family

Once Upon a Time in New York City

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Most of the time, I’d at least want to put some effort into slightly masking my ADHD in a blog entry, but since I’m drained and in pain, I am putting in the absolute bare minimum of effort in general BUT I wanted to get this all down because I’m still chewing on a lot of feelings, and unlike the cucumber topped with boursin I had this weekend, they are not dreamy and delicious. So you get words, but you’re also going to see a lot of parentheses where I go off on a small tangent, and I’m not sorry because you knew what you were getting into.

So.

This weekend, we did a family vacation to New York City.

I love New York City. Even after this exhausting weekend, I still love it. I love it with lessons learned and with confusion gained, but I do love it. There’s something about the energy there that… I don’t know. It feels like it breathes. I don’t just mean the six sprillion people there at all times (because if it were just the people, I’d say the same about Disney, which has its own distinct energy, or other crowded places, but I hate crowds, so that can’t be it). It’s just something about the city that is simultaneously so populated that there are entire countries that can’t compare and that is just a tourist destination, that’s both full of photo ops and must sees AND full of people just going about their daily business. The sidewalk sparkles, which is probably just a combination of mica in the concrete and garbage, but it just. I don’t know. There’s an energy there that I love, even when I’m not feeling it myself.

I won’t say that I used to go all the time, because that’s simply not true, but I used to go with some sort of frequency. My teens through my early twenties were sprinkled with trips varying in length from roughly a school day to a week, and I always loved those trips. I remember the first time I went was with my high school government class, and I remember nothing about anticipating this trip or planning for it or anything but actually being there, and then the experience divides itself into a handful of tiny memories, like snapshots from a photo booth:

  • Driving downtown on our tour bus and being very close to Central Park on one side and buildings on the other, and the locals were just crossing the street in a manner that suggested they were about to walk straight into the bus, and we country hicks were universally baffled by this behavior because did they not see the bus right in front of them? Spoiler alert: tour buses are almost as common as pigeons in Manhattan, so it’s less that they didn’t see the bus and more that they didn’t care.
  • Battery Park and then what can only–by process of elimination–have been the boat ride to see the Statue of Liberty, even though I don’t remember anything about seeing the statue or anything about Ellis Island, the other part of that tour option. I just remember “I am in Battery Park” and “I am on a boat.” 
  • Visiting the United Nations building, which I assume was the purpose of the trip. And this gets broken down into two smaller memories:
    • Seeing a gift from China to the United Nations in the form of an enormous carved diorama made of pure jade, which was extremely rare and expensive. I don’t remember what the diorama was, just that it was jade and carved and from China.
    • Being in the gift shop and telling my government teacher that I was buying an Israeli flag because I’m Jewish. Note that, at the time, I was not (to my knowledge) Jewish at all; it was just very fashionable in Evangelical circles at that time to say things like “I’m an adopted Jew!” which… there’s a lot wrong with that statement, to be honest. And I told these bizarre details to my government teacher and, to his credit, he did not call me out on this, just sort of nodded like “sure, makes sense.” But the joke was apparently on sixteen-year-old me, since as it turns out, a branch of my Polish ancestors were actually Ashkenazi, so whoops? 

And that’s it, that’s the full experience from that first trip. I remember exactly nothing else. I almost feel like I could’ve dreamed it, but no, in old pictures of my bedroom, there’s that Israeli flag, sticking out like a sore thumb among my doll collection and other international artifacts. So it must have been real, but it certainly felt like a fever dream.

The next year, I returned to the city, this time as a Christmas gift from my parents and Auntie Beth, who lived in New York at the time. Auntie Beth did an AMAZING job showing me around the city; we did everything from getting sweet potato fries at a diner (I had never known such a thing existed until that trip) to hitting up the MoMA and the Met to seeing Phantom of the Opera four rows from the stage (as any theater kid from the 90s knows, this is an absolute peak experience) to taking in a flower show to meeting up with more aunts and uncles and cousins for a big fancy expensive meal to taking in the view from the top of the Empire State Building. Unlike with the previous trip, the memories from this week are overwhelming and numerous. Because Auntie Beth was a local, she seamlessly navigated us through the city in a way that seemed as effortless as breathing to seventeen-year-old me. 

