ANDMom

Five years ago, the world changed. But looking around, you wouldn’t know it.

Five years ago, a novel virus started to spread. It started to kill people. Soon, the reaction would go from “it won’t come here” to everything shutting down, everyone afraid. But in that fear, we found community care, we found accessibility, we found out that we were, in fact, capable of doing so much better for each other.

Then people got bored with it. They felt not personally at risk. They threw it all away with both hands, living a 2019-or-bust life. Then schools, governments, jobs pulled everyone else back in, convinced them they weren’t at risk and anyways, “you need to work, your kids need to be in school” and they threw away their masks and got back in line.

It’s hard for me to believe that it’s been 5 years. Not much has changed for us since 2020, really. The kids are still in virtual school. The husband still works from home. We don’t eat in restaurants. We don’t fly in planes. We avoid crowds like the plague, because, well, they probably have the plague. We still mask everywhere we go, wash our hands obsessively, wipe down things coming into the house (because, uh, have you seen how gross people are, coughing on things without even a vague attempt to cover? Literally watched a kid wipe snot on a railing in public one day).

We live in an alternate universe, and some days I’m honestly not sure if I’m the crazy one.

But I look at the science. We know Covid damages the brain, the heart, the immune system. We know it causes heart attacks, strokes, diabetes. We know it causes miscarriages, stillbirths, heart and neurological defects in babies. We suspect it can cause or accelerate cancers, bone loss, tumor growth. We know that for some not-small percent of people, it can take months to return to baseline; we know for others they never do. We know there’s been an increase of overall illnesses; we know there are infections spreading at rates far above their pre-pandemic norms. We know some of these would previously have only been seen in people so compromised that they were considered AIDS-defining.

That’s the universe I live in; the one founded in thousands of studies all showing that this is bad and you should not get it. But the universe I watch everyone else live in says it’s a cold, no big deal, it’s fine.

Sometimes I think about where we would be if we had gone into the Universe of Denial like so many other people. The husband would be working himself into an early grave, because the commute was sucking up nearly 4 hours of his day, every day. (Four hours that we now spend cooking real meals from scratch, going on walks, spending time with the kids, swimming in the summer …) A would be involved in so many more things – band, Scouts, the radio/TV station – but may have not found the volunteer opportunity that is currently steering where he wants to go to college and what he wants to study. He’d be running himself ragged – and us along with – trying to keep up with all his activities, while never actually feeling all that connected to any of it, because none of the kids in our tiny town “get him”. D would be exhausted all the time, probably getting solid B’s and C’s, instead of his 4.3 GPA. (Accessibility! matters!) I would be fighting school on the regular just for him to get the things he needed to keep up, and his entire future would be on a different path. N would … well, honestly, probably still have been pulled for virtual/homeschool because the stress of school was already killing him in 2nd grade and school was unwilling to help him, and his grade is made up of surprisingly vulgar, racist, and violent kids. I would have a lot more surface-level unfulfilling friendships with other moms, who when push came to shove would abandon me (see: what has happened since 2020). And of course, we’d all be sick all the time, because we were in the before-times and everything is worse now. D would be in and out of the hospital with infections probably, and we may not have been able to keep him feeding tube-free.

And when I look at it like that, I can’t actually say we’d have been better off if Covid had never happened, or if we pretended like it didn’t.

Maybe we live in a alternate universe, but we live in one where we spend a lot more time as a family. Where I don’t have to fight for my kids to get what they need to get a good education. Where we spend more time on leisure and less time frantically running around trying to keep up with all the extra-curriculars, parties, events. We spend our time – and our money – on the things that make us happy, not on things we feel obligated to do. And, of course, we are listening to the science, not the vibes, and protecting ourselves from long-term damage as much as we feasibly can. I am fulfilling the promise I made to those embryos that I would do literally anything to protect them and raise them into good people who would do what is right, not what it is easy.

It definitely could be worse, this alternate universe of mine.

Last week at the dinner table, one of the kids asked what the biggest silver lining was about the pandemic.

I bit back my immediate response about a certain family member I now haven’t seen in 4 years, and said “all the extra time we get to spend together”. Which is true. (The kids all answered “virtual school” which was … surprising but gratifying to hear!) We spend a lot more time together than we ever would have otherwise, and it turns out we actually like each other as people. Go figure.

