The last couple of days have been a blur of Chanukah candles, S exploiting his suspension (and me) at home, Avdi trying to work around all the added commotion, me trying to navigate the emotional gauntlet that is Y, me trying to coordinate the medical and transportation labyrinth, and catching up on sleep in between.  My dreams have been unusually insane.

But it’s all good.  I got to borrow J’s car, so I actually could go grocery shopping, run errands, and schlep myself and all my stuff to and from Avdi’s.  The kids were happy to get all the little tchotchkes, for the most part.  E made some really excellent from-scratch latkes; we were all impressed.  They really are an amazing chef.  The last time I saw Avdi yesterday, he actually looked slightly less fatigued.

Here are a bunch of photos.  I’ve even included my little “cubicle” downstairs.

This has been a particularly overwhelming week for Avdi.  “Bleak” was one of the words he used to describe it.  I was glad when he asked to have me over for “moral support”.

As it happened, he was in a school meeting with school officials about the issues with S, when S had a meltdown and trashed his classroom and got suspended again.  So S was with Avdi when he picked me up, and spent the afternoon alternating between calmly playing as if nothing had happened, and having a long, shrieking meltdown over having to take a nap.  So a more in-depth comprehensive approach to S’s issues will have to be worked out.

Meanwhile, Y and the others continue to have their own crises and difficulties, while Avdi struggles to get work and business done.  It’s really not humanly possible to carry all that alone, and yet he does.  I wish I could get him an assistant or clone for Chanukah!

On a happier note, they all lit the 6 Chanukah lights (times four menorahs), and they got a few more tchotchkes each.

I’ve spent a few nights at home to spare Avdi giving yet another ride; the kids are very demanding.

It worked out, because there’s always more pesky business to take care of.  My dentists needed help getting sorted out and caught up to speed, which means a ripple affect of last minute appointment-and-ride rescheduling for me, not simple.  There is no way I’m delaying my major dental reconstruction project, because of a failure of communication.

Right now I’m waiting on a half-dozen call-backs that are all semi-interrelated and time sensitive, to get the medical, transportation, and food help I need.  I hate feeling so dependent.  What if I were demented and disabled, on top of it, like many oldsters?  It’s like waiting for the dreidel to drop, hoping it’s gimel-loaded!

I neglected to light Chanukah candles while home alone–just not feeling it.  It’s really a family festival.  But I have gotten caught up on sleep, which was very welcome, and worked on eating a more balanced diet, which is challenging.

I don’t mean to kvetch.  I’m very grateful for all the help I get.  I’d be lost without all the kind volunteers who spend their spare time assisting people like me.  Ironically, I had hoped to be doing some volunteering myself in STL, if only I had money and transportation.  How the tables can turn!  As it turns out, it’s probably more productive to stay closer to home and family.

Chanukah with Avdi and the kids is my best one yet.  You can guess from their faces, they were getting into it, too!  It’s a real teaching moment, because they have so many questions about their Jewishness.  The gifts may just be a minor concession to xmas, but the delight in lighting candles together, opening their little gifts and gelt, playing dreidel all evening (trying to find the “loaded” gimel ones), and enjoying Chanukah latkes for Shabbat, were priceless.  It also brought the kids together without outright warfare, for the moment.  I think they and I got closer, too.

I think I misspoke about them getting calmer, though.  The more consistent quantity time I spend there, the more I witness more of those extreme meltdowns over seemingly negligible incidents.  I see how Avdi gets so chronically exhausted.  At the same time, I get to observe and learn appropriate methods of dealing with them.  Working with ND kids, helping them learn to handle and manage their overwhelming reactions to sensory, emotional, and social difficulties, is a longterm process.  You’re building trust, and modeling how to function and cope in the real world.  There are no shortcuts.

Gotta wrap this up and head back into the fray–bearing more small tchotchkes, of course.

Does one’s first yeast bread count as a coming-of-age milestone?  If so, E (13) just achieved it very successfully.  It’s a simple but perfect Italian style loaf, crusty on the outside, soft on the inside.  Mazel tov!  You could call it a…Bread Mitzvah!

The kids are still experiencing emotional distress and transitions, but I do see progress.  In general, they seem a little calmer, more secure, and affectionate, at least when I’m there!  I think they save the worst of it for when I’m not!

The other night, after Avdi and Jess went out (together, for a change), S went right to sleep, the others did, too, and I actually got some sleep, which is rarer these days.  NyQuil (for my hellcold) sometimes helps!

Yesterday, (after catching up on more sleep), I made myself walk to the antique store and dollar store, to finish buying Chanukah gifts for everyone.  It’s amazing what you can find in an antique store.  Between online and local shopping, I’m done, and stayed within my tiny budget.

I think I’ve gotten two things right in my forgettable life: I had Avdi, and I moved here to be with him and my grandkids.  I hope it makes up in some small way for all the bad decisions I’ve made.  I guess they’ll be the judge of that.