The only truly negative experience of that trip was the Amtrak ride to and from the city. I don’t know what Amtrak’s deal was, but the ride that was supposed to be maybe four hours, tops, wound up taking closer to six on the way there and closer to ten on the way back. The way back was particularly awful, as none of the cars had air conditioning on what was the hottest day of the year so far, and then, when the stuffy air already had us all gagging and swaying in our seats, the dining car ran out of every food that wasn’t hot coffee or light beer. 

There was the time that I went with my college choir and stayed in this really odd place that was part theater, part dinner theater, and part… dormitory for 9/11 relief workers, I guess? We all slept in this bizarre room that seemed to have bunk beds going on forever and ever, and there was a proper fancy stage in the building and a little meeting room that overlooked whatever street was outside. I remember that the place was just off Times Square, literally steps from all of that mayhem, but you never would have guessed. I don’t remember if we performed (though we must have), but I do remember going all over the city like the dorky tourists we all were, and that everyone was scandalized by the appearance of the Naked Cowboy as we scooted along through the Times Square area to where we were staying. 

Another time, my brother got us tickets to see Wicked on Broadway, so we found a hotel with two beds (a surprisingly tall order in Manhattan) and took a Mega Bus into the city. We spent about two days just wandering around, seeing whatever sites tickled our fancies, taking random pictures all over the place. When we called home on our last day to tell our parents we were heading out, they shocked us both by announcing that they’d acquired a kitten in the roughly eighteen hours we’d been gone. In the crowded streets, I thought I heard them say that her name was “Twitty,” and I was fully prepared to scold them heavily for choosing a terrible name for a cat, but no, her name was Tweety, which was much better.

Then Kyle and I hit the city for a day on one of our many drives back and forth to Texas. We mostly hung out around Central Park and took it easy, not really looking to do too much while we were there. We did, however, make the terrible and severely touristy decision to eat our dinner at T.G.I.Friday’s, which, like, it’s New York City. It’s one of the foodie capitals of the world. And we ate at Friday’s, and their food is microwaved and they charged double for it because we were idiots who ate at T.G.I.Friday’s near Times Square. Brilliant move, really.

The last time I went was with my mom, who was trying to get a visa to join my dad on his six week work trip to China. Chinese visas are, apparently, complex beasts, and the process required heading to the Chinese consulate in New York City. She never actually did get that visa, but we had a good time in the city anyway. We stayed in some fancy pants art deco hotel near Macy’s, and because my mom understood that New York City is a lot of walking, we took cabs everywhere. And we didn’t do too much touristy stuff–Central Park, shopping at Macy’s, peeping various sites near Times Square–but it was still a fun little trip. 

So I like New York City. A lot. And I thought, in a genius manner, that it would make for a great family vacation, and honestly? It kind of did, but I also learned a lot of things while we were there. Namely: 

  1. New York City at almost 20, New York City at almost 30, and New York City at almost 40 are very different animals. In my 20s, I could probably have wandered around the city from dawn until dusk and suffered no ill effects, and I have to remind myself that I’m not in my 20s anymore, even though I haven’t been in my 20s for roughly 10 years at this point. When I planned out this trip, I noticed that everything everyone wanted to do, save for Carrie’s preferred adventure of going to see the Statue of Liberty (or as everyone renamed her on the trip when we saw how much the ferry was rocking, the Statue of Liability), was around Times Square by a few blocks. Easy peasy! I can do that!

    Except, well. No I can’t, apparently. Twenty years ago, I was practically skipping around the city. I could have gone all night! Even ten years ago, I took the cabs with my mom, but I think I could’ve done okay without. But I’m not twenty or ten years ago, I’m now, and the me of now moves a lot more slowly and gets tired a lot more quickly.

