Progress Report from MurderBot/ZombieKiller HQ

It’s freezing out!  We have freeze warnings!  It figures I had to reschedule my vax walk to/from CVS for tomorrow, when it will feel like it’s in the 20s.  Who knew.  At least I’ll be less sick for it (until after the two vaxes).

Some possibly good news (or my doctor is trying to not scare me): the PET scan results show nothing “major” to worry about, we’ll find out more at my next appointment.  Which I had to reschedule for the end of November.

Things are warming up at The Avdi’s, at least!  My overnight went smoothly and uneventfully, which is progress.  Even the continuing saga of which culprit stole K’s “personal” root beers which Dad bought for “him” is working itself out!  (It wasn’t me.)

S seems calmer and more self-regulating, at least when I’m there.  He takes naps without even resisting, sometimes spontaneously.  He’s more cooperative (with Avdi) about going to the bathroom, normally a big fight.  Yesterday S got upset because a bowl was slightly wet (he hates anything wet), but he immediately took himself into his bedroom, did whatever self-calming exercise he knows to do, then walked back out and dealt with it.  He’s learning to manage his reactions.

Y has been unusually friendly and affectionate with me, a big improvement.  We were playing and joking around a lot.  They even seem to be a little less hateful to S.  Both Y and E have been going out with friends doing activities like trick-or-treating in town on their own, a positive sign of adjustment.  Sometimes they can be in the same room together and get along!

E continues to outdo themself baking wonderful confections, some for gifts to friends.  They are quite the pastry chef.  It seems to be their therapy, as gardening is mine.  Not to be outdone, Y learned to use the latest scary kitchen droid (I call it MurderBot) to make french fries, which turned out great.

K keeps himself entertained in his computer lair, but also is involved in many clubs and extracurricular activities.  He seems to be the most well-adjusted of them all.  I wish I could have been as self-assured, independent-minded, and secure as he is when I was a teenager.

Avdi got to go over to friends’ Halloween get-together, dressed as a zombie-fighter, while I stayed with the kids.

I realize raising four challenging ND kids until (if) they mature enough to be OK on their own, while working long hours to support everyone, is going to be a long, ongoing process, with or without anyone there to help carry the load or provide moral support.  My small part is negligible, but still rewarding to be able to gain the kids’ trust by being a consistent part of their extended family, and provide what little respite I can for my son.  It’s something I never had from the couple of grandparents I had who were still alive when I was born.


Flip of a Switch, It’s Winter

Here’s how STL winter arrives: a switch is flipped, and it’s winter!  One day it’s 80, the next it’s 40s,30s, 20s.  No “winter is coming”, no gradual fade, just instant cold.  And rain.  It’s very dramatic.

Yesterday when I went to Avdi’s for erev preps, it was still fairly warm, and Avdi and Jess were working outside on the patio all day (until forced inside by a sudden downpour).  I worked up a sweat baking, cleaning, and cooking.  (Also losing weight, my evil plan.)

If it were possible to outdo my already outdone challah, somehow I managed it (critics all agree).  I mean, look at it–it tastes as good as it looks.  Like a sweet goose-down pillow of delicious yumminess.  It’s what everyone looks forward to, and gobbles up.

The meal came out pretty nice as well, including sweet spiced butternut squash rings, and a spinach and peppers dish that completely originated in our garden.  A salad of fresh tomatoes from same.  Everyone liked everything.  I even got S to (reluctantly) try a roasted squash seed, and then he ate a handful!  Not as much luck with the rest of the meal, though.  One thing at a time.

Our table was packed with family, including Jess, food, and lots of friendly conversation.  Y wasn’t feeling well, but came out later to join us.  E expressed really liking our Shabbat “tradition”, and even interest in revisiting CRC.  Meals tend to be a quick affair, pushed for time by other kid activities, but this time there seemed to be some lingering, a good sign.Then everyone helped clear the table.

I stuck around while various kids went to various events, some outdoors, and needed rides home.  So of course it had turned cold and wet out.  Then I came back to my apartment, tossed and turned with cold sweats all night as usual, and finally got some sleep this morning.  It seems to be my new routine.  But–I had lost weight!

Later it’s back to Avdi’s overnight, where I get to test-drive the new pillows we ordered, so maybe I’ll sleep better there.  (Also goose-down, but not the edible type.)




Read This and Sleep

Yesterday morning, at the last minute, my Hema Dr.’s office called to cancel my follow-up appointment because my doctor was sick.  So I had to cancel my prescheduled ride, and reschedule the appointment to the end of November, so as to be able to arrange another ride ahead.  So the suspense continues to kill me!  And possibly a whole buffet of cancers, who knows.  Oh well, it gave me a chance to try to catch up on sleep, which has been eluding me.

I’ve been trying to test my wonky leg (and keep my weight down) by taking walks to stores for stuff I need.  It works out that there are no grocery stores within my walking distance, so I can’t gain it all back!  So far the reinforced leg is holding, as is the weather.  There are even a few trees(!) on the way to CVS, so I could take some colorful photos of my pedestrian life.  Read this and sleep!


