Laughing beats the alternative

This morning I had coffee with a friend after we dropped our kids off at school.  I should have gone right home and done the 10,000 things on my un-done to-do list, but this had been one of those mornings.

Up too late followed by up too early.  My morning Twitter stream reflected this:

 

So, clearly, I needed the coffee and the friendship to get my morning turned around.

My friend, in turn, really needed to talk to someone about another friendship of hers which was hitting a rough patch. And, somehow, of all the people in her life, I am the one who has a direct yet separate connection to this other person, will understand where her frustrations are coming from, and also why she values this friend so deeply.  So we talked for a while, and strategized, and sighed big sighs.  Because this friendship stuff?  While wonderful?  Can also be really hard.

And then, this morning, I started to talk about Jacob and how he's doing.  And for some reason, this morning, something gathered momentum and came together in my brain that I had never let coalesce before, and I was crying and blurting out my fears for Jacob's future.

At this point, although things are far from certain, there is growing in me the gnawing fear that Jake will never be able to live completely independently, will always need some sort of care, a custodian to watch out for him for the rest of his life.  And that shit just tears me apart.

Because at ages 4, 5, 6?  The future is wide open.  We were still thinking we might find the magic hat trick that would rapidly pull Jacob together.   Not a "cure", not a miracle; we were under no illusions that Jake will suddenly fall off the autism spectrum and become "normal" (whatever THAT is).  But some kids I had known since Jake was little, who seemed much more messed up than he was then, have had these rapid turnarounds where they are now merely quirky and odd.  They are now kids who are socially "off" but still in the realm of regular.

They can go into regular classrooms with a bit of help, they are now like the kids we called "nerds" back in my day.  But they will clearly be able to navigate some sort of life for themselves as adults, with jobs (likely in the computer industry).  They will be part of the growing high-functioning Autism/Aspergers community; they will have their own place to fit in.

Jacob on the other hand?  At eight?  Is a lovely, loving boy, making slow, gradual, steady progress.  He is a boy who can talk, but not yet carry on a real conversation.   A boy who still prefers to meow, and growl; who struggles to find the right words.

Jacob is still so often and easily baffled by the world and the expectations of others in it.   And to learn and stay focused?  He needs a lot of support.  Someone right at his elbow keeping his attention on where it needs to be.  And that's not changing much.  And I don't know if it ever will.   I hope so, but I just don't know.

And I think in how few years he will be be a big boy, a teenager, an adult.  Blink, blink.  And I am afraid.  And I cried.

And then, because we so needed to, we laughed until we snorted our lattes out our noses.

I had pulled out my Droid and showed my friend the website I had found last night, that one that had my husband calling out from the other room wondering if I were all right or having an attack of some sort.

The website is called Damn You Auto Correct!  and it's a "reality" humor site, like Sh*t My Kids Ruined and Cake Wrecks.  In this case, people copy and send in texted conversations that have gone horribly wrong because the typing auto-correct feature on iPhones (and other devices like them) has made a baaad, baaad guess and changed an intended word or phrase into something... more interesting.

And often?  Rather obscene.  Or disgusting, or humiliating, or disturbing.

But always?  Utterly hilarious.

Latte snorting hilarious.  Hyena laugh hilarious.  Give yourself the hiccups hilarious.  OK, you get my point.

The funniest are (of course) the filthiest, and I'm not going to share those with you here, keeping some small semblance of decorum on this blog.  But I'm notifying you they are there, don't go there if you don't want to see that.  But if you do?  Please go and snort away.

Also?  Do not be drinking anything when you go to this site.  You have been warned.  I will NOT be held responsible for your messed up computer/smartphone/iPad/husband if you spit-take all over it/him.

Here are a few choice examples that had my friend and I sprawled across the table trying to compose ourselves and happily ignoring the questioning stares of the other coffee shop patrons as we brayed away and used up all our napkins wiping off the laughter tears:

Or this one:

I like the twist in this one:

OK, this is truly 8 year-old boy humor.  But also?  Funny.

And I thought it was bad when my phone turns "Ethan" into "Ethanol":

Here's one that's actually completely clean, yet surprisingly still funny:

But, finally, I think this one is truly my favorite:

See?  So the next time you are getting all scowly at life?  Go there and gleefully waste a few minutes. It will cheer you right up.  Especially if you're also having coffee with a good friend.

Doing the Met Thing

Annette, Ethan and Trina at the Met, 2010

Spending time with my cousins, Jessie and Annette, has always been the best part of my Thanksgiving for as long as I can remember.  We don't get to do it every year any more, as there are, of course, now our subsequent families and their families involved.

This year, although my cousins were both back at home on Long Island for Thanksgiving, we had gone to spend it with my husband's family.  My Aunt Eva, Jess and Annette's mother, had fallen down a full flight of stairs the previous November (which was why we had not gotten to spend Thanksgiving with them last year, either) and she has never been the same.  What was the living room half of the living/dining room in their house has been taken over by Eva, who can no longer negotiate stairs.

Between my Aunt and Uncle, my cousins, their husbands, and two children each, it had been thought that adding our five bodies would be the tipping point and the house could not hold.

Even when we haven't been together for turkey day itself, we have often found ways to get together over the long weekend, either out on Long Island or in the city.  This year the cousins wanted to come into the city to participate in another sometime family tradition, braving the insane holiday weekend crowds at the Metropolitan Museum of Art.