    For example, on our Statue of Liberty day, I planned for us to do three things, which seemed reasonable: we’d go see said statue, then have lunch at a really cool market/counter service hybrid place I knew about, then close out our day in the city by seeing the New York Public Library’s map room. Three things seems reasonable, and for twenty-year-old me, it probably would have been reasonable, but almost forty year old me struggled with just getting to the statue. This was partly because we got a little lost looking for parking, partly because we had to navigate everywhere with my rollator (named “Wheelie” by the kids), and partly because the Statue of Liberty is kind of a most of the day thing. You have to do airport style security to get there and then wait in this long line for the boat and then try not to hurl as the boat pitches through the water and then maybe you go up into the statue or maybe you don’t but either way, the wait for the boat was hot and the boat itself was kind of stuffy and more than anything else, you want one of those fresh squeezed lemonades you keep seeing people drinking, and then when you do look at the statue, you have a bunch of emotions about so many things and you’re not really sure why, and then of course we have to go to the gift shop to get kitschy souvenirs and by the time you’re ready to leave, it’s almost two, and you’ve still got to eat lunch and find an accessible subway station and get back to Bryant Park before the library closes at 4:30.

    What I’m saying is that we got to lunchtime and Kyle and I looked at each other and then gently negotiated with Sam to see the map room later because even if he was okay (and he wasn’t, he was whining about his feet hurting), we were exhausted.
  2. The rate of change in New York City is terrifying, but also I’m just old and haven’t been there in a long time. Remember above where I talked about all the times I went to New York City between being sixteen and being twenty-eight? It wasn’t a lot, not like an annual thing, but enough that I felt familiar with certain parts of the city (like Times Square, Central Park, Rockefeller Center) and could wayfind pretty easily when near those places.

    This is no longer true.

    I don’t know what happened. Everything about Times Square looked completely backwards to me on this trip, and I couldn’t figure out which end was which or where I needed to go or why. I’d think I was looking at one end of Times Square and then nope, I was looking at the other. We spent a LOT of time in that area this weekend, mostly because we parked at the New Jersey Port Authority Bus Terminal, and I just had no idea where I was the entire time. Rockefeller Center was the same way; I felt like I was in some sort of alternate dimension New York City where everything was the same except a little to the left or sideways.

    Which made the whole trip really hard. I was our navigator at first, sort of (I say “sort of” because it’s hard to hold a phone and navigating while also holding onto a rollator), but before being even halfway through day one, I had to give up. I had no idea where I was going. I understood the streets as much as I ever did, but beyond that, it was a weirdly off version of a place I’d been before. I didn’t like it. It felt like shoes that were two sizes too large or driving somebody else’s car.
  3. This city is not very accessible. I’d never considered this before, honestly, because when I used to go to New York, I had two fully functioning legs and zero fibromyalgia. Now I have one leg that works all the time, one leg that’s like 60% there and 40% dead nerves, and fibromyalgia that flares like a bitch when I’m stressed, even if the stress is good (like, say, the stress of a vacation). I thought I’d prepped enough for this by bringing my rollator, taking plenty of Aleve, and pacing myself. And don’t get me wrong, that all helped, but…

    Well. Like I said, NYC is not terribly accessible. It’s got one of the most comprehensive subway systems in the world, but with all of those stops, very few are actually accessible if you have a wheelchair or other mobility device. We were lucky because I can stand and walk shorter distances without Wheelie, so if we popped up at a station without an elevator or accessible entrance, we just lifted Wheelie through and pressed on. I can’t imagine if I’d been in a wheelchair.

    To the city’s credit, many of the sidewalks are fantastic to walk, but plenty aren’t. I kept getting stuck and having to heft Wheelie over curbs or cracks or whatever, and then I’d imagine if I were in a wheelchair or scooter and then I’d feel kind of sick to my stomach. As I said above, I’m lucky because when worse comes to worse, I can walk, but even so, the accessibility left a lot to be desired.
  4. I am a lot more disabled than I thought I was. I’ve had this conversation a lot with my physical therapist, where it’s turning out that my body is–for myriad reasons–nowhere near where it used to be or should be in terms of functionality. When I started PT a couple of months ago, my therapist (who is wonderful and encouraging and has helped me make really great strides in terms of overall strength) noted that my left leg is significantly weaker than my right leg overall. Likely this is because of the nerve damage I’m 99% certain is there (because it’s not like I’ve been doing leg day on one leg while the other dangles), but whatever the case, I’m at about one and a half legs at the moment.

