My latest medical adventure was ENT and audiology, to try to get to the bottom of what causes my vertigo attacks.  Naturally I have to go to yet another specialist to keep narrowing it down, involving multiple visits, one of which will be over 3 hours long.

This is getting really time-consuming!  But I suppose so is a week of incapacitating vertigo, with no warning.  And that’s not taking into account all the other specialists I have lined up for other concerning issues and body parts.

This aging crap is ridiculous.  When do you get time to just live your life, with all these appointments supposedly keeping you alive?  Now I’m my parents, oy.  The horror.

Here are random photos to change the subject.  These two squirrels were just sitting together in a drainpipe outside my window with their little heads sticking out!

Yesterday Avdi took me to lunch!  This is significant because it’s been so long since we’ve been able to do anything together, and he made time in his busy work schedule to do it.  We went to the beautiful Bowood by Niche, a restaurant right inside an urban garden center, and ate outside on a patio surrounded by plants.  The menu and drinks were well-crafted and creative, and we actually got to talk grownup talk for a change.  I appreciate such respites all the more since they’re so infrequent these days.

It turns out what’s more significant is that my son won’t be able to go to an important conference this week, the final one of its kind, taking place this time right in STL.  He’s been longing to go to it for a long time, but what with kid responsibilities, the high cost, and work, he wasn’t able to sign up for it.  It’s hitting him hard, and I can understand, but there’s nothing anyone can do.  It’s one of the high costs of having so much responsibility with inadequate resources all on one person.

An ordinary person would be angry and resentful that friends have the money and freedom to attend, and he could be forgiven for that, but that’s not my son’s way.  Mostly he’s discouraged and despondent because his circumstances preclude him from access to professional and personal benefits he used to enjoy.  It’s no one’s fault, just unfair reality.  It would take magic or superpowers to fix it, neither of which I possess.

To add to my inadequacy, my stupid bum leg keeps preventing me from helping out in even the most minimal ways.  Talk about karma.  I can’t chance walking over there, which usually makes it go out.  I can’t expect Avdi to have time out to pick me up and bring me home every day.  It’s hard to do even routine chores.  I have enough medical appointments lined up without yet another one to arrange a ride for well in advance.  I hate not being part of the solution, however minimally.  Hopefully this setback too will pass.

Sorry for the gloomy post.  To offset it, here are some scenes from yesterday’s outing.  One can’t even categorize STL’s architecture and landmarks, because it’s all so diverse and unique, with historic 19th century mansions of all types next to iconic modern high-rises.  Nothing mediocre about this midwest town.

I spent the night so Avdi could go get some grownup time.

After the most humongous pizza ever, I was treated to the never-ending  “puppet show” by S.  Puppet show basically means some legos and stuffties interacting with mouth noises across the room with me as a captive audience.  Even when he drifts off into space, my eyes must be glued open.  Riveting stuff.

Finally, relentless hours later, he put himself to sleep on the sofa, with no persuading from me!  With eyes glazed over I gratefully tried to do the same downstairs in my “cubicle”.

Early this morning, on cue, I was awakened by S skulkily standing heavy breathing by my bed.  But hey, he no longer stands at the top of the stairs, afraid to come down, shrieking “Nomi” repeatedly, so that’s progress, I guess!  I feigned sleep, so finally he just lay down on the floor.

Then the 7:15 meds alarm went off, so I sleepily got up, and did the morning routine.  Then guess what–more puppet show!  I was relieved when Avdi relieved me, and drove me home.

There may or may not be a Beer and Badminton (B&B) today, but that’s OK.  I’m actually fine being by myself!

Here’s a picture of my so-called “patio” and morning glory “shrubbery”.  It’s a tradeoff–no garden, but time to myself, priceless.  With beer, bonus.  Seriously, though, I know I earned it allowing Avdi some well-earned furlough.

So hey, I’m not a “once-a-year” Jew (those who only go to High Holiday services, kind of like xmas christians).  I didn’t go!  I watched some of it streaming at home, so much saner.  Actually, none of us went, because Avdi is sick (and tired)!  Also we neglected to reserve seats ahead, owing to the unpredictability and distraction of our lives.  Also so much calmer this way.