One of the things we do a lot is play games. They’ve gotten very good at Gin, but they refuse to play Cribbage with me. They’ve heartedly embraced all those stupid card games like Exploding Kittens. (Can you tell, I sit these out? Obscure rules, attacking each other, no thank you.) Every once in awhile we pull out the board game Pandemic (and laugh and laugh and laugh at the concept of the world trying to snuff out a novel pathogen, and when we inevitably lose, say “yeah, that tracks”). We also really like Code Words, especially when we do kids v. adults because … 21 years of marriage, it’s like we live in each others’ heads.

We all have our various video games, which sometimes we play together, but mostly they play alone or with their friends. I personally hole up with Disney Dreamlight Valley, and occasionally toss it at one of them, begging them to catch those fish, find the blue chest, feed the freaking fox that only comes out before I’m awake on the weekends.

The other day, I was playing Wordle, and they saw my 730 day streak and were like “uh, do you play that EVERY day?”. Indeed I do! And now they’ve all started playing again too. Wordle (but NOT Worldle – geography is not my thing!), Quordle, Octordle, Crosswordle, Redactle, and Guess My Word. More recently, I’ve added in NYT Connections, The Missing Letter, and QWERTL. I was trying to give them other options, and now we hate-play Semantle sometimes too.

And so, as we sit around after dinner, we’re all comparing our stats and people are finishing up games and asking for hints, and ….

This is nice. It’s nice to have my kids wanting to do word and logic games and sit around helping each other, and ….

This is the silver lining. These nights, sitting around, watching my kids laugh together, instead of being teenagers and retreating to their rooms to ignore us and each other.

So, here we are, starting the 5th year of the pandemic. Nothing is better; things are only worse. We’re still here, still isolating, still masking.

One thing I consistently share with people is the way covid can damage the immune system, because they’ve all watched us struggle with an immune compromised child, and they all have professed over the years to “love” him, but so like … why not protect him? Why not protect *yourself* from having the same issues?

The only thing that seems to consistently come up is people believe it can’t or won’t happen to them. Which is crap, and makes me angry at them, but the side point is … they also believe that if it *does*, they’ll go to the doctor and they’ll get help.

Oh sweet summer child. Do I have news for you.

While it’s true, we’ve made a lot of progress with D’s health over the years – no more feeding tube! – and IVIG really does help him stay healthier, they don’t see the struggle to get here. The struggle to *pay for all the things*. We can always count on paying out our full deductible by March, and March is only possible if none of the rest of us need anything. (Spoiler alert: the rest of us need medical care too, especially me.) And how many doctors we had to go through – at the risk of being accused of child abuse *again* (anyone watch Taking Care of Maya on Netflix? Hit tooooo close to home!) – to get him to this point. How many times we had to go AMA because, it turns out, about half of the doctors in the world are not actually that good. How often they looked at us and shrugged and said “there’s nothing we can do”. How often they *still* do. (Most recently: he can’t drive, because of issues with his eyes that are too variable to fix.)

And sure, he’s rare! he’s complex! So maybe it’s expected?

But we spent all of last year (so much time! and money!) trying to fix a problem for A too. We ran the full gamut of tests and treatments, and finally they shrugged and said “idk, acupuncture maybe?” No one could help, even though the issue is relatively common. He didn’t respond to any of the normal treatments, so they dismissed us with a “well, good luck with that”.

And me! I had an appointment with my endometriosis doctor yesterday. And, let’s just say … I’m on my 7th surgeon, and no one will touch me. I’ve been on a medication for 17 years that there’s no medical documentation for using past 5-10 years max (in cancer patients), and none for over 2-3 years in endometriosis treatment. We are in desperately uncharted territory. What we know:

• I have Stage IV endometriosis, which has caused significant damage to my digestive system.
• Any time I have gone off this medication, I have rapidly progressed to being in too much pain to function. Sheer blind pain.
• It causes me pain, every single day. Some days it’s just twinges, other days it hurts to breathe.

What we don’t know:

• How much damage there is. It hurts all the way up into my rib cage and shoulders, and pain shoots down my legs. MRI shows that my intestines are “maybe” adhered to my uterus.
• If there’s diaphragm involvement – but there’s only a few surgeons in the world who would touch it, even if there was. (But the shoulder pain and pain with breathing point towards “it’s not unlikely”.)
• What effects being on these medications for so long could have.
• If I can ever go *off* these medications, since I’m still symptomatic even on them.