    Which I didn’t think was a huge deal because, for the most part, I’m living my life in a normal way. Sure, I need my rollator to get around, but that helps a TON. Last month, we did a family trip to Salem, and I managed just fine there. I can go to the mall without issue, I can go to Target without issue, I can do my PT without too much issue (though it wears me out, but anyone who’s been through PT understands that particular tiredness). In my day to day life, I’m fine… well, maybe not fine, but I’m not suffering and I don’t come across things beyond my capabilities very often.

    New York City is beyond my capabilities.

    I don’t mean that my legs fell off as soon as we entered the city limits or that I flopped around the streets like a fish (can you imagine that, flopping around NYC city streets? Blech). New York is a very walk-y city, as I’ve been mentioning, and some combination of the heat and sun plus my only one and a half legs plus my fibro acting up when I’m stressed (even good stress like vacation stress) had me exhausted so quickly every day, drenched with sweat, gulping for air, and begging to go back to the hotel (or well. Internally begging, which warred with me also internally saying, “NO, we are STAYING HERE until we DO ALL THE THINGS.”).

    On our last day, when we shuffled from city parking to the New York Public Library beside Bryant Park, my legs immediately began screaming in protest, like a pair of toddlers denied their binkies. Before, I had been trying to pace my walking stops a little more evenly: every 2-3 blocks, in the shade, for no more than a minute or two. That day, I couldn’t. I had to stop so often, and I hated myself for it. This was less because I saw myself as an inconvenience (I’m in therapy to delete thoughts like that; unless someone in my family actually expresses that they find me inconvenient, I know that’s just my brain lying to me) and more because I SHOULD BE ABLE TO WALK A LITTLE BIT LONGER BEFORE MY LEGS NEED TO QUIT.

    Having your physical capabilities diminish is fucking hard on a lot of levels. I’m having a lot of chats with my therapist about it, but it’s a process. It’s grief and frustration and so many things. 

ALL of that said, I don’t want to give the overall impression that (a) it was a bad trip or that (b) I’m now going to become a hermit and stay in my little hovel forever and ever amen. We had a genuinely good time overall. I definitely teared up at the Statue of Liberty (something about seeing a symbol of the best my country can be hit me in the gut… either that or I was seasick) and had an incredible lemonade sitting in the park on Liberty Island.

I had the most delicious pasta of all time–mafaldine with a mushroom ragu–at Eataly near the World Trade Center.

We enjoyed an honestly adorable meal at the American Girl Cafe near Rockefeller Center, where I discovered the joy of cucumbers topped with boursin and also got to watch my kiddos interact with the dolls they borrowed to be their lunchtime buddies. 

I breathed in the energy of the city, more than a little marijuana smoke, that heartbeat I remembered so well. I got to enjoy the inside of the library, imagining that I would one day be Very Rich and build my own library to match with just as many Expensive And Important Books, maps, and artifacts. 

And then after, when I was evaluating my experience, I took a moment to be REALLY ANGRY that my body is now creaky and exhausted instead of young and spry and then I started thinking about and researching trips we could take as a family that took my disabilities into account. There are so many of them! More than I was expecting! In particular, I got excited about all the National Parks that are accessible because I’ve been dying to take my kids to see everything gorgeous this land has to offer, from Yellowstone volcanology to that giant hole in the ground that is the Grand Canyon to the enormous sequoias and everything in between. Apparently, being permanently disabled (which I can’t call myself because fibro is such a weird condition and we don’t have a proper idea of wtf is the issue with my leg yet) gets you free admission to National Parks as well; so while I’d much rather be able to walk and run and do New York City without every day ending at 2:00 p.m. because I’m exhausted and crying in pain, there are a few silver linings. 

(another silver lining that Kyle doesn’t enjoy is that cruises are often very disability friendly, and you can rent a scooter to have with you onboard a lot of the larger lines so that you can enjoy that vacation as much as an able bodied person. His argument is that cruises are still large boats on water)

Anyway. Another trip in the bag. Even when it’s painful and exhausting, I love going on these trips because I know my kids are making incredible memories. Sammy, despite complaining for weeks beforehand that he didn’t want to go, told me the last night of the trip that he didn’t want to leave, and really, I think that speaks for itself in terms of how well things went. 

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.

Messy Houses

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Our house is a mess.