It’s nice to belong to a congregation that won’t judge us on that, or on how adequately ostentatiously we dress, how much we donate, or how well we conform.  In fact, the excellent sermon by R. Randy was all about how the “ger”, the stranger in our midst who is to be welcomed and not excluded, is anyone, Arab or Jew, trans or cis, gay or straight, black or white, foreign or American, or any marginalized “outsider”.  Fortunately, at CRC this is literally practiced, not just lip-serviced.

The band was pretty nice, too!  Not much danger of dying or falling into a coma during the service.

Yesterday I baked the traditional round challahs with raisins, and made a festive meal that almost everyone seemed to like.  We didn’t play “musical chairs” over the seating arrangement.  Everyone seemed to be getting along as well as possible.  S wasn’t melting down over the usual triggers.  Y was making an effort to be less contentious.  I don’t want to jinx it, but I think we may be past the initial upheaval of adjusting to a new life, and starting to fall into more structured routines.

Not to say we’ll ever look like the “average, well-adjusted” myth, which is also a good thing.  These kids are precocious and unique, and shouldn’t be forced into molds that don’t fit or work, such as we were as kids.  Having realistic, consistent expectations that adapt to changing or updated situations is healthier, more pragmatic, and peace-keeping.  (For example, Sat. night is traditionally pizza night, no matter what it says on the Jewish calendar.)

Because of our unpredictable situation with the kids, we probably won’t get to attend Rosh Hashanah services at CRC this year, but it’s nice to know in theory a welcoming, inclusive (and affordable for most) community is there for us, plus livestreaming will be available.  More importantly, I’ll be cooking up a festive storm for the family at home, which is more my style these days anyway.  I’ve had J’s car this week, so I was able to go get us some last-minute groceries for erev RH/Shabbat.

The kids haven’t been too out of control for the most part, though they have their moments.  It’s still pretty touch-and-go.  S’s outbursts and shutdowns seem to be a little less frequent, and Avdi is trying strategies to give him more consistent structured routines that work for S.  I’m also finding little tricks to help him stay calm while doing HW; just sitting with him while he reads and reassuring him when he gets frustrated seems to help.

Y is my/our biggest challenge sometimes.  They alternate between obstructive, antisocial, uncooperative, surly moods, and suddenly switching to agreeable and civil.  It’s hard to know what triggers all that rage and insecurity.  It doesn’t help that I recognize those familiar dark moods from my own childhood, which sets off my own anxiety and insecurity even now.  I’m hoping once they trust me more, we’ll make some progress.

I’m finally catching up on posting in the wee hours, when I often wake up and can’t sleep.  Sometimes it’s my only chance to write, and it’s quiet.  Here are some photos from the week.  The croissants were made by Y on a sudden whim timed right in the middle of my baking biscuits and making dinner, so I had to surrender the kitchen to them, which is typical.  But hey, the croissants turned out well.

“Look at our happy, well-adjusted 1.5 kids happily going off to school so we can get back to work!” is what you get bombarded with on social media this time of year.  Not so much do you see the single parent of multiple kids contending with severe neurodivergent conditions, under 24/7 stress and pressure, while trying to single-handedly work to support everyone, while severely sleep-deprived and socially isolated.

Few people can do much about ” Headed for a nervous breakdown, I just want to give up.”  The ones who empathize are eyeball-deep in their own crises, with no time or energy to spare, even if geographically nearby.  Or they’re irrational nutcases and conspiracy theorists.  Or, we want to help and are available, but inadequately equipped for the specific needs and logistics.  (That last would be me.)

It’s not the sort of dilemma you can just throw money or babysitters at, even if you had the resources.  What you need is partners, or clones, or nonexistent time for additional therapy sessions and meetings and support groups and paperwork, or drivers, or errand-runners, or house maintenance, or someone else qualified to manage a pack of crazies while you grab a desperately-needed nap or timeout with a friend.

No one human, even one as responsible, understanding, and long-suffering as my son, can carry all that alone for long.  It’s not humanly possible.  Our f—ed-up society puts us in that position and tells us we should be self-sufficient, then leaves us with no resources to juggle it all.  No wonder even conscientious, mature, stable, hard-working people like my son might be driven to desperation or feel like a failure.

Not all the meds or therapy or caring in the world are enough to make this problem “go away”.  It seems insurmountable, but I have to believe that over time, solutions or alleviations will present themselves.  I’m sure right now my son sometimes feels like he’s just treading water and barely hanging on.  I know I myself feel inadequate and not always part of the solution.  I’m just writing this to let him know he is seen and loved and amazing.