The overwhelming response from 7 surgeons is “there’s nothing we can do”.

Because, this isn’t a freaking movie, and there’s no happy endings. Sometimes you can be sick and in pain for over 30 years, and multiple doctors – experts in their field! – can look at you and say we just don’t know.

And so enter this novel virus, and everyone assumes that nothing bad can happen to them, and hey even if it did, that’s what doctors are for. I’m screaming into a void, trying to tell them that’s not how any of it works.

There’s nothing to be done, because people won’t believe it until it does, in fact, happen to them, and then it will be too late.

Raising twins has always been interesting – two kids, of the exact same age, with the exact same environment, turning into two completely different people.

All through elementary school, they were together. D always had his health challenges, which were a struggle, but it didn’t really make a huge impact in terms of them doing wildly different things. Even in middle school, there were a few deviations, but no more than you might expect of kids with different personalities.

But now in high school, they’re really starting to diverge, and D’s disabilities are really starting to impact their way their paths are separating.

A is becoming so independent and responsible. He’s always willing to lend a hand. He’s working odd jobs (outdoor/distanced stuff – lawn mowing, pet sitting). He’s volunteering (again, outdoor/distanced stuff). He’s taking on leadership roles in school clubs, he’s purposely building his resume. He’s growing up in all the best ways.

D is …. not, at least not in the same ways. We’re working on independence in life skills, but with his size and muscle tone and balance, so much is a challenge. He’s managing all honors classes and rocking it – but not taking on much outside of class. He can’t do physical labor, so finding volunteer stuff to build his resume is a major challenge. He has a vague idea of what he wants to do for a living, but hasn’t starting working on a path to get there.

This week we *gulp* signed A up for driver’s ed, because somehow, and I don’t know how, they’re old enough to learn to drive?? But we can’t sign D up. He’s not big enough – he can’t reach the pedals *or* see over the wheel. If it was just that, we could start trying to figure out pedal extenders and the like, though I’m not sure how that works with driver’s ed, precisely. But we found out last year that his depth perception problems have progressed to the point where some days he has no 3D vision at all. There was talk of surgery, but it changes so much day to day that they can’t do it. So his vision might never be good enough.

It’s just another stab in the heart. We’ve done everything to give them both the same opportunities and experiences, but we can’t fix some things, and this is one of them. So now we try, again, to straddle the line of being so so so proud of A, while not making D feel bad about what he can’t have.

Two roads diverged in a wood, and I —

I have to find a way to follow them both.

The other day I posed a question on facebook – if you believe Covid is actually dangerous, but don’t take any precautions, why not?

I didn’t get many responses, but the few I got were interesting …. in an exhausting way. Specifically I got one that said “I can’t live in fear” and “I’m just so tired”. I so badly want to respond, but I can’t without further alienating people, so I’m bringing it over here.

We live in fear every day. We’re surrounded by products and protocols that mitigate that fear, to the point where they’ve become the norm, and we don’t even think about the underlying fear. Every time we buckle our seatbelts, we are expressing fear, we are living with our fear, we are mitigating our fear. It’s everywhere – seatbelts/carseats, airbags, smoke detectors, emergency exits and plans, fire drills and active shooter drills, EpiPens, the emergency phone call icon on a phone lock screen, life jackets, life guards, condoms, locks, alarms. For so many things, we are scared, so we prepare and mitigate as best we can, even though our fear often is out of proportion with the likelihood of the event.

For someone not taking precautions, a covid infection is almost a sure thing over the course of a year, possibly more than one. The odds of symptomatic long covid are at least 10% per infection, some studies peg it much higher (20% for kids was the latest one). So someone who is not taking precautions at all is taking at least a 10% risk that they (or their child) will have a long-lasting health impact. There is not a 10% chance of your house burning down each year, of an active shooter in your school, or even a major car accident. Yet we prepare for those things and it’s illegal/neglectful not to but it’s “living in fear” to wear a mask, avoid crowds, filter the air.

But the one that gets me more is the “I’m so tired”. Yes, well, I am too. The problem is, I’m unclear of when “I’m tired” was a reason to throw away my responsibilities – to myself, to my family, to my community. I have been “tired” for the past 17 years, at least. Tired of pain, and tired of fighting for everything, and tired of having to care all the time. But I still have to care.