Our house has basically been a mess since we moved in, but it’s been messiest in the four years since the twins were born because taking care of small humans takes a lot of work, and sometimes, it’s all we can do at the end of the day to stare at the scattered toys and papers and books and crayons and say “meh. I’ll worry about it tomorrow.”

It’s gotten better. A few weeks ago, in anticipation of some friends coming up to visit, Kyle and I dove into a whirlwind cleaning spree, throwing out so many things and leaving the main living areas of the house look more “lived in” than “disastrous.” Our entryway now has a nice little set of cubbies for everyone’s shoes (or at least everyone whose shoes are below a size 5). Our bathroom, while not spotless, looks nice and usable. Our dining room is usable. Our kitchen is still a disaster, but I think we need a full day for that alone, so I find it forgivable. 

But the house is a mess anyway. And I have lots of reasons for it, like my increasing physical disability (update on the CPAP thing: definitely getting more restful sleep, but that’s just one problem solved, and my fingers and toes and everything have been in pain for about two years now, so let’s see what happens there) and the fact that all three of my children have some sort of special needs, visible and invisible. Frankly, as long as people aren’t tripping over things or existing in filth, that’s good enough for me. 

But that said, I still get a sinking feeling whenever something happens. Fellow parents know what I mean.

Something like the twins are being too quiet, so I go to investigate and find that they’ve gotten into our supply of foaming hand soap and used it to create a rave. Things like they’re playing tattoo shop and have covered themselves with marker drawings or they’re playing beauty parlor and have painted themselves and the couch with nail polish. How did they get the nail polish? I have no idea. It wasn’t there a second ago. Twins are their own mischief engine.

It happened today. Carrie was playing school with me, using the wall and her magic wand as the pointer to teach me words; I obediently repeated the words she said as she said them (“cat,” “Baby Box,” “DJ Catnip,” “Mercat,” “Cat Rat,” because we are on a Gabby’s Dollhouse kick) and ignored it when she used the wand to scratch at the wall as if drawing. After all, it’s a plastic magic wand, so it wasn’t going to leave a mark. And then Isaac joined in and it was all good fun.

Except Isaac did not have a wand.

Isaac had a crayon.

And I had that sinking feeling, because I imagined someone coming into my house and seeing crayon all over the living room walls, which are themselves a disaster. The chair rail is cracked in half in one place, held on with duct tape. The paint has peeled off in other spots, and there’s a large white plaster patch underneath the window AC unit. When I can trust the kids more to be less destructive, I’m looking forward to really making it look gorgeous. Maybe I’ll paint some designs on one wall or maybe I’ll just hold off until the economy figures out what the fuck it’s doing and save any further painting/chair rail destruction for the inevitable renovation that I’ve been vaguely planning in my head since we bought the house.

But right now, there is crayon on the wall. Marker on other walls and on all of our furniture. Our couches have nail polish and a lot of mystery stains, most of which are water but some of which are probably something else that I couldn’t identify if I tried. Our carpets are just sad and waiting to be torn up and replaced with vinyl. 

It’s embarrassing on some level. I remember friends I had when I was really young who had been in foster care for a little while. Their mother was so afraid they’d be taken again that she would bleach the walls of their house. Any mess was a disaster because she never knew if a social worker would show up. And that was always a fear in the back of my mind, maybe based in that or some off handed comment by some other adult in my life when I was young, that if you didn’t keep a perfectly Martha Stewart Living esque home, someone would come and take your children away.

I hate that. 

Because the truth is, my kids are happy and healthy. They scribble on the walls because they feel safe at home. Are they supposed to? No. Did they get in trouble for it? Yes. But honestly, I’d rather have a home where my kids feel safe enough to do something like color on the walls than a home where they’re so afraid of messing up that it gives them an anxiety complex. I want them to know that no matter what they do, no matter how messy things get, they are loved and they are safe. Nobody in this house will ever stop being loved because of crayons on the walls or mystery stains on the couches or ground up crackers in the carpet. And they’ll be helping to clean up those things, as they always do, because when you make a mess, you clean it up. 

But they’re safe. They’re happy. And that’s what really matters.

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. 

Little bit louder, little bit worse

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Do you ever get serious deja vu about life? 

Things just seem to go in cycles, patterns repeat themselves, and then you end up looking at your situation and asking, “…wait, didn’t we JUST do this?” which is annoying because nobody wants to keep doing stuff over and over again AND YET.

