spring, because they aged out of early intervention services, so it was less of a huge transition for them. Other kids in their preK class started the school year with tears and clinginess, but the twins just marched right on down to their classroom like they owned the place. Even in the spring, school was just so good for them overall. Carrie went from babbling a lot to actually using words more often than not (which we expected of her–she loves to use words and speak in complete sentences when she knows how, and school helped her refocus those abilities somewhat), and Isaac has done the same (which is huge for him–he actually answers questions without being fed options now, and that’s amazing) (and an addendum: if he just didn’t want to communicate verbally or if he wasn’t comfortable doing so, I wouldn’t push it on him, but he’s made it more than apparent that he LOVES to talk with us and communicate verbally, so I’m happy to encourage it). They’ve made friends and are comfortable with the routine they have at school, and I love to see it. They’re also so much calmer when their days are in this kind of routine, which I love to see for other reasons (like my own sanity).

And Sam started back at school, which is fantastic. Yes, Covid is still raging, but our schools have fantastic protocols in place, and after the stress of last year and knowing that Sam has ADHD and is likely autistic as well, I wanted him to be in a place where he could receive the accommodations he needs rather than struggling with me at home. His friends are all in school, and that has been huge for him–he’s not alone anymore, and I can see just from that how much happier he is. And that alone does my heart a world of good.

He’s receiving special ed services this year, too (which means I have three IEPs to keep track of, and as any parent of a special ed student can tell you, that is basically a full time job except you don’t get dollars for it), and that’s been great. His accommodations aren’t super complex, like he doesn’t require a constant aide at his side or anything, but he does have accommodations: he gets to work with a special ed instructor every day of the week and on his English/Language Arts lessons, and he’s got the special ed instructor around daily to make sure that he’s doing well. His teacher is also aware of his accommodations and will let him step out into the special ed classroom if he’s getting too overwhelmed by things, which will be good for keeping him from melting down in class. 

I love his school’s philosophy on so many things. Their view of writing is that kids should be able to write about whatever they want in order to develop their writing skills and narrative voice, which I hope helps Sam as much during the school year as it helped him over the summer (when he would write five chapter long stories about the cardboard spaceship he built, and those stories were and are wonderful). They’re sensitive to each kid’s needs, and while that shouldn’t be a “wow this makes them stand apart from the crowd” thing, it kind of is, and I’m glad they’re standing apart from the crowd like this instead of in a bad way. 

So the kids are back in school, and that routine is getting back to something like normal. It means that mornings are just me and Kyle, which hasn’t been the case since 2013, and that’s pretty wonderful in and of itself. The house is quiet except for the sound of both of us typing and someone quietly talking about the weather on TV, and maybe Kyle on a work call…

…which, oh yes. Kyle got a job.

It’s a fun sort of story. He’d interviewed with this company last year at the suggestion of one of his old managers who currently works there. They didn’t have a position for him then, but they promised to keep him in mind if anything else came up. Nothing did in the fall, and Kyle started his most recent job then only to be laid off in June. And it was the whole song and dance of applying to companies, having companies say, “mmm, thanks but no thanks” (anyone who’s looked for a job in the last decade or so, and especially the last two years, can attest to that particular Broadway number) for a couple of months, and then he called this company back. And wouldn’t you know, they had a position for him. 

It’s a good position. Without getting into details, it’s an incredibly comfortable salary and benefits situation, and they sweetened the deal in all sorts of ways that are really blowing my mind. So far, Kyle is loving the people he works with and the company’s philosophy as well, and I really REALLY hope this good fortune settles in and sticks with us a while. We just have to get through the next five-ish days before his first paycheck comes in and then we should finally, FINALLY be okay in the longer term. 

Having him working again is really nice. It just gives us a schedule during the week, real weekends instead of every day blurring together into an endless hellscape. It feels like life is just… life and not life with an asterisk about it being weird. 

And I’m loving it. 

May be.

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Have you ever had a month where everything happened so much and you didn’t have any time to really process one thing before the next was happening because that was May in our house. 

It happens roughly this way every year. From the twins’ birthday in March to the Fourth of July, I’m basically running around like a chicken with my head cut off–baking cakes, wrapping presents, organizing mini parties (because aside from the twins’ first birthday, they haven’t really been in a place to have a real party). Even in typical years, May is the heaviest chunk of this insanity, with Sam’s birthday, Mother’s Day, and Kyle and my anniversary squeezing into the mix. 

But this year is not a typical year, and unlike last year, this does NOT mean that things got quicker and easier. 

The first chunk of the month was sort of easy. It was mostly just organizing for Sam’s birthday, his seventh birthday, which feels like a monumental year. We’d hoped that by this time, he’d have been back in school and able to have a birthday party–a real party–but 2020’s claws aren’t fully extracted, so we had to make smaller plans, plans that involved a Minecraft cake (of which I am VERY proud), a trip to the Museum of Science, and trick birthday candles.