When you give up covid precautions, it doesn’t just affect you, it affects everyone around you. Everyone who gives up makes it harder for the ones who can’t, just as the people who gave up before you made it harder for you. It’s a choice to make public spaces and necessary services even harder for those people to access.

It’s a choice to punch down. And it’s shit. And it’s doubly, triply, shit for a friend to punch down at you and your kids. It’s a statement saying “we’re tired of caring about you, actually.”

And I’m just expected to take it. Not just take it – but take it and then like pictures of your kids, give you advice when you’re struggling, cheer you on. And I can’t do it anymore. But I also can’t bring myself to punch back.

So, virtual school. Just the words give some people hives. But it’s actually kind of a cool thing in a lot of ways, and I think we collectively screwed up by writing off its good points.

When we switched the kids to virtual school, I was really scared about how it was going to be – and the truth is, I’m still bitter about having to give up my life and my work to make it work. I’m still sad about the things the kids miss out on. But in the end, it’s a better fit for our family, mostly.

N started begging me to go to virtual school as soon as he learned it was a thing. One of his first emails to me, at the ripe old age of 6, was sending me links to different virtual school options. He has a lot of anxiety about school, made worse by two crappy teachers who treated his anxiety as defiance; who failed to acknowledge how unbelievably smart he is, and let him flounder thinking he was stupid.

D’s school experience was always challenging, to put it mildly. For all that schools have come a long way in neurological disability accommodations, kids with physical disabilities get shafted. Things like shrugging when we asked how he’d evacuate from the second floor (“I’m sure someone will swoop him up”), to denying him access to honors level classes because “kids in honors can’t have a para” – when his entire emergency safety plan hinged on a para to “swoop him up”. It was a constant battle to get him equal treatment – and even then, we had to cave and pull him out of engineering and PE, because they couldn’t (wouldn’t) accommodate. Add in a global pandemic and staff who wouldn’t even speak about masking or adding HEPA filters (to a building they admit has poor air quality in the first place), and it was clear, regular school wasn’t going to work for him, and so we ended up pulling them all – to protect him, but also, fuck them *and* the horses they rode in on.

Virtual school, done well, is an interesting thing. It’s a cross between traditional school – there are teachers, classes, assessments, clubs, assemblies, field trips – and homeschool. All of the curriculum, lessons, and materials are provided to us, and there’s a huge range of electives. There are live classes that they’re expected to attend, but if they can’t attend, they have to watch the recording. But unlike traditional school, middle and high school classes only meet 1-2 times per subject per week. (Elementary meets 4 days a week.) Most of the work is done independently – the lessons are presented as written material, but also includes podcasts, videos, interactives, etc. There is so much flexibility. The lessons are all available on the first day of the semester; your only goal is to get it done by the end of the semester, so if you’re particularly motivated, you can finish early. If you’re having trouble with something, you can put it aside and wait until you meet with the teacher for help. Take a Friday off and make it up on Saturday. Whatever.

Overall, it’s been a really good fit for N, because there’s no pressure to perform “on the spot”. Tests aren’t a surprise – they’re on the calendar from Day 1, and on my portal I can preview it and let him know “10 multiple choice, 2 short answer questions”, so he knows what to expect. You don’t know how anyone else is doing. It eases his anxiety significantly.

It’s also been a good fit for D, because he’s no longer physically exhausting himself running around and sitting in furniture that’s not adaptive. He can always see the material. I don’t have to fight for accommodations, I don’t have to worry he’s going to get hurt or left behind. His grades and standardized test scores rocketed, because it’s almost like having the accommodations he needs because of his physical disabilities means he can devote his energy to his schoolwork. He’s taking all honors classes, taking interesting electives, and none of his physical stuff holds him back.

Meanwhile, A was going to thrive academically wherever he was, but this has been such a good move for him socially, oddly enough. The variety of classes and clubs means he’s finally interacting with kids with similar interests and he’s finding his place.

One of the biggest pros of virtual school is how prepared these kids will be for college and life – and it’s where I think traditional school (at least ours, but I suspect most) screwed up. One of the biggest complaints I heard from other parents when all schools were remote was that their kids just weren’t going/needed constant supervision – and I couldn’t understand it. Why do middle and high school kids need to sit on camera being supervised doing math practice problems? Why do they need someone making sure they’re doing their work at every turn? Why can’t they manage their time, take notes? Well, it’s all because nobody ever taught them, but why aren’t we taking this opportunity to fill that gap?