Long and short, Kyle got laid off on Friday.

It sucks. There’s no other way to say it. We weren’t super comfortable lately (various unexpected expenses keep popping up and, as per usual, they end up costing roughly $500), but we were managing. I was thinking about getting a job in the fall after recovering from my spine surgery, just to give us a little more wiggle room for Things. And we were managing. 

And then Kyle got laid off. 

It wasn’t his performance. It wasn’t tight budgets. It wasn’t a CEO throwing their weight around. It was a managerial decision that made a lot of sense, which is even more annoying because there’s nowhere to throw any misplaced frustration except space, I guess. Space and capitalism. But more the latter than the former. 

Friday was all about getting ducks in a row: Kyle signed up for unemployment and signed the two of us up for state healthcare (which, in our state, is really good). I called the hospital and rescheduled my spine surgery to make sure that our health insurance will be updated before I go in (because while any insurance we’d have would be retroactive to the first of the month–when insurance should kick in–I don’t want to wrestle with billing departments over a $40k surgery). We both sat down and cried. We both went on all the sites to see how the job market is looking in Kyle’s sector.

And on the upside, it’s a decent enough market. Lots of jobs for his title, a lot of them with remote options. Lots paying decent money. And in the meantime, we have families willing to help us out as much as we need. This will hopefully be a short season, and it’ll be a season where Kyle gets to spend a lot of time with the kids and with his family, whom we haven’t seen in two years (thanks, pandemic), and then take care of me/them after my surgery in August. 

But I wish it weren’t going to be a season at all. It’s that Lord of the Rings feeling, where you wish the ring hadn’t come to you and that you weren’t living through these times. Sure, you can decide what to do with the time you’re given, but that doesn’t make it feel any better to see Gandalf fall down to the middle of Middle Earth or to have the damn ring around your neck try to turn you evil every second of every day of your life. I think both of us are happy to make the best of the 24 hours we’re given in this shitty ass season, but I’d really prefer to be in a better season.

Like maybe one where we’re financially comfortable, where the world is an objectively good place that isn’t constantly heating up, where I can feel optimistic about the future for more than 15 minutes at a time. 

But instead, we just sing this verse again, and really, I’d just rather move onto the next. 

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. 

Spring

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I started writing this a couple of weeks ago because I was feeling ranty, and I don’t even remember what I wanted to rant about (C-sections and autism, I think? Tl;dr – my C-section was amazing and I would do it again, Autism $peaks sucks, and autistic people like myself and my kiddos need acceptance, not just awareness, the end). And now, I’m looking at it like (a) I’m not in a ranty mood anymore, so I’m not going to rant; (b) my blog is WAY too depressing, WAY too often; and (c) what if I want to talk about good stuff?

So you’re not getting a rant today. Sorry!

Instead, you’re getting me cheerfully updating you on my life, why I’m feeling optimistic, and what’s up next!

BIG OPTIMISTIC POINT #1: SHOTS!

My name is Abby, and I am FULLY VACCINATED AGAINST COVID-19!

Obviously, all sorts of crazy things could still happen. The world is still in some measure of chaos, and who knows what variants might come from Brazil or New York or something. I sincerely doubt anything will mutate so much that we’ll be back where we were in 2020, but anything is possible. 

BUT for now, I am 90-someodd percent protected from getting infected. And oh, my god, it feels so GOOD. And even better, almost my entire family that can be vaccinated is very close to the same boat! My dad got fully vaccinated around the time I did (I qualified earlyish because of my asthma and obesity, he qualified earlyish because of his old) (ha ha), and my mom and Kyle both have one shot under their belts. My sister is up next once I find her an appointment next week (I’m the family’s designated “vaccine finder”), and I keep hearing from people I love that they’ve finished their second shot, that they’re fully vaccinated. 

And I know that *technically* we’re not supposed to jump right into everyone hanging out again, but GOSH, I just really want to go and give my aunties and uncles and cousins very tight hugs because I haven’t seen them in forever. And I can’t wait to see people in person after canceling playdates and get togethers all last year. Two of my cousins had babies in the last year and I haven’t even showered them with gifts like they’ve done for my babies yet! And we’re all so close to being vaccinated, and I’m just like AUGH please please PLEASE let us be able to get together for the Fourth of July, that would be amazing.