Cousins at the Temple of Dendur, 2010

Cousin visits past: guessing this is 2005 (Ethan on the far right)

First, however they visited Aunt Marilyn who has been moved from the hospital to a nursing home, and is, thankfully, no longer seeming at death's door.  She is now willing to drink milk and eat ice cream.  While not exactly a health diet, at least she will not be starving herself down to nothingness any time soon.

Jess and Annette figured out they had not seen Marilyn since Annette's wedding some 15 years ago, the last significant family event she ever attended.  In 1995 Aaron was a baby, and none of the other kids had been born.

There was much crying all around as they took turns going up to see Marilyn, hold her hands, introduce her to grand-nieces she'd never met, did not know existed.  I didn't join in this part, didn't feel it was right to bring the boys by at this point.  Besides, I was having a hell of a time dragging them out of the house, prying them away from their "screens" large and small.

I feel sad and bad that we live in this city full of magnificent art museums and rarely go.  I was a regular and constant visitor throughout my childhood to both the Met and the Modern (as those of us who live in New York City fondly and familiarly refer to the Metropolitan Museum of Art and The Museum of Modern Art, respectively).

When the kids were little we went from time to time, but I have a pair of boys with poor impulse control, and one a sensory seeker, to boot. The "do not touch" proscriptive was unbearable to them and I got really tired of having to pull them off temptingly climbable sarcophagi while the guards gave us bloody murder stares as they yelled at my kids.

Ethan even claims to want to be an artist, while remaining completely ignorant of art history.  I feel like I have lost my vision of myself as the parent I thought I would be, sharing my many cultural interests and enthusiasms with my kids. The combo of boy energy and Autism has slowly eroded that, and I can see now that I have to try to find a way back.  I think a pair of solo visits, just one boy at a time with me, and on an uncrowded day is in order in our near future.

But back to our outing...

The crowds were out, but not unbearable.  We managed to stay reasonably together and regroup when separated.  We hit up Egypt and then European painting up through the impressionists.  The boys were not completely awful.  Small victories, but significant.

Did they get something out of it, besides cousinly bonding?  I like to think so.  Jacob was sometimes looking at the art, occasionally engaged, sometimes sprawling on the benches claiming he wanted to sleep.

Jake stood in front of this somewhat gruesome, rather morbid painting titled "Massacre of the innocents" and asked "Does he have an owie, Mom?"  Sometimes autism provides the best punch lines.

Jake thinks this (dead) kid has "an owie"

Ethan, on the other hand was mostly practicing his kung-fu moves at the sculptures.

Also?  Giggling away and pointing at all the "privates" exposed.  Having the time of his life yelling "Mom, come look at the weird penis on this one!"

I *might* have hissed at him to get a little class.

He did have some insight, though.  When confronted with a wall full of Picassos I told him they were from his "Blue Period" and said, "You can see why they called it that, right?", thinking he'd go for the obvious color suffused throughout them all.  But he surprised me.  "I think it's also because he was sad."  So there is hope for him.  Also?  He recognized Benjamin Franklin from his portrait.

Finally, a nice Italian restaurant dinner was eaten, and then dessert procured at a very New York deli of many sugary delights.

Think Ethan has had enough chocolate yet, huh, huh, huh?

Cousins were kissed, and sent on their way back to Penn Station.

And when it was all over?  Three "vacation" days were blessedly down, with only one to go.

Stream of Consciousness Sunday: In the Trenches

OK, I'm going to try this one today.  I know some of you may be thinking "Hey, isn't her whole blog kind of stream of consciousness, so what's the big difference?"  Ha!  So, not.  If you know me, you know how I re-think and over-think everything, work and overwork these posts most of the time.  I know it's against the "free wheeling spirit of blogging" but in keeping with my cranky, perfectionist self, so let it be.

Sometimes the posts just flow out of me start to finish, but those have been the ones wrenched from the depths of pain, usually right around a death.  So I'm thankful to say, they haven't been flowing like that lately.  Instead, at this point I have seven (7 !) almost-finished-but-not-quite-there posts and another dozen half-done, underdone, overdone-in-need-of-trimming, or sketched-out-but-bare-bones posts just siting in my cue, mocking me.

And I so want to get out the old wheat-paste and slap something up on my blog tonight, because I have become kind of fond of having become a frequent poster.   I know how I can be once I let stuff slip, it keeps on going down the slope, picking up speed and then?  Splat.  I don't want this blog to become another road-kill in my life.

When I re-stumbled upon all.things.fadra's Stream of Consciousness Sunday linky again tonight I thought: Why the hell not?  So here I am giving it a shot.

The rules are simple:

• Set a timer and write for 5 minutes only.
• Write an intro to the post if you want but don’t edit the post. No proofreading or spell-checking. This is writing in the raw.

Gulp.  OK, here goes:


I am quaking in my boots about filling this page with five minutes worth of stream of consciousness writing. It's because right now I am so far from my shining best.  I am hunkered down, deep in survival mode. I am not sure I want to own what spews out of me right now.  Jacob had a lovely day with his father; at the movies and then visiting his new baby cousins.  I got a beautiful e-mail from their Dad telling me how wonderful, loving and related Jake was with the babies.  I, on the other hand was in full-on battle mode with Ethan over writing homework.

Writing homework: the bane of my fucking existence last year hasn't really come up much tihs year or been much of a problem. Until now.  Big project due tomorrow, begun today in spite of all his teacher's admonitions to NOt wait until the last minute.  Begun today because I just didn't have the mom-balls to push him to start it sooner, because I knew that as soon as it started we were going to have a mother-loving world war three scene like we did today with the screaming and the crying and the throwing of objects and. I. just. couldn't. face.it.  Not now, not with all the other shit flying through my life.