“Break a Leg”

As it turned out, we had our own private sukkah-deconstruction-and-beer party!  K mowed the lawn, while Avdi and I took down the sukkah.  When the other kids came out, it had conveniently disappeared!

I played with S and Y, and they even miraculously played with each other.  Some Barbies (including an amputee) took a bath and sunbathed (rated MA for nudity).  Despite all my symptoms, I felt pretty relaxed there.  Avdi drove me home later.

I finally have my new digital scale, so I can monitor my weight.  I couldn’t believe the good news: 125.6.  I don’t get enough exercise (or balanced diet) lately, so I need to keep myself on track.  My goal is 120.  I walked to the store and back, and my leg (fortified by two ace bandages and an ankle brace) didn’t even give out.  I’m going to stay healthy if it kills me!

Tomorrow I find out my fate at hematology.  I guess it’s too late for luck, but positive thoughts are welcome.


Soaking Up Sun and Family

I finally got back to Avdi’s for erev preps and overnight.  The kids had a long weekend off from school and were all home.  Everyone, including me, seemed calmer and friendlier.  Maybe it was just the time off, or maybe something different about me.  I know I’m just getting glimpses, while Avdi gets the whole picture, but there were no meltdowns or tensions to speak of while I was there.  We were all just being a family, in this gorgeous St. Louis fall weather, taking a moment to soak up sun.

We all had a pleasant Shabbat meal together.  I got in the cooking “zone” and the results got high ranks.  I think it did our morale good.  E and Y separately went out to hang out with friends.  S didn’t give me any trouble.  Avdi even got to go out last night with friends and unwind and not have to worry.

Today we were out in the sukkah feeling a little sad that it had to be dismantled, as every year.  So I suggested maybe having a modified sukkah-deconstruction B&B tomorrow, so Avdi could have friends and some help, make a fun occasion of it.  I’m hoping that will happen.  It really was a beautiful sukkah, even if we couldn’t spend as much time as we liked in it.

I have lots of photos to make up for lost time.  St. Louis really is an autumn town, warm, breezy, dazzling sun, and the leaves not even in full color yet.  Still lots of flowers blooming, especially natives.  We even had a fire weather warning, it’s been so dry.





Circling But Not Down Yet

Keeping perspective, with all the crises happening in the world and down the street, on a scale of 1-10, my small worries don’t even make the scale.  The test results, however dire-sounding, are as of yet still undiagnosed officially.  I had to cancel my double vax (COVID/flu) because a vertigo attack was threatening, but it’s not full-blown.  My cough got worse, but I’m just self-medicating.  I can’t do much, with all the dizziness.  Just stay home, isolated, and try to get better.

Down the street, Avdi is struggling to keep it together, with little to no help, and overwhelmed with everything.  Even with recourse to solutions, he literally has no time to schedule yet another plan of action, meeting, or appointment to fix problems not of his doing.  The schools are not managing to provide the disability support and accommodations they agreed to, so the kids are struggling, which puts more load on Avdi.  That’s just a fraction of what he’s going through.  Add on no real help from outside, exhaustion, and extra work to keep it all financed–it’s not humanly possible.  Yet what choice does he have?

Out in the world, polarized factions are all justifying and rooting for their side, screaming for more revenge and genocide.  The side with the biggest guns and firepower “wins”.  Never mind the horrific humanitarian crisis and cost, another holocaust.  When has this escalating violence ever solved or resolved anything?  We’re like outraged apes throwing shit, only it’s missiles and bombs.  Very rational.

It’s easy to get caught up in facing and bargaining with your own mortality, when people all around you are dealing with much more immediate, frightening, desperate situations.  So for now I’m concentrating on getting better this week so I can jump back into the fray.  There’s plenty of time next week to find out my dire fate.

(Arnold Lobel, F&T Are Friends)

Attack of the 50-Foot Woman

It’s a little premature to panic over my test results.  I can pick out the dire-sounding numbers from  all the Greek and picture me riddled with cancer, but I’ll wait on my doctor to interpret the scan and give me the news, bad or good.

For now, I’m preoccupied with more immediate symptoms.  It’s an unusual Shabbat when I’m not at Avdi’s baking, cooking, and cleaning.  I know he desperately needs help, which makes me feel worse, but I’m sure I’ll be back.  What he really needs is beyond my capacity, unless I could become a village.  Or the 50-foot woman, from all the radioactivity!  Right now I just feel like the crawling fried egg (a.k.a.”The Crawling Eye”).

I’m not sure if I’ll go peacefully or fight–I guess bottom line is whether I can afford all the treatments, and if it’s worth all the side effects.  I hear they’ve come a long way with rad/chemo.  But again, too soon to tell.  One thing I resolve to do, is not become one of those pathetic whiners.  If anything, I’ll become more thankful for every minute, and hopefully improve my sense of humor.





I’m Radioactive!