(granted, I will probably be on copious amounts of painkillers–more on that later–but I wouldn’t miss it for the world)

My favorite, favorite, FAVORITE shots moment came really early on when my friend who’s an ICU nurse got her shots. She’s been really heavily on the frontline this entire time and has been so strong and brave (which, I remind everyone reading this, doesn’t mean she hasn’t been afraid or had moments of weakness, but that she accepted those facts and continued to be the amazing, compassionate nurse she is anyway), and knowing that she isn’t going to get Covid was just like…

(I don’t even have words for it, so just picture me squealing with delight and bouncing)

The pandemic is far from over. There’s still a non-zero chance that my kids will get sick, and that makes me very nervous, BUT the risk is decreasing pretty steadily. Shoot, look at death count graphs lately, and you see a very sharp drop-off starting about two weeks ago, at least in states where the most at-risk got vaccinated first. These vaccines work. When I got my second shot, I teared up a little bit, not because it hurt, but because it feels like a genuine real time miracle: the world got together to fight back against a collective horror and we’re going to win. It is amazing what human beings can do when we stand united.

And related to me getting my shots…

BIG OPTIMISTIC POINT #2: PLANS!

I have plans.

Maybe it’s just how my autistic brain functions, I don’t know, but I am at my absolute best mood-wise when I have plans. I love looking at the future and being like “oh awesome, something to look forward to.” And honestly, the pandemic rained on that particular sort of parade a lot, because you just couldn’t plan for anything. Inevitably, things would close or get cancelled, and you’d be stuck at home, thinking too much about Tiger King or something (seriously, how was Tiger King a whole-ass year ago?). 

But I’m vaccinated, Kyle will be fully vaccinated as of May 6, and we’ve got plans.

Plan number one is our anniversary. We’ve been married for ten years as of May 22, and I was feeling mildly sulky about it not being as big of a deal as it could have been because of Covid, but then vaccines actually worked and I was like, no, you know what? This is a big deal. We’ve been through a lot together, some really difficult years, but what we haven’t been is on a real actual date without the kids in more than a year. 

So we’re going on a BIg Date, by which I mean we’re flying to Florida for a weekend.

It’s a risk, but it’s a calculated one. We’ve been reading every article that’s come out about Covid, variants, and vaccines for ages. We’re not data scientists, but we’re human, and while we’re not crazy about the idea of being in a plane with recycled air for three hours, we’re also vaccinated. So we booked a first class flight (anniversary trip, plus it ensured we wouldn’t have to sit next to anyone who didn’t share a house with us, AND it meant that we could be in the absolute front row with nobody’s air coming back at us), we rented a car, we made the plans. Of course, we’re hitting Disney. Of course, we’re getting our toes wet on a beach. Of course, we’re still going to the Melting Pot. 

And I feel beyond excited and also a little stunned, like is this really a thing that’s happening? I half expect everything to get cancelled again, and it may very well do just that. 

But oh, to TRAVEL again. The thrill of going places, of using tickets, of the smell of stale coffee and exhaust, of announcements over a PA and the knowledge that something exciting is happening, I’m just over the moon about even being in an AIRPORT again.

And then we get back, and life is going to continue! I’m getting new glasses! I’m prepping Sam to go back to school in the fall!

I’m having surgery!

BIG OPTIMISTIC POINT #3: BACKS!

Remember back at Thanksgiving, when I had such agonizing sciatica pain that I went to the ER and they were like ‘mm, that’s nice’ and gave me a nerve blocker and a lot of painkillers and promised they’d follow up but very little came of that because everything is 6000 times slower because of Covid so I’ve been gradually feeling more pain ever since and panicking about the idea of it getting WAY worse and me basically having to shit in diapers all the time?

(my brain is a fun place)

So despite Covid delays, I did get to see an orthopedist in January, and he recommended that I go get an MRI. The MRI was its own fun thing because they were already booking a month out, but then Kyle’s company switched insurances at the beginning of March (and my appointment was initially on March 5, I think?), so they had to cancel the appointment, get approval from my new insurance, and rebook the appointment. 