So its due tomorrow and its only half done. SIX hours of heart & gut wrenching struggle to get him to write eight sentences. Shoot Me now. Because tomorrow?  we have to finish the sucker, or die trying.

*****

 
Wow, that was a fast 5 minutes.  This is going to take every ounce of self control I have to not go back and fix that "tihs".  Also?  All the naggy little voices are telling me its not "good enough" to publish.  But isn't that what this exercise is all about, just write & hit the button?

OK, being brave... please be gentle with me.  Ack!

Regarding a Table Half Full

I know it's going to be hard to give thanks and be grateful this year at Thanksgiving. There has been so much loss this year, so much stripping away of the good in our lives.

And yet, I want to push myself to do this.  There is a strong streak of "glass-half-empty" in our family's psychological make up.  Especially prevalent in Ethan and my husband.  I can go that way myself, but also have a big kernel of optimism in my heart.  And I work to consciously feed it, nurture its growth.

One day I will blossom forth, a full blown optimist, contemplating the half-full glass before me.  For now, it's work.  Work that I willingly, willfully do because I want to set an example for our children whose eyes are ever upon us, observing, learning how to be.  From us.  Gulp.

I'm always nattering on to Ethan about how it's not how much you have in life that determines happiness, but how grateful you are for what you have, no matter how large or small that amount is.  I do believe this, really I do.  Even if it's more in my nature to kvetch than count my blessings.  And I so try to remind myself of this, constantly, and especially at this time.

Today, looking toward Thanksgiving I need to find what has held, has grown and thrived, not what has withered up, been washed away.  This year my husband and I have each lost a parent; my Father in March, his Mother in October.  The Thanksgiving table will be bereft of a whole generation this year, for while my Mother remains, she has begged off celebrating with us.

She is feeling too sad, too worn out to make herself rise to the occasion.  And the drive is long, and we are with my husband's family, not her own.   And so, though I briefly considered kidnapping her and forcing her to come along, I have decided to let her be.  My Mother is not eating alone, she will be with her friends in the assisted living community where she lives.  I have been told they make a nice festive meal there.

The table will feel simultaneously lighter and heavier.  Absent of old folks, full of sadness.  Not full of yet the next generation, my month-old twin grand-nephews.  Even though their grandmother is hosting the dinner, it felt too daunting to our niece to travel with such young twins.  I understand, remember well those first, heady, exhausting months.

The year Ethan and Jake were born they were older, four months already at their first Thanksgiving, and we only had to pop them in a cab and head crosstown to the Upper East Side.  And still, I have no memory of it, am guessing I barely ate, so busy would I have been tending to their every, many needs.

Thinking about glasses, half-empty and half-full, I am reminded of a crystallizing moment when the boys were still quite young, maybe 2, eating dinner side by side in their giant high chairs.

We used to bring simple toys to their tray tables to help us keep them entertained as they dined.  I had placed a stack of five cups on Ethan's tray, then lifted one off the top and put it in front of Jake.  Even though Ethan had four cups and Jacob only one, even though Ethan had four lovely colorful plastic cups to play with, he could not get over that Jacob had been given one.  He would not play with the four cups on his tray, he would only stare at and reach for the one on Jacob's tray.  And let me know in no uncertain terms that he. wanted. it. back.

Jacob, on the other hand was blithely unaware of the drama, didn't care that he had a paltry one to his brother's four cups, was deliriously happy playing with his cup while eating his supper.

I looked at my boys and sighed, took a zen snapshot of the moment and realized this was it, I was staring at the distilled essence of their ingrained personalities:

Ethan, always focused on the one thing he didn't have instead of enjoying the multitude of what he did.  Jacob, delighted with whatever the world happened to grace him with at the moment.

It immediately called to mind a tarot card, the 5 of cups.

The man is so focused on the 3 cups that have been spilled, lost, that he neither notices nor acknowledges the 2 still full cups standing behind him. The admonition of this card is to not be like this man, the lesson is to turn away from the spilled cups and to pick up the full.  This is the card of the pessimist, the eternally glass-half-empty attitude.

I did not want this moment to define Ethan, but could not deny how clearly he was embodying this archetype that day.  This would not be Jacob. He would be playing with those 2 cups like nobody's business.  This is something that I wish Jacob could teach Ethan.  Although you would not for all the world get Ethan to acknowledge he has anything to possibly learn from his autistic brother.

So this year, for my children's sake, I will try hard to not dwell on the sadness, the loss.  We all know that this is the first Thanksgiving without Jim, without Blanche.  I will raise a cup of red wine to my father. We will all be holding them in our hearts while we talk, eat, sit together, remember the past and look to the future.

Besides the new babies we have another beginning in our lives.  Barbara's son, our nephew Michael married the lovely Rachel this past May.  They will be there this afternoon, at his mother's house, a young couple on the start of their journey together.  They are the half-full cups at our table, as are our sons.

Today I will look to what connects us.  I will hold our sons, Ethan and Jacob, in my arms and my heart.  They are my glasses more than half-full, they are full-on, full up and brimming over.

I will ignore the fighting, the whingeing, the every annoyance, and hold to the laughter, the silly, joyful exuberance of their beings.  I will not yell or scold.  I will play, laugh, celebrate a house full of family, full of life.