And admittedly, that’s a far cry better than last year. Last year, I scrambled to pull something slightly special together, and it was all taking place roughly in and around our house. This year, we could at least go somewhere and do something. We could go visit my parents, which we’d BARELY started doing last year. And that made a HUGE difference. 

He’s a happy seven-year-old, missing one of his front teeth, obsessed with Pokemon and Beyblade and Minecraft and science. Bouncing around the house at 9000 miles an hour when he gets excited and then flopping down on the couch talking about how exhausted he is. Begging us to have a Beyblade battle with him literally every second of every day or, failing that, to play Pokemon with him (this currently involves him telling us what to say about our Pokemon and us saying it). 

He is also, it’s turning out, not a neurotypical kid. This isn’t surprising in the least, but all of the testing that Sam has had over the last several months in preparation for him returning to public school in the fall has kind of confirmed what those of us close to him have suspected for a while. At the very least, he falls pretty solidly on the “yes” side of the ADHD scale (as in “yes this kid has ADHD”), and everyone who’s evaluated him is pretty solidly convinced that he’s autistic as well, which is giving me a lot of emotions. 

On the one hand, I’m thrilled. I’m autistic. Isaac is autistic. We’re a neurodiverse family, and that’s how it’s been from the beginning. It means that on some level, Sam’s brain and my brain work the same way, and that is just SUCH a relief as a mom, knowing that your brain and your kid’s brain are on the same wavelength. It makes sort of “hacking” those wavelengths a little easier, because even though the same things that worked for you almost certainly will not work for your kid, you at least have a common starting ground, and that’s an amazing feeling. Instead of watching your kid melt down and not knowing what to do about it, you can recognize “okay, the TV is too loud, he’s hungry and tired, and his blanket needs to be washed so it’s less scratchy.” And you can even find ways to motivate schoolwork, if you’re an A+ student (which I am. Sometimes.). 

But on the other hand, I’m frustrated at the narrowness of diagnostic criteria for younger kids. When Sam was much younger, everyone who met him said that he couldn’t possibly be autistic. He forced eye contact with everyone, literally took people’s faces in his hands and made them look at him. He’s always been a little comic and so talkative. In daycare and even up through kindergarten, he’s always been a social butterfly who makes so many friends. He’s beyond clever and, to my great envy, has none of the social signs that people look for when diagnosing autism… so he went completely undiagnosed despite the ways he melts down during times of transition and despite his sensory issues with food and despite how he shuts down when something seems too hard for him. 

ADHD and autism look really similar sometimes. 

I’m a little relieved that he didn’t get diagnosed earlier because it spared us a lot of stress with therapies that might not have benefitted him in the long run, but I’m also annoyed because now, we have to go through the whole referral process, which can take up to 18 months (I’ve filled out paperwork for a place that could theoretically offer him an appointment in July–more on that being a silly idea coming up later–but they haven’t gotten back to me since I sent it). He has an IEP now, but it’s there without the legal protections in place because he doesn’t have that diagnosis, and that frustrates me. 

So it’s a whole thing. I still have more paperwork to fill out for him to get back to school in the fall, and it’s a lot. But having these pieces to the puzzle has really helped. 

Sam turned 7. We set up his IEP. I went to the eye doctor for the first time in eight years (ah, American health insurance). And then, since Kyle and I are both fully vaccinated and it has been a YEAR, we hopped on a plane and flew down to Florida for our tenth wedding anniversary.

We went to Disney for our honeymoon, and I can go on a whole rant about how awful a lot of their business practices are, but I also tend to light up like Christmas at the idea of being there, and after this trip, Kyle does as well. It was just the two of us, no kids or anyone else. We went at our own pace–made lightsabers on the first morning, ate around the world at Epcot the second day (I love Epcot festivals, they are magical), drove down to Miami-ish to spend time with my bestie Sherrie on the third day. 

There was no real pressure. We did what we wanted to do when we wanted to do it. No worries about someone getting too tired or not wanting to eat the food at a certain restaurant. No rushing to make this Fast Pass time or that restaurant reservation. Lots of crowds, to be sure, but without the stress we’ve gotten used to on these trips. 

And it was just. Nice. Nice and earned. We’d been burning out pretty quickly, thanks in large part to my sciatica having us running on empty since November, and while this didn’t refill our tanks by any stretch of the imagination, it was VERY nice to be able to just be with each other, relaxing and having a good time. Kyle enjoyed himself so much that he actually took pictures (I’m the one with the camera most of the time) and has been talking about what we’ll do the next time we’re there, and I’m just happy. Very happy to have had that time with him. 