WELL. 

The new insurance said they wouldn’t cover the MRI because I hadn’t met my deductible yet, so the office just. Didn’t rebook it. And blah blah blah, I basically had to call them and say I’d pay out of pocket for it, which, long story short, is part of where our Biden bucks went (more on those later). So my MRI, which was supposed to be at the very beginning of March ended up happening at the very end of March. And it was a fine experience. I got there before sunrise, lay perfectly still in a loud machine while looking at pictures of a calm beach, and then was told I’d have my results soon. 

So here’s my back:

At the very bottom on the left, you can see the root (haha) of all my problems: a herniated/ruptured disc that’s compressing my S1 nerve root between itself and my magnificent bone spurs. On the right, you can sort of see the way the erupted disc material is covering up the nerve in question, which is why I can’t feel any of my inner thigh and otherwise feel like cold lightning is shooting down my left leg. It’s really fun.

The first doctor I saw wasn’t too big on the idea of surgery; he wanted to start with conservative approaches, like epidural injections to just turn off the whole nerve for a while, which would’ve been great back in October when the problem started. But now, it’s the middle of April, nothing has gotten better, and I just want to get my life back. And I know that surgery doesn’t guarantee me getting my life back, but I feel like it’s doing more than just putting a booboo bandaid on it and wishing me good luck. 

So the second doctor I saw agreed, but said that the surgery might be somewhat complicated by my size (because I am, in fact, fat), since their retractors are only so big, so if they can’t reach my spine during the surgery, they can’t do it. BUT in either case, they scheduled me for surgery on July 1 (and I’m like HNNNNNGH SUFFERING FOR TWO AND A HALF MORE MONTHS THIS WILL BE FUN), so we’ll see what happens. I’ve been judicious about my diet since that point (save for Easter week, when I just ate brownies and chocolate bunnies as quickly as possible so they’d go away), and I’m hoping to find a way to walk every day (which is harder than it sounds, since we live on a very steep hill, like it feels like a 45 degree grade, and that is B A D for herniated disc spinal issues). 

But either way, we’re actually doing something, and I know where the problem is now. Once the surgery is over, I can reenter physical therapy and focus specifically on healing that area instead of just doing general stuff and hoping it works (which I think actually made things worse before). And with any luck (read: hard work on my part), I can finally put my back behind me. 

BIG OPTIMISTIC POINT #4: MISCELLANEOUS!

And a list of other miscellaneous things that have me happy right now:

  • We bought a new (to us) van yesterday. A 2016 Honda Odyssey fancy pants version with heated leather seats and screens in the front and a cooling box and seating for eight and rear temperature control and SO MUCH SPACE and everything about it is wonderful. It’s a little bit of a price stretch at the moment, BUT it’s worth it because our old van was basically falling apart at the seams. 
  • Sam is finishing up his testing to go back to public school in the fall. A lot of it relates to him being almost obviously on the autism spectrum and scoring SUPER HIGH on ADHD tests, and we want to make sure that he’s able to get whatever accommodations he needs in school next year so that he doesn’t fall behind at all (because he’s absurdly smart but he’s also very… mmm, executive dysfunction-y). We’ll be having that meeting the day before Kyle and I leave for Florida next month and with any luck, they’ll really see him and be able to give him whatever accommodations he needs next year.
  • The twins continue to excel in school, which is wonderful. Their vocabularies are soaring, and they’re absolutely loving their class and their friends. Carrie, who was already pretty conversational, has added so much vocabulary to her speech, and it’s hilarious. She’s got enough vocabulary to express herself more clearly but she also sometimes grasps for words, like the other day, she wanted us to close the car windows because they were messing up her hair, so she said, “Turn it [the windows] off! My hair is not working!” And that was adorable. And Isaac has gone from being incapable of expressing himself when things are hard to being able to confirm in words what he wants when we ask him. Today, he informed me that he wanted the lights turned back on in his bedroom (because he didn’t want to sleep yet), and he’s just overall been so much more talkative and happy because he has words and is understood.
  • Also the cats are awesome. And Kyle is awesome. We’re all awesome.

Spring is trying its best to start in these parts, and thankfully, it feels like life itself is coming back to life. And that’s a good feeling.

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…