And hopefully, if the occasion permits, I will take a commemorative sofa nap, in honor of my father, who could be found after every Thanksgiving meal, gracing the couch with his gently snoring presence.

And then I will get up and once more enter the fray, the messy swirl that is family, that is life.


Update: My mother changed her mind at the eleventh hour and joined us.  It was lovely and meaningful to have her with us and I was so glad she agreed to come, other than the hour and fifteen minutes it added to our travel time to pick her up (but well worth it).

Wordless Wednesday: Gut feelings

OK, folks, once again, no cute pictures of my kids this week.  Instead... Me!

Yes, it's 1987, hence the curly mullet, but look at that waist!

This is me at 27.  When I still had a waist.  I just needed to prove it, as today, once again, someone thought I might just possibly be a little bit... pregnant?

Really, people, I'm 50.  That ship has sailed.  I'm a little sad about it, but mostly?  Resigned. 

That thing making my belly stick out?  Is my belly.  Unoccupied (unless bagels count as life forms).

Also?  Obviously all the death-watch stress eating and my twin-pregnancy induced severe Diastasis Recti (abdominal muscle separation) are taking their toll on my body.  I need to do something about that last thing.  Although reading all about Mommy Wants Vodka blogger Aunt Becky's rocky recovery from the surgical repair of this same condition has given me pause.

It's surgery.  Major surgery.  Not for sissies.  And me?  Big 'ol sissy about this stuff.  The only time I have ever been a patient in a hospital?  Having the twins via C-section.  I know I'm terribly lucky that way.  And also?  Able to stay as sissy as I wanna be.

But one of these days, I'm going to have to have the surgery.   My abdominal muscles just can't support my back and internal organs properly, all ripped up like this.   I had thought I would do it when the boys were 3 or 4; old enough to understand that "Mommy's just had surgery so leave her alone, she's resting in bed" is not an open invitation to climb up onto the bed with her and jump around doing cannonballs onto her belly.

And the kids had to be old enough to understand that my not being able to lift them up was not a rejection of them.  They had to be out of the "flinging themselves through the air and into my arms every time I came into the room" phase.

Also?  I had to be really, truly, 100% certain there were no more kids coming down the pike, because once sewn up, those muscles just don't stretch any more; rip, rip, ouch. 

That was all before we realized we were waltzing with Autism, and that 8 year-old Jacob is capable, in his enthusiasms, of completely ignoring instructions to be gentle.  He will fling his 80 pound self at me, expecting me to be able to catch him, looking up in confusion when he finds he has bowled me over, a full grown golder retriever that still thinks it's a puppy.

So the surgery is still on hold, for now.

And you know, I think I am going to stuff a picture of the adorable kids in here after all.   I was uploading some photos the other day, and came across a long-lost-and-then-found chip housing a big chunk of 2007.  Here's a nice one of all four of us on summer vacation in the Berkshires: 

 On Aunt Patty & Uncle Jimmy's porch, Summer 2007

Because, 1987?  Skinnier.  But 2007?  Happier.  With my family.


I’m linking up to Wordless Wednesday at Angry Julie Monday.
I'm also linked to Special Exposure Wednesday at 5 Minutes for Special Needs.

Bear Bait

An old Joan Armatrading song is playing in my head: "Some days the bear will eat you... some days you'll eat the bear..."  It's not a great song, on the tail end of her classic albums that were the running soundtrack of my late teens and early 20s (along with Patti Smith, Bruce Springsteen, Lene Lovich, and the Talking Heads).  But the sentiment is apt, as I am feeling like a bear's lunchmeat right now.

Chewed up.

Never fear, I am not about to launch into another long whiny post.  I'll keep it brief.

I know you don't believe me.  I do tend to go on and on in ruminating rambles.  I like ruminating; I like rambling.  But the other day someone praising my blog described my writing as "pithy."  Ha!

I liked the sound of that, even if it is not remotely true.  Well, maybe they meant the "meaningful in expression; full of vigor, substance, or meaning" part of the definition.  Certainly not "brief; terse".  We all know I usually land on the "why use one word when twelve will do?" side of the fence.

But in the interests of not proving this fan a liar, I will hereby attempt pith tonight.  (Although considering how much I have just rambled on during my set up here, I'm not feeling very optimistic about the outcome of this little experiment.)

So, the short, essential version of the whine is:

Jacob's cranky, weepy.  He mangled his glasses today and could not tell me where, when, how.  He just kept repeating "I'm sorry" plaintively when he got off the bus.  And that shit?  Breaks my heart.

I am sure he did nothing wrong.  I kept telling him it was OK, they would be easy for Jeffrey the eyeglass man to fix.  And they were.  I am guessing they took flight, maybe during gym class, playing his beloved basketball.  But I'll never know.

The fact that I will never know some things that may happen to Jake?  Opens a can of fear worms that I can not look into right now, but use your imagination.

Right, that.  I'm not going to talk about it.   But it worries me.

Every day.

Also?  I'm cranky, underslept, overburdened.  I'm still not 100% over this cold.

I spent the day schlepping my Mother to doctor appointments and then to see my Aunt Marilyn in a very depressing nursing home.  The smell that wafts into your brain when you read "nursing home"?

Yes.

Afterward, Mom cried and cried and kept repeating "my baby sister, my baby sister..."  I held her hand.  I kissed the top of her head, gently.  What could I say.

Also?  Ethan's likewise cranky, prone to easy tears today.  He may be coming down with my cold.

If he gets sick, no one will play with him.  I am then looking down the long, cold corridor of 4 days alone with my boys who get along like Tom and Jerry. 