Welcome to my new world of cancer benefits!  It seems once you’re pronounced dying of the Big C, everyone starts being friendly and concerned.  Just being old and poverty-stricken isn’t enough; once you enter the exclusive C-club, you can actually get a few minor perks to help you afford to stay alive.  A nun even helpfully called me–that was a first!  She actually told me I need to get more friends so they can drive me to doctors?!  Plus when the news eventually leaks, your Gkids suddenly love you!  But I exaggerate; it’s all good.  I think they were already warming up to me.

Since the last time I wrote, we had S’s official birthday party, and Shabbat.  I even got to go to a middle school play.  I baked a peanut butter and jelly cake for S, some new and familiar friends came over to party i.e. get a sugar rush, I slept over, and cleaned and baked challah and made Shabbat dinner.  I’m going over there again tonight, so A can get to go out.  Why do I even bother to come “home”!  Oh yeah, to catch up on sleep!  Throughout all this I’ve had the cold from hell lingering for a week, which is not fun, but y’know I’m a Jewish martyr, oy.  Plus Avdi has one of my favorite bourbons, er, medicinals.

Here are some festive shots.

Today I learned I have the same leukemia (CLL) as my mother.  I guess it does run in the family.  Mine is at a low level, not like I’m going to drop dead of it tomorrow.  Most of the cysts and -cytes were benign or not too enlarged, and my white count is only slightly high.  My giblets are OK!  There’s not a lot they can do, other than monitor it.  So that was anticlimactic.  Now back to bed to nurse this cold from hell.

(Arnold Lobel, F&T Are Friends)

Today would have been my mother’s 96th birthday, the first one she didn’t live to see.  I’m not sure how to feel about that.  Even if we had been close, she was to all intents and purposes already dead for years.  She wouldn’t have recognized me, let alone her birthday.  This is why merely existing and being kept technically alive is the tragedy, and the part of dying that scares me the most.

Still, I thought I should at least pause to pay some respect.  I was a very difficult kid, coming of age in the 60s and 70s.  I watch my grandkids’ meltdowns and frequent emotional crises, and imagine how unsettling and shocking my behavior and attitudes must have been to parents from the school of children must be utterly subservient and unquestioning and disciplined.  It must have been traumatic and bewildering.

Witnessing my son going through that times 400%, with almost no help or recourse, even all the neural/behavioral information we have available now is not enough to cope with the overwhelming pressure and stress on a single parent trying to work and manage ND kids.  Neither are the schools equipped to handle it all.  Were times simpler back in my parents’ day?  I suspect not, but kids were just pressured to fit into the expected role, or be shuffled into “special” ed or shop, or just be lost in a crack of the system.

So I must give credit where it’s due—to all parents struggling to keep from drowning in a system that isn’t designed to support them or their kids.  I can start to see my mother’s side of things, dealing with a miserable kid like me, with no recourse but to condemn me to fatherly abuse when he got home.  They didn’t know about neurodivergence or developmental issues; they just blamed the bratty kids and used threats and fear to control us.  It was them against us.

My son has the advantage of knowledge and education, which his kids benefit from, yet it’s still too much for one overworked person to deal with.  He feels like he’s always losing ground and failing; how else would you feel when the system is stacked against you?  He’s doing all the right things: he’s a brilliant, hard worker, a responsible, loving parent, a gracious, generous human, and a son to be proud of.  It’s too much, and yet never enough.

So, my mother.  I haven’t been the greatest of mothers, so I can’t turn around and fault her for trying.  She was from a different time and universe.  She did all the things you were supposed to do.  She provided us with a home and opportunities, whether we appreciated it or not.  Though I drove her to distraction, she continued to love me and especially my son.  Though she’d be baffled by the complexities of his life now, she’d be extremely proud of him, that much I know.

The festivities continued…we had an early birthday celebration for S while Stacey was still in town, with an oreo cake by Evelyn.  I baked Challah, but the meal was ready-made TG leftovers, so easy.  Then we all had a rousing game of Apples to Apples.  Stacey was leaving town early in the morning, so we had a group hug with S in the middle, one of his birthday requests.  I couldn’t take a picture because I was in it.  The doggie definitely monopolized my photos, though.

Granted, there’s a very dark side to Thanksgiving, but our warm family (three gens) gathering was the opposite.  It was happy, cozy, and delicious.  There was a mountain of delectable foods, and another one of fabulous desserts, made by all of us.  We sat around the table enjoying each other’s company, and then on the sofa trying to recover!  Plus Stacey’s large collie Tadhg (sp?) [“tige”] joined us, which was the cherry on top for me.  There was a lot of cleanup, but lots of people to help.  It was the best TG yet.  I forgot to take pictures of all the foods, because I was so busy eating them–and slipping some to the dog.  He of course loves me now.  Guess what we’re having for Shabbat?