Virtual school requires all that. It requires them to manage their time and their assignments, to ask for help, to take good notes. It was a bit rough at first, because they needed to be shown all those skills, but I recognized it and did it and now I set up alarms at the start of the year, and I keep myself available all day to help answer questions, read through lessons together, etc., but they’re growing more and more capable. Where their peers are still being micromanaged, they’ve figured out what sort of organization works best for them, they’re managing their time, they’re getting it done.

That’s not to say it’s perfect, or that I don’t wish we had other options. I’m sad that they’re missing dances and they can’t just hang out with their friends after school, because their friends live all over the state now. I’m frustrated that colleges look down on virtual school kids, and that it’s so much harder to arrange things like PSATs and volunteering. I’m tired because I’m on call for them all day every day from September-June. And I’m pissed off that this small town that acts all supportive and rah-rah on the surface explicitly refuses to even discuss ways to protect a child – even though the only real ask here is “clean air”. Who would have thought that clear air could be controversial?

But in the end, it’s maybe a net-positive thing that we were forced to make this change. They’re getting the same (or better!) education as they would in the local district, in a way that’s overall healthier for them, and no matter how tired I am right now and how much I crave personal time and space, I fought so hard to have these kids … I’m not going to regret the extra time I get to keep them close.

1,237 days.

That’s how long it’s been since I had time to myself; since I felt like I could breathe.

That’s how long I’ve been screaming into the void. Now I’ve decided maybe I’ll come scream here, a different corner of the void.

When the news started rumbling about this new virus in China, I started paying attention. It’s not Vegas, after all, what happens in China maybe doesn’t stay there. And then it came to the US. And then it came to our state. At that point, our pediatrician advised we pull the kids from school – before the schools closed.

That was the last day we went out in the world “carefree”. That’s the last day my kids step foot in a school building. That’s the last day my husband went to work in the office. That was our last day of “normal” that we will ever have.

D’s health issues have always meant we had to be more careful – but we had reached a good place. With the wonders of IVIG, and the kids all finally old enough to wash their hands, we were operating pretty normally – I mean, yes, I carried Lysol wipes in my purse and used them on restaurant tables and movie theater seats and the like, but that didn’t really stop us from doing things. But a new virus meant IVIG would be ineffective until enough plasma donors had immunity and it got filtered into the IVIG supply, which takes 6-9 months *from time of donation* to start reaching patients.

But it was ok. We were “all in this together.” Until we weren’t. Until little by little people started to move on.

Until D’s friends said “we don’t have to be careful, we’re healthy” and I watched his face fall that his friends wouldn’t be careful for him. Until N’s friends said “we don’t want to play online anymore” and so stopped playing with him at all. Until my sister in law said “well, my kids are so excited to go back to school” in front of my kids who couldn’t go back to school. Until the principal kept saying “we’re all one family, back together again” as my kids were the last kids in the grade to still be remote and they said “what about us” and he repeated “we’re all back together again”. Until the superintendent said there would be no more remote options, no more masking, no we can’t bring in HEPA filters, or talk about ways to keep my kids safe.

Until we were alone.

So that’s where we’ve been. Watching our world get smaller and smaller, until it’s just the 5 of us. The kids are in virtual school; I spend my days teaching and helping them. My husband works from home. The only person we see is my dad, who has been so lonely since my mom died, and even he won’t be careful for us.

But not even just “for us” – for himself. No one will be careful for us – or themselves. I have spent the past 3 years reading the studies, looking for any evidence that we’re overreacting. Looking for a reason to loosen up. After all, everyone else has. But all I see is more and more evidence that I don’t want this virus. I don’t want my kids to get it.

And so here we’ll stay. Alone. Screaming into the void.

Things are starting to go bad, very very bad, and I need a place to put that, so here I am.

About 18 months ago, I went off one of my endometriosis meds. I was losing bone density, and having hot flashes so severe I was vomiting. (Actually, I get cold flashes. It’s the same idea, just cold instead of hot. Shivering and such, even in the middle of summer, under 2 blankets. Hormones suck.)  So we decided to trial going off it.