What about my husband, you may ask?  Cranky, overburdened, underslept.  Prone to easy tears.

He is busy going through 70 years of accumulated stuff in his late Mother's apartment, the one he grew up in.  Sorting the wheat from the chaff, awash in memory and sadness.

He is also trying to get all the work done that was shoved onto the back burner in these last all-absorbing months, the black hole of her final decline.

His body is occasionally with us, but his soul is still mostly apart, howling.  I hold his hand.  I kiss him, gently.  We wait for the storms to pass.  What can I say.

We are all cranky.  For a reason.

Score!

Friday morning, in spite of feeling like like something scraped off the bottom of a shoe, I pulled my (wheezing, coughing, snot-nosed) self together and went to a meeting at a local public elementary school.

There was a talk being given there about after-school and weekend sports programs for special needs children. And specifically, on the flier that Jake's fairy godmother had obviously guided into my hands, there was mention of a basketball program.

BASKETBALL!!!!

Jake loves basketball, loves to watch the big kids play and loves to shoot baskets himself.  And also?  He's not half bad.

I had been searching for a local SN basketball connection for a long time now, but nothing ever came up on any search engine, nothing but head scratching from any mom I asked.

I was a bit late to the meeting (head cold induced ass dragging and all), missed the basketball guy's presentation, but managed to snag the LAST cup of coffee from the Dunkin Donuts box (score!) and there was even a little milk left for it.   So I caffeinated myself and sat and listened all about martial arts and SN kids and how balance is hard for many SN kids, but improving it is important for the brain.

All interesting stuff, but where was that basketball guy?  Thankfully, still there, sticking around to answer questions at the end.

And afterward a small group of moms swarmed the basketball coach, surrounding him, our eyes all anxious and hopeful.  And he was such a nice guy.  He stayed and stayed; talked to us for a long time, explaining the program in depth, answering specific questions, allaying fears.

Yes, they will take a non-verbal autistic kid: not a problem, they pair them with an older teenage volunteer "buddy" for a one-on-one connection.  One word came to my mind: support.

The coach told us something wonderful.  He said after lessons and practice and drills, they play a short game every Saturday, and somehow or other, for this youngest age group?  It's always a tie game.

He laughed and demonstrated how he stands in front of the scoreboard during the game and then quickly manipulates the numbers at the end to come out that way.  "Look 40 - 40... another tie!"

He said he does it because so many of these kids are sensitive and might fall apart at being on the losing team. And also there are some kids who only want to play when they win, and this keeps them coming back.  Maybe next week, they'll win...

I was contrasting this with a horrific story I had read at a diary of a mom this week about a child participating in a basketball program that the mom had supposedly carefully vetted beforehand.  A place the mom had THOUGHT was supportive of SN kids.  But they ended up engaging in a practice that boggled my mind.  I can't even describe it here, it will make my blood boil.

Go read that post here, then come back.  If you really don't want to, let's just say that meanness and humiliation were involved.  A complete lack of thoughtfulness and sensitivity on the part of the coach. A set-up for bad feelings, even if the boy had been typical.

I thought about the difference between this coach and that "coach" all day.  I was so damn happy I had stumbled upon this meeting, finally found this program, so right for my son.  I had to contain myself to stop from jumping up and down in glee as I walked out of the auditorium into the wan autumn sunshine.

Still, I broke out into a huge grin, and am sure I looked slightly deranged as I picked up some of my favorite Winesap apples at the weekly Friday farmer's market that sets up in front of the school.  The market workers were all swaying from foot to foot, blowing on the fingertips peeking out of their functional fingerless gloves.  The hot cider was selling at a brisk pace.

Late fall is most assuredly upon us. And finally, this year, that will mean basketball season for Jacob.

I dare not tell him about it yet, because he will want to go RIGHT NOW and play.  Waiting, patience, understanding what "in 2 weeks" means?  Not his strong suit.

But come December 4th we will be there in that gym.  I will have bells on and my son will be the happiest clam on the block.

Jacob will be learning to be part of a team, playing his beloved basketball.  For once, not the guy sitting on the sidelines, watching his twin brother Ethan participate as a member of the group.

The belonging will belong to Jake, for once.  And hopefully?   For all.

Let's Go to the Hop!

(You might want to read my added comment about the inappropriately upbeat tone of this post's title BEFORE you read this post.  Just saying.)

OK, I'm here at the Special Needs Blog Hop.  And the prompt for this week is...
Share a Thanksgiving Memory

And yes it's late into the evening, almost Friday, and still, I have not been able to tackle this one.  I am rarely at a loss for words, but in this case?  It's hard for me to think about Thanksgiving.

Not because of my children, they are generally reasonably well behaved on Thanksgiving (well, as long as there is a television in the house). 

It's my Dad.

This will be the first Thanksgiving without him, our first without my Dad and my Mother-in-law.

Ethan is mad about this.  "Why did Grandma and Grandpa have to die in the same year?  I lost TWO grandparents in ONE year, it's just not fair!  I used to have THREE grandparents and now all I have left is one Grandmother."

And Jacob?  I don't know how he has processed these deaths.  I'm guessing not that much, because he will still ask to "Go see Grandma and Grandpa?"  And he still calls it "Grandma and Grandpa's" house.  Death being such an abstract concept.  (And abstract being so hard for his autistic, language-processing challenged brain.)

Abstract in one way, thudingly concrete in others.