These kids were born after 9/11 so they don’t even remember it.  It’s history to them.  Now there’s a sobering thought.

I spent the night over Avdi’s while he was out.  The predictable tensions between Y and S erupted, but then somehow were subdued, and they quieted down for the night.  I actually got to take a shower and get some sleep.

My morning “alarm” was S standing creepily by my bed and announcing it was time for meds.  Still, it’s an improvement over screaming my name repeatedly, and you can’t fault his dependability.  Meds and coffee accomplished (respectively), he was calm for a while, before suddenly switching to grouchy whining again.  E (who was feeling sick) helped calm him down.

Next thing I know, the miraculous unthinkable happened–after Y heckled S for a while, they actually started playing outside together!  Avdi says it does occur sometimes, but usually Y is antagonizing and hating on S.  Then they were watching TV peaceably on the same sofa!  I couldn’t believe it.  All the above transpired before A got back home.

Avdi took the three older kids to a store they’ve been wanting to go to for costume ideas, and S proceeded to fall asleep across me on the sofa, without a bit of prompting.  We  were like that when the others got back.  I extricated myself and A (who was also starting to feel sick) took me home.  Hopefully we won’t all feel crappy tomorrow.

I think in general the kids are starting to trust me, and I’m starting to feel more at home there.  It’s good practice for a possible hypothetical future move to a house together.  I think I could adjust to that, if I have some privacy and maybe my own minibar!

I finally had my perio consult, wherein they approved me for implants (if the insurance covers it).  As with anything dental in my case, it will be another “12 step program” as I call it, a long, complicated, expensive construction project involving my whole mouth.  The less costly option is too horrible to even contemplate.  Besides, I may not live that long!

I just want actual functional teeth; you’d think such a basic human necessity wouldn’t price out most average humans, even with decent Medicare advantage insurance.  But such is our wonderful capitalist plutocracy.  Medical and dental care are owned and sold like a commodity to the privileged few, instead of being accessible to everyone as a human right.  (blah blah, life sucks.)

But keeping everything in perspective…while I lose sleep about my relatively fixable problem, my poor son is heading for a nervous breakdown (his words) from all the complicated stress and pressure no one person should have to shoulder.  Hopefully it won’t come to that, and solutions will emerge.  I try my best to help in backup ways, but the main issues are beyond my inadequate skills.

Try being a single parent trying to work surrounded by the equivalent of a mental facility (my words)!  And you’re the only one there who can address all the meltdowns while literally in the middle of business meetings.  Never mind managing a household or getting any sleep.  Even if the meltdowns happen at school, it’s still up to you to stop everything to deal with it.

Typical days may feature: a fugitive kid being chased all the way home by a posse of school staff and police, because the kid got mad or frustrated.  Or a kid screaming, swearing, and lying about HW so they don’t have to do it, or just being mean and surly much of the time.  Or a kid shrieking and shutting down for the most basic, innocuous routines, every time.  Or a kid curling up in fetal position from too many stressful stimuli.  Those are just the tip of the iceberg for kids with multiple neurodivergent conditions.

I get to retreat to my apartment sometimes to catch up on sleep (or worry myself sleepless) and write these simpleminded entries.  I feel like a slacker, but if I don’t refuel (or rest my deviant leg) I won’t be of any use to Avdi.  And he needs what little help I can provide more than ever.  (Retirement is a delusion anyway; it’s either becoming flabby and sluggish until you die, or trying to hurry and catch up on all the real living you had to give up while slaving away your life to survive.  Just my opinion.)

I feel fortunate each day I’m given to keep learning and growing and trying to be useful, after all the squandering of opportunities I did in the bad old days.  One day at a time is literally all I’ve got now, so I try to use it wisely, for a change, and try not to panic about what ifs.

I try to ignore aging annoyances and just proceed, but my karma has different ideas sometimes.

That old leg injury is coming back to haunt me, and makes moving forward literally difficult.  But I’m determined not to be one of those old hags whining about symptoms, so I’ll limp through it with makeshift first aid helpfully provided by my son, and hope it subsides so I can resume being semi-useful.

Aging is like an obstacle course to be navigated and doggedly beaten.  Such a nuisance.  I give it the finger.  (Ironically, a crooked finger from another old stupid injury that wasn’t splinted properly.  Don’t ask!)

Moving on (so-to-speak) to pleasanter topics, here are some photos I took after walking to Avdi’s and before becoming a non-ambulatory slacker.