And it was fine.

Until it wasn’t.

The symptoms started off slow, mostly digestive, some twinges of pain, nothing unmanageable. The digestive stuff has ramped up over the past few months to the point where some weeks I literally have to run to the bathroom within minutes of eating a meal. Every meal. Which, you know, shits. (ha-ha.) At the same time, I’m having low-estrogen symptoms. Hot/cold flashes. Insomnia. Weight gain. Tingling in my hands and face. (Seriously. Being female sucks.)  So my estrogen is so low it’s making life unliveable, but my endo is STILL flaring up because I’m not on a medication further blocking estrogen. No-win.

Making matters more fun, I left my last RE’s practice when he basically blew off my low-estrogen symptoms, saying I’m too young for it to be menopause, just deal with it, or we can do surgery but I won’t like the outcome. And PS how’s my husband’s satisfaction with our sex life?  Dude. I’m telling you I’m miserable and you’re worried about his feelings? We’re done.

So .. I contacted my old RE who wouldn’t take me back but recommended another practice. I say my endocrine for my usual thyroid fun, and she also recommended that practice. so I made an appointment.  And I went. And the doctor is lovely.

But it’s pretty bad when they read your records and say in shocked disbelief, mouth open and all, “so I mean before we get started I have to know … you still have your uterus and everything after all this?” (My placenta acreta/increta report was apparently very impressive.) And she also said “so, wow, you’ve had quite the history with real legit endo. This isn’t your average stuff.”

And I told her. It’s about to explode again. It’s getting worse.  I’ve been turned away by so many doctors and I know we’re running out of options … but it’s about to explode.

She had a different medication to try, basing it off a few foreign studies, because it is basically never used in the US. (None of the standard US treatments are appropriate, for various reasons, mostly their lack of effectiveness on anything but standard run of the mill “painful period” endo.  I am so far past that.)  But it takes about a month to even start working, and also, there’s a pretty high patient drop out rate because people don’t like it. But if you stick with it, it’s pretty effective. So that’s all hopeful, I guess. I was like … IVF. FETs. Shoving something up my vagina doesn’t actually bother me, even all these years later.

And I got home from the appointment … and the next day ..

BOOM.

It exploded.  Dizziness, nausea, diarrhea, and oh the pain. Burning in my cervix. Stabbing in my belly button. Cramping, aching, tugging, pulling.

Five days now of pain, in varying degrees, sometimes extending up to my rib cage.

And like .. no one understands.  My parents haven’t even, in 20 years, bothered to look up the disease enough to gain a basic understanding. The couple of friends I have who have had endo say they understand, but they don’t. You know how I know they don’t? Because they kept getting periods up until their hysterectomies, during which their ovaries remained intact, and they were better after.  Not that their pain wasn’t real, but their disease isn’t in the same league – and they had options, more than they probably new or took advantage of, and options make a world of difference. I haven’t had regular periods in 13 years. Removing my uterus alone would do nothing. Removing my ovaries even would accomplish very very little.  No one even knows if menopause will make it stop, because it clearly produces its own estrogen. And it. is. everywhere. Trying to get it all surgically is fruitless and possibly more damaging than leaving it alone.

So I hurt. A lot. And there is literally nothing to do but wait and hope the new medication works, and take it for as long as I’m able to, lack of safety studies be damned. No one to turn to who has a similar experience. Nothing.

I guess it’s not new, but it had been on pause for awhile, and now it’s as bad or worse than it had been in its heyday. And now I can’t just bow out of life for days or weeks at a time, because kids, school, activities, work.  So I keep on going through the pain, due to lack of other options.

But it sucks and it hurts and it’s bad and scary and isolating … and I hate it.

I like to think I’m pretty savvy when it comes to the Internet, security, and privacy. I’ve been on the Internet since before it had graphics, so I mean, it’s been awhile. I use long, obscure passwords, that I don’t write down anywhere. I don’t use my real information unless I have to. I’m very careful about who I friend, and keep tabs on my privacy settings.

Which is not to say I haven’t had my missteps, of course. Like, ahem, the guy I met online who showed up at my doorstep one day “on his way” from Chicago to Baltimore. (We are NOT on the way, not even a little.) But for the most part, I feel like … I know who I’m talking to.