Last year my father was at our apartment for Thanksgiving, this year he is gone forever.

And also last year?  Thanksgiving?  Was the last time he was ever in our apartment, at all.

To tell the truth, even then he was barely there.

Ever to be counted on for a post-dinner couch nap, this time Dad slept on the sofa the whole time.  We could not get him to come to the table.  He barely ate, a man who usually loved him some turkey.  He only roused himself for a healthy big slice of Pumkin Pie.

"He's diabetic" my mother fretted,  "Should he have pie?"

I did not know how to kindly say what I saw and knew, that he was so clearly frail and failing, with such little time left, what did it matter?  It gave him pleasure.  It was what he hungered for.  Let him have pie.

Two months earlier I would have jumped in all motherly and whittled down his slice to a sliver, stood over him and pecked at him until he ate some turkey with trimmings.  Something green, too.  But there was still a man to feed in September.  By November, a completely different story.

And indeed, less than two weeks later we stepped into the serious end game.

So right now my Thanksgiving memories?  All the happy ones of recent years past with this, my chosen family and way back when, with my family of origin, the aunts, and uncle, cousins tumbling together in joy?

Shadowed by the terrible losses of this terrible year.

I have done very little thinking and planning for Thanksgiving this year.  And it's good that there is very little I have to do.  Bringing wine and my mother to my husband's family's house in Westchester (and, as always, GF/CF goodies for Jacob) is about the limit of what I can manage.

We will eat and drink and talk and laugh, but it will be hard to find true merriment in my heart.  I will celebrate what remains, I will let the warmth and light of family wash over me.  But I know I will spend some moments staring out through the big windows into the vast dark, saying goodbye once again to my father, to Blanche.

Our family has grown both smaller and larger this year, the wheel of life has churned on, spinning wildly.  It will spin on ever still, and I am still feeling dizzy.

I will stand still for a moment at Thanksgiving this year, remembering the last: my father in our entrance hall holding my warm hands in his cool, papery, trembling ones.  He thanked me for dinner, told me how much he loved me (as ever he did), remarked on how nicely Jacob was coming along.  I may have reminded him that I would be taking him to the doctor the following week, that appointment that set the final tumble in motion.

We had borrowed a wheelchair from their assisted living facility to get my father over to our place, so I towered over him a bit.   I kissed the top of his head as I took my parents down the elevator to catch their ride.   Dad's last exit from my home.

So while many of us find Thanksgiving to be a day tinged with a drop of melancholy, a tiny hint of mourning for the "perfect" family we had wished for mixed in with celebrating the wonderful, special family we have, I will be doing some actual mourning.  Ticking off another "first" in my year of sad firsts.

And I will raise a glass of red wine (the nice Saint-Joseph I'll be bringing) to my Dad.  And maybe (if the kids let me) take a little couch nap in his memory.

Wishing everyone an enjoyable (and not too frazzling) Thanksgiving.

And?  If you're in the mood?  Hop in and tell your story...

Hanging Ten

Yesterday I was a bit of a hot mess.  I wanted to write a new blog post, because, as you may have noticed, I have written nearly every day this month. Way more than I ever have.

Maybe I'm feeling inspired by all my friends doing the NaNoWriMo or the NaBloPoMo challenges (apologies to my civilian readers, that's real insider bloggity-bloggish stuff).  Or maybe I just have bucketloads of stuff to say and am giving up unimportant things this month, like sleep.

But yesterday?  I was just all unfocused and fuzzy, like my slippers, which I almost walked out the door in that morning.

And writing?  Takes focus.  Even if it's a dreamy focus like when I'm deep in the grief and go into a fugue-ish state and the words just flood out of me like water from a cracked jug.

But tweeting?  Reading (and commenting on) OTHER people's blogs?  Perfect for ADD-rific me some days.  Like yesterday, when all my writing mojo spilled out across the internet, splashed onto other people's blogs.  I was a commenting dervish.

And then there's Twitter.  If you tweet, you understand the appeal of the fairy dust.  And if you don't?  You (probably) think I'm a twit.  Well, you're both right.  Probably.

So (focus, please, here!), yesterday, when I sat down to write, I just didn't have it in me.  I thought: "Damn, I have no words left today, I dropped them all off at other people's houses."

But you know?  Maybe I can visit them tonight, and take a picture and show you (because I am a technical genius and know how to make my Mac do screen shots) and impress you with how smart/funny/cute/ranty and... commenty I was yesterday.

And at the sheer wonderfulness of this approach?  Besides not having to write anything really coherent tonight?  I get to introduce you to some more terrific blogs and bloggers.

And also?  I'm kind of new-ish to this blogging thing, haven't even had my "bloggaversary" yet. So I don't really know what the rules of this world are, and if I'm breaking any of them by doing this bit here.

But also?  I don't really care.  I'm following one of the operational rules of my old career in TV/film production: it is often easier to ask forgiveness than permission. 

So here is me yesterday, flying in from elsewhere, inspired by the wonderful funny, smart or heartbreaking words of others to add a few of my own.  Or in my case, more than a few.  Because, as you may have noticed, I tend to be "long-form" (that's not baggage, that's just the size of my suitcase)...

First off, lets mosey on over and take a look at my early morning Twitterstream:

And then, after joking about it, I nearly did just that by accident.  Clairvoyance?

Um, I was a bit tired yesterday morning.  But also?  Somehow giggly instead of grumpy.  Thank goodness, because I really hate having a three dwarf morning.

Yeah, I'm going to win a Pulitzer with my tweets.