The first hour of a PET scan appointment is just being shot up with radioactive sugar and waiting around in comfort for it to circulate…in a closed-off room because you’re radioactive!  The actual PET scan only takes about 10 minutes in the cylinder, being scanned for concentrated areas of radiotracer that might indicate cancer.  It’s almost anticlimactic (until whenever you get the bad news).  So I’m in that limbo period of blissful ignorance.

Well, maybe not blissful, since I feel like crap from being sick and a sleepless night.  I dragged myself there, but the latest volunteer driver was super nice and encouraging, having worked in healthcare, and also encountered cancer herself.  She took the time to sit and talk about concerns I have, and how to deal with them and make decisions in small steps.

Well, back to bed with me.  Fortunately my next adventure isn’t until Sunday, when I have to attempt to walk to and from CVS to get the latest COVID/Flu double whammy, which will probably knock me back in bed until the next doctor followup.  It’s an exciting life I lead.

I still feel fortunate.  I have a roof, a bed, water, food, enough money and insurance to cover most of my expenses so far, and family nearby.  I don’t have to fear losing those to stray missiles and ballistics every second of my life.


Some Unsolicited Kibitzing

Notice I have intentionally not weighed in on the current Mideast escalation.  Lots of people are doing it already.  If you’re curious, see my son’s posts on the subject–I basically agree, and not because he’s my son.  He just nails it better than I ever could.  Also we’re very Jewish, so calling us “antisemitic” isn’t even logical.  BTW, semitic refers to Palestinians as well, read your history.  Anyway, here goes…

Two evil fascist tyrant governments have been going at it for almost a century, trying to bomb each other into oblivion, while innocent (or complicit, whatever) civilians on both sides are annihilated.  As the military tech and terrorism at the top increase, so do the atrocities and devastation.  It’s a vicious loop–eye for an eye–it never ends.  People on both sides are the casualties of endless war.  There is no easy fix for such a complex situation, or it would have happened decades ago.  This is just the inevitable spiraling out of control.

If you are Jewish or Muslim, watching from the safety of here with outrage and grief as your people get brutalized, it’s natural and human to support continuing vengeance upon the other side.  But in a way, it just helps fan the flames of irrational hate and separatism that incites more segregation and persecution.  Sounds a lot like apartheid to me.  (I didn’t say that.)

That’s all I have right now; just thought I’d throw my subtle two cents in there for the record.  I’m officially sick today, trying to feel well enough to go get my PET scan tomorrow.  Even if I could reschedule, I’m getting laryngitis and can’t talk!  I obviously can’t get to yet another doctor or more drugs easily.  So I’m hoping homemade Jewish penicillin (just to stay on topic) does the trick.  (I’m sure there’s a perfectly effective Palestinian version, that is, if they were able to access groceries.)  (Subtle.)


No Break for Breakdowns

I’ve been getting to experience just a fraction of the complicated bureaucratic disruptions my son has to deal with every day, like he can just take time off from full-time work and caregiving.  How could anyone in that position not be overwhelmed?

He’s delegating some admin tasks like appointment scheduling and researching doctors and case management to me, which is something I’m fortunately able to handle to some degree, especially while I’m just at home not feeling at my best.  When you add IT issues, legal formalities, and incompetence to the list of otherwise straightforward business, you’re talking even more time he literally doesn’t have.  So anything I can do to help is welcome.

Even two-parent households struggle with juggling jobs and kids, but in an inadequate social construct that doesn’t serve or support single Dads of multiple dev-disabled kids, it’s unsustainable and overwhelming.  Humans aren’t intended to singlehandedly balance such an impossible load. But in our misconceived, deluded culture, we still expect humans to labor under this illusion of solitary self-sufficient super-parenthood.  There’s no place or allowance for a community of mutual aid.  Just government or private agencies that are overwhelmed and dysfunctional themselves, or friends and neighbors isolated in the same boat.

I’m not really going anywhere with this, because solutions are hard to come by.  Each one requires more time and more money to line up.  Multiply that by four kids with four different sets of conditions and demands, states not forthcoming with the documentation you need, a district not equipped to handle your autistic son’s behavioral issues, several schools at once demanding your time, on top of your work that’s suffering, and a household to manage, and there’s not even time for the inevitable nervous breakdown, let alone mental health respite.

Meanwhile, S, who is suspended from school again, was home being sad and stir-crazy at Avdi, so they came and got me and we went to a playground with lots of things to do.  Avdi sat at a picnic table and got work done, while I sat and watched S.  There was only one incident, in which he kicked a tiny girl in the sand play area for some minor “infraction”, but I managed to get S to walk away, reminded him kicking wasn’t appropriate, and got him to apologize.  After that, he played with the kids more cooperatively, even making concessions.  He doesn’t quite get why much younger kids don’t behave the way he expects, or that physical aggression is not a solution.

S’s cough was getting worse (he just started antibiotics), and I still didn’t feel so great, so Avdi dropped me back home, where I was able to resolve another [Dr. appointment for S] assignment.  Also, some used sci-fi books I had ordered arrived, which is all it takes to make me feel better.

Here are photos of our playground adventure.  S likes to strike a pose!