So imagine my surprise when I got called into the school principal’s office where he wants to “speak to” me about some of my recent Facebook posts.

No I am not friends with him. No my posts are not public. No, you can’t even see them if your friend commented on them. So WTF.

Apparently someone took screenshots of my posts, and shared them with a teacher, who got her precious little feelings hurt, and asked the principal to make me “stop”. To be clear, I don’t even know this teacher. I didn’t call her out or anything. I was posting about how the school fucked up, for the 3rd time in a year, on making an event inclusive for those with disabilities.

So the principal called me in to get my “side” and I yelled at him for invading my privacy, and allowing his staff to engage in retaliatory behavior. I mean, sorry not sorry, there were 3 distinct events that my son couldn’t participate in because the school couldn’t be bothered to make it inclusive or work out details in advance. There was nothing in my post (except some curses) that wasn’t in my email to his team at school so, really, I’m not ashamed, I’m not embarrassed, and above all I am not *sorry* that a grown-ass adult got her little fee-fees hurt when because of her (it turns out, didn’t know until that meeting) my son missed a field trip.

Who does that? I mean honestly? Who a) takes screenshots to share, b) spreads them around school, and c) takes it to the principal? Like I said to the school – I thought they were middle school TEACHERS, but they’re behaving like middle school students.

So, I’m pretty happy overall with how I dealt with the school in regards to that. They were firmly in the wrong (both in how they handled events this year, and in how they handled finding out about my Facebook post), and I let them know in no uncertain terms they should be ashamed of themselves and I’m not going to be intimidated.  But I still feel invaded.

Someone, out of my whopping 60 Facebook friends, took it upon themselves to *copy* my posts to share. Who DOES that? And they never came forward to admit it or apologize for the trouble it caused. I ended up clearing every single person from my town out of my friend list and I’m still slowly adding them back, but the truth is just that I don’t know who can and cannot be trusted.

I feel less free to say anything, even benign stuff, because there is someone there who has the mentality and morality of a 12 year old.

It’s not the first time; and I’m sure I’ll slowly get over it, like I have in the past. But it still feels like a betrayal.

So the moral of the story: don’t say anything online that you’re not willing to defend in the school principal’s office; but also make sure to tell him he’s a giant dickhead for calling you in to defend it in the first place.

Hey all,

I know my blog is pretty quiet, but you know, life. Life, life, and more life. Lots of things, most not worth sharing. Though maybe some worth sharing. I should come back.

But today I’m posting, because I need help. More specifically my kid needs help. And so do a lot of other kids, and adults, and well … people. You probably know some, honestly.

As you may remember, D has a primary immune deficiency. He doesn’t produce enough of the various things that make up a healthy immune system, so left to his own devices he’ll get sick, and then sick will turn into a sinus infection, ear infection, or pneumonia, which he also can’t fight, and he gets weaker and weaker and sicker and sicker and …. well. It’s not pretty. Been there, done that.

For the past 5+ years, he’s been getting a treatment called IVIG which supplements his immune system. We have to go every 3 weeks, and it’s a long IV infusion, but it *works*. He’s healthy. He goes to school. He lives life. He does wild things like gets better enough to have his feeding tube removed.

Well, IVIG is made from blood plasma, from thousands of donors. It combines all the immunity the healthy adult population has built up, and gives it to him, and other kids and adults, who can’t create their own.

But … there’s not enough anymore. The US is having a critical shortage of blood plasma, which creates a critical shortage of IVIG. Hospitals are starting to cancel appointments, change doses, triage which patients need it more than others.

Without IVIG, I’m not sure D or his brothers can go to school. I’m not sure how we live anything approaching a normal life. I don’t want to find out.

How can you help? If you’re so inclined, you can donate plasma. It’s a fairly simple process (very similar to donating blood) – and many plasma donation centers will pay you for your time! You can get more info here: https://www.donatingplasma.org/.

If you don’t live near a center (I don’t), but you have type AB blood, you can also donate through the Red Cross. (AB is the universal type for plasma so all they’re currently collecting.) https://www.redcrossblood.org/donate-blood/how-to-donate/types-of-blood-donations/plasma-donation.html

And if you can’t do either of those – spread the word!

So many people depend on IVIG to be able to live. Every donation helps kids like mine to be able to go to school, live life, and stay out of the hospital.

Thanks in advance for absolutely any help!