Well, no.  But it does help to blow off steam and let me be kind and nice mom instead of bearish snappy mom.  And THAT is most definitely a good thing.

So after dropping off the offspring and spending a few hours in Jacob-life-management mode (wherein  I inventoried and re-ordered all my son's 10,000 medicines, vitamins and nutritional supplements from 5,000 different sources, and then poured out a week's worth of his 6 different types of a daily packets of them -- don't you just wish you had my life, now?) I allowed myself a little time to surf the interwebs, visiting old friends, discovering new wonders and dropping bits of myself off, my commenty calling cards, along the way.

Yes, I know, if that sentence were any longer it would need its own zip code.  I am working hard to earn my title "Queen of the Run-on-Sentence (with parenthetical clauses)".  How am I doing?

So, back to the matter at hand.   Picture me tiptoeing through the tulips in the garden of web... looking kind of like this:

That is an illustration from the amazing Allie Brosh's blog Hyperbole and a Half.  If you ever really NEED to laugh?  Like, if your life depended on it?   Go there.

OK, so on Kris's blog Pretty All True my response to her funny/painful/honest post "Call Me" was this:

One of the (many) amazing things about Kris is that she always replies to each and every comment, often inciting layers of dialogue.  She is the most interactive blogger I know. And sometimes the comments are ALMOST more wonderful than her wonderful posts.  And best of all?  She likes me, she really likes me.  Cyber-me that is. Which is just fine.

Then I went to visit Jess's blog, a diary of a mom, and read her moving post "The Donut Shop."  Jess is an Autism Mom blogger, and this post was about how hard it is to go out to eat with her family.  But really, it was about so much more, about all the dreams you have for your family and what happens when you add Autism into the blender and hit pulverize.  Her post brought up all kinds of feelings for me, and I left this mini-rant of a comment:

And yes, I need to work on my proof-reading. That should have been "struck" not "truck."

And finally?  Yesterday was Stimey's monthly day over on the Hopeful Parents site (where I post every 10th of the month).  Stimey (real name Jean) is my web-friend and yet another Autism Mom Blogger.  She was a DC Metro area member of the defunct (and just now resurrected) Silicon Valley Moms Group blog,  a sister site to the NYC Moms Blog site I wrote for last spring.  We actually met (yes, in the real world, with our meat puppet bodies) at the BlogHer10 conference in NYC this past summer, and in fact kept bumping into each other every 5 minutes to the point where it became a running joke: "Oh, you again! Am I stalking you or are you stalking me?"

Her home blog is Stimeyland (although you can find her words all OVER the inter-webs) and she is in every way terrific (smart/funny/really real).  Her post at Hopeful Parents, called My Son Knows He Has Autism, was about how she talks with her son Jack (and whole family) openly and positively about his different brain. I read her post (and you should, too) and then left my 2 cents:

Yes, I know there's a proofreading fail in this one too. Thanks for pointing that out.

And that, my friends, is that.  Retiring my surfboard for the night before I reach too far and wipe-out.  Gonna grab a yogurt smoothie.  Take off my web-suit and excavate the sand out of my...

Ahem

Good night all, good night.

Back to Death and Autism... or Not?

Yesterday I wrote a really fluffy post.  I mean really.  It was all mommy-bloggy about coffee-klatching and food shopping and Trader Joe's.  Yeah, ME writing THAT.  Just imagine.  Or don't... read it.

It was a lot of fun and, as I even bragged on Twitter, only mentioned Autism once in a very tangential way and did not touch on the dead parents stuff for even an instant.

Then my dear husband read it.  He is usually a big fan of my writing, but he was taken a little bit aback by the fluffy tone of the piece.  Worried that people coming to my blog for the first time yesterday and reading only that would think me a lightweight, a shallow latte-sipping mommy-blogger all about the shopping with her girlfriends.

"We were food shopping for our families, not clothing shopping for fripperies." I weakly countered.

"But you were buying snacky food at an upscale fancy food store, it all seemed so... frivolous and... bourgeois."

"But Trader Joe's is a discount, CHEAP fancy food store, that's their whole point!"

"Well, it just reminded me of those annoying articles in the Times Styles section."

We both stop and look at each other for a moment.

"And if you get a paid writing gig from this piece I will never say another word about it again - fluff away."

Mulling it over, I realized this post really was off-tone from my usual stuff.  I mean, even my previous so-called fluffy post started with Ethan's feelings on reading a book about autism.

So I added this disclaimer comment on my Facebook link to the post:

You do all know that this is as fluffy as I'm ever going to get? And that this fluffy shit isn't going to last, right? Good. Glad we're clear on that. Expect a return to Death and Autism tomorrow, but for today: fluff.

So now I feel obligated to return to my regularly scheduled programming.  

The problem is I had FUN writing yesterday's post. And I am feeling so burnt out with the elder-care & grieving and special needs parenting.  It was FUN to think and write about something else for a change.

So I'm giving fair warning here: expect inconsistency in the future.

Some days I will still break your heart.

Some days I will show you beauty.

Others I will make you think.

And feel.

But also?  Smile.

I will take you backward.

And forward.

Some days I may whine and rant (sorry).

And yet others?  Pure fluffy Brain Fluff.  (Because some days even I need a break from me.)

Brain Fluff Forever!!!!!

Until I start with the heavy shit again, probably the next day.

Because that's just how I (and my Autistic kid, and my ADD kid, and my 88 year-old widowed moderately-cognitively-impaired mother) roll.