And now we’re back and 30 days out from my spine surgery. I’d be lying if I said I wasn’t genuinely really nervous about the surgery. It’s not a complicated procedure like a fusion or fixing scoliosis; it’s just removing the herniated disc material and letting my sciatic nerve heal some, but because of my weight (let me tell you, a pandemic and a spinal injury are really not good when you’re trying to get healthier), there’s a possibility they won’t be able to reach my spine. And there’s always a possibility that it won’t work, that I’ll just leave the hospital in more pain than I had when I went in, and that scares me. 

The recovery period scares me, too. Basically from July 1 through October 1, I won’t be on my A-game, which is annoying because so much is happening in that timeframe that I need to be present for: Sam starting school again, the twins starting school in the fall, Halloween prep, picture day… it’s all stuff that I love doing about parenting, and it’s all stuff I’m either going to have to be very lazy about or else entrust to somebody else, which I HATE doing because delegating is scary because what if it’s not exactly the way I would’ve done it but HNNNGH.

I need this. I desperately need this surgery and the recovery time, but I am stressing so much about getting through the recovery. Kyle suggested (per his therapist) that I focus on something after the surgery that we’ve got planned (which is nothing right now because I’m not sure if any of our usual fall activities are even happening this year–I think they are, but who knows?), and I agree with that, but it’s so hard to make my brain see past the recovery all the way to what comes after when so much comes in between. 

I think I may need another vacation. 

Senioritis

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Do you ever get in one of those foul foul moods? Or not really a foul mood, but a mood where everything you want to talk about comes out tinged with complaining? And you don’t want to be that person that nobody wants to talk to or about because they’re always complaining, but it’s just. There.

I feel like that’s me right now, so close to the end of this pandemic, hope being dangled in front of me, but still far enough away that something or someone could ruin it, and maybe because things feel mostly good, the bad is amplified somewhat? I don’t know.

I try to do the gratitude thing, but that feels disingenuous, like yeah, I’m grateful for a LOT, but that doesn’t make the bad feelings go away any. And I want to be honest in my writing, but I also don’t want everyone to be like “ugh, Abby’s complaining again, bye.” Because I know things aren’t that bad, BUT.

Well anyway.

Hi. 

I guess I can talk about the angst first and then end on a good, or better, note. The angst stems 100% from my sciatica and how it makes me feel so… limited. Because I am limited. I don’t know if it’s fear of pain or actual pain, but I’m constantly finding myself incapable of doing things that used to be easy for me, like cleaning the house or taking a walk or standing in the kitchen cooking dinner for the kids. It’s not the worst thing ever, like my pain isn’t back at Thanksgiving levels, but I think on some level, every time I feel a twinge, I worry that it’s going back there, so I limit myself.

I’m fortunate enough to have a really understanding husband who would rather I limit myself now, before it gets bad enough that I like. Need adult diapers at not even 40 years old. But it’s still frustrating. I don’t know how to explain it, really. It’s like one day, you’re able to do things, and then the next, you find yourself stuck for an indeterminate amount of time. You forget that there’s an issue because you’re feeling better, so you start picking up stuff off the floor, but then two minutes later, you have to sit with your feet up for another ten minutes so that you stop hurting. It is SO dumb.

And it’s so easy to say “well, do two minutes at a time!” but it’s somewhat Sisyphusean or worse. You do what you can but then you’re out of commission because you pushed yourself. 

So that’s kind of colored my last month or so, and it’s annoying, and I hate it. I’m going in on Thursday to get an MRI and find out exactly what is causing this issue and if it’s something I can fix through targeted physical therapy or if it’s something I need surgery for (though the fact that it’s lasted as long as it has makes me think that probably we’re past the PT working point). Insurance companies like to go for minimally invasive steps first, but I’m like… I’m clearly having issues here that are more in-depth than just oopsie, threw out my back. 

But yeah. Background radiation of my life, etc.

The twins turned three about a week ago, and it was a fine time. They were happy with the day, even if it kind of went by in a rush (one that I’m not getting into, but suffice it to say that my annoyance at being unable to do stuff definitely made things less fun than they otherwise would have been). 

I ended up turning their day into a much bigger Thing than it normally would have been (for Sam’s third birthday, for instance, we just went to a museum and had cupcakes) because their last birthday ended up being a flop because Covid, and I guess I wanted this year to be something of an improvement. And I think it was, but man. Twin birthdays take a lot out of you. You do something that seems like the bare minimum, except because you’re doing it for two humans instead of one, it actually feels like you’re overdoing it by a lot. 

But again: they’re happy. Which is what really matters.

Happier news without the asterisk, they started school last week! Early Intervention ends when your kid turns three, so they transferred to our town’s public preschool the day after their birthday, and so far, they’re loving it. We’ve yet to have one of those separation anxiety crying days, not even on the first day (maybe them being in the NICU desensitized them to going away from us for a while), and every afternoon, they come home talking about how they had “so much fun!” Their crafts are starting to cover the fridge and walls, and I’m just relieved that they’re able to do the art projects they love so much without me picking up after them. 

It’s surreal having kids going to school in person. I’m a little worried because Massachusetts has been trending upwards in terms of cases, but at the same time, the school of ~600 people (kids, teachers, staff, etc.) has only seen about 12 cases in the entire year, so whatever they’re doing seems to be working. I wonder if it will still work once the schools are forced to go full time in person in April (which I do NOT agree with–it’s two months, y’all, just take the L and prep for next year), but the kids are so good with their masks that at least I feel like they’re protected on some level.

I have no idea what their days at school look like. I know they’re getting speech therapy, physical therapy, and occupational therapy, but I have no idea what the schedule is, anything like that. And I’ll be real: it feels SO GOOD to not know. SO GOOD. Because it means that I’m not the one coordinating it! I don’t have to shepherd them into a Zoom call that they won’t pay attention to, I don’t have to freak out because I forgot a meeting, I just get to use the mornings to do Sam’s homeschooling and then let them sleep the afternoons away. 

It’s very nice.

Sam, meanwhile, is in the process of being evaluated by the school to see how he’s done this year and what accommodations he’d need in the next school year, if any. His therapists across the board have suspected that he’s not neurotypical, but waitlists to get a diagnosis from a doctor are a year long at least because of Covid, so we’re trying to push things through with the school first and see what they say. Last week, he spent three days doing academic testing, which went very well. His tester remarked that he’s clearly VERY smart, and that he does seem to have some executive dysfunction issues, but that he’s also good at getting himself back on track. 

(at least when I’m not around, but I figured that would be the case, because he’s comfortable enough around me to melt down completely and know that I’ll never stop loving him or being blown away by him)

We’re next going to talk with the school psychologist, just to see where he is there, and hopefully, we’ll have a game plan in the next couple of weeks. I’m committed to sending him back in the fall, partly because I’m getting to the academic point where I’m a little out of my depth (he’s already learning area and perimeter, and algebra can’t be far behind), partly because he needs to be with his friends again, and partly because we both miss me just being his mom, not his mom and his teacher. It’ll take the pressure off both of us for him to be back in public school, and I’d be surprised if it weren’t safer for him to do so by fall.

And I think he’s in a good place to go back. It usually takes some cajoling, but he’s been keeping up with his schoolwork, and he’s on track with other first graders in that regard. I’m excited to see what second grade brings for him, and what life with the kids out of the house for a couple of hours a day brings for me. 

(I just realized that I haven’t been home alone with nobody else in… probably six years? Or so? Maybe four? It’s hard to say)

Meanwhile, vaccines are rolling along in our house. I’ve got asthma and am obese, so I got to be the first in the house to get a pair of Pfizer jabs, the last one on Saturday. Side effects were minimal–I was REALLY tired on Sunday (slept for ~15 hours because my husband is wonderful and hung out with the kids on his own all day) and then had pretty gnarly body aches when I went to bed last night, but things have since calmed down. No fever, no chills, certainly nothing at all compared to actual Covid. 

I’m hanging out on my phone a lot to try and get my mom an appointment for her vaccines, too, since she’s part of the group whose eligibility just opened up today. This remains a tricky thing to do, but I’ve been keeping up with vaccine news, and considering how manufacturers are ramping up production, I feel like supply will overtake demand in the next couple of months, and how good will that feel? And with any luck, that will correspond with cases going down, with hospitalizations going down, with deaths disappearing entirely. 

It’s just that end of the school year feeling, that time when summer is RIGHT THERE, IT’S RIGHT THERE GUYS, and you just. Don’t care about classes, you don’t care about homework, summer is RIGHT THERE (and GOD, so much worse when you’re a senior in high school or college, you’re just like THIS IS ALMOST OVER, HOW AND WHY SHOULD I CARE??). You can’t think about your finals or about anything but summer being RIGHT. THERE. And YET, despite that feeling, it’s important to still be careful. Still wear a mask, still be safe, still make good choices, because unlike skipping homework during senior year, skipping out on responsibilities as the pandemic starts to cool down will genuinely have consequences (see: Brazil), consequences that can be deadly.

In other words: take care of yourselves, and each other.

Until next time…

Parting Clouds

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

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

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

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

And I’m ready.

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

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

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

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

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

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

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

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

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

For the first time in forever…

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

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

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

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

SO. 

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

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

Ob-La-Di, Ob-La-Da

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

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

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

Life goes on. 

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

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

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

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

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

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

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

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

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

Let alone diving into TWO.

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

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

It’s a lot. But I feel ready.

And life goes on.

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

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

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

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

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

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

SO.

Life goes on.

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

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

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

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

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

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

Until then, though, life goes on.

Check it off

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

But still. 

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

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

Like all of 2020.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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