Having My Trader Joe's Moment

Some spoils from a hunting/gathering expedition to Trader Joe's

We have recently acquired a Trader Joe's in our Upper West Side neighborhood, and it still the object of much amusement and wonder to me and my Mom friends.  It's located closer to my kid's school than to my home, so while I talk about it a fair amount, I only actually show up to shop there sporadically.

Yesterday morning I was having coffee after drop-off at Ethan's school with a bunch of mom friends. We've all been rather busy, so it's been awhile since we've gotten a good coffee-klatch going.  There was the usual hysteria.  In the midst of a conversation one mom said, "they should call him Ari" to which another mom at the far end of the table, mishearing, piped up, "What about calamari?"  This caused the first mom to turn bright red as she made the heroic decision to nearly die choking rather than spray coffee all over the mom sitting across from her, aborting her spit-take moment.

With our kids in third grade, most of us have been hanging out together for four years now, and I have to say I have the best collection of friends I have ever had in my life, hands down.  I knew having kids was going to turn my life around in so many ways, but I had no idea it would bring me this incredible circle of women friends. I am wondrously grateful for them, constantly.

This morning after our allotted hour of caffeination and mirth, as we were preparing to scatter to our various errands and jobs, one mom made the announcement that she was off to Trader Joe's for some food shopping, and did anyone want to come along?

I had 10,000 things on my plate, but hadn't been to see Joe in a while, so I thought "What the hell?" and joined in.  Also?  It seemed a very virtuous way to avoid all my necessary "to do" items that needed to be done. "Can't you see I'm shopping for my family, not just procrastinating & hanging out with my friends, prolonging the fun before knuckling down to being a responsible adult.  How DARE you suggest otherwise?"

But of course that was exactly what I was doing.  Sure we needed food in the house, but I wasn't planning on shopping this morning yet, hadn't taken inventory of the cupboard, hadn't surveyed the fridge, and menu planning?  Please.  No such beast in our house right now.   So really, I had no list and no clear idea of what was needed at home food-wise.

Might I mention?  Not the wisest of plans.  It was however, boatloads of fun.  There were four of us altogether who set off on the expedition to feed our families, and a merry band we were.  Maybe we shouldn't have had the free coffee samples at Trader Joe's as we were already caffeinated to the hilt.  In any event, when you're at a store called "Trader Joe's" and the staff all wear Hawaiian shirts and have leis around their necks, shouldn't it be an adventure?

Well, I learned something new. With no plan and no shopping list, food not really on my mind, but WITH a bunch of fun giggly good friends in good spirits?  Was way too much like being in college and going food shopping with housemates, thoroughly stoned.  As I distantly recall (it's probably been 30 years).  (Yes, I'm that old, and yes it's been that long since I've done THAT, if you must know.)

So I'm being all: Oh, over there, that looks yummy... into the cart the chazzerai goes.  Also?  I was highly suggestible: whatever my friends bought that looked good, I bought, too.  Whether I or my family members will actually eat those items?  Remains to be seen.  All in the spirit of "let's try new things."

We were giddy.  We were having fun food shopping.  Awesomeness abounded.

Now, the Trader Joe's on the UWS is a strange subterranean sort, real estate in NYC being at a premium and all, existing on two below-ground levels.  So there are these strange cart & people dual escalator things (I'm sure you've seen them) to travel between the levels.  Fun!

We had just finished shopping the upper level and descended to the bottom when a friend lost her cart.  She had put it on the conveyor, but when she arrived at the bottom?  Not to be seen.  It just... disappeared.  There was a cart, but it was not hers; was someone else pushing her cart?  Quel mystery...

While scratching our heads, I noticed another woman walking by with an employee in tow, looking for her missing cart.  On a hunch I pointed to the one that had come down the escalator just after my friend.  Yes, that was it!  But, she did not, reciprocally, have my friend's cart.  Stolen?  Unthinkable. After much searching, it was finally located -- still upstairs.

As best we figured it out: distracted by the levity and conversation, my friend had grabbed the wrong cart (this other woman's) and sent that down the cart escalator, leaving hers waiting forlorn, abandoned at the top.  Mystery solved, cart firmly in hand, onward we rolled.

We had each been to Trader Joe's numerous times but never together, so the advice was free flowing, always useful, often entertaining.  A big improvement over asking opinions and advice from strangers or employees.  Who knows what they eat?

"Ever tried their  hummus?"
"Yes, delicious!"
Into the cart it goes.

The cinnamon almonds?
"Do NOT buy, more addictive than crack!"

"irresistible snack" indeed

Should have listened, polished off the bag in under 24 hours.  (I was considering suing them but it has that warning right there on the bag, damn, guess there's no one to blame for my gluttony but myself.)

And no, it wasn't all useless junk in my cart, look at the picture up top, there's fruits & veggies: strawberries, heirloom tomatoes, oranges... oh, wait, those are chocolate oranges, my bad.

Also?  Trader Joe's is all with the program of having a lot of well labeled gluten-free, dairy-free items which I am always on the lookout for.   My son Jacob is on the GF/CF diet for autism, and has been for 5 years.  New yummy stuff is important to keep him from getting bored, keep expanding his food options.  Scored a lot of that stuff, too (mommy non-fail).

Eventually our carts filled and we had to hurry home to keep the frozen stuff frozen, so we finally settled into the checkout lines.  While there, we, of course, fell prey to the shiny objects lined up alongside the line, designed to catch our eyes and leap into our carts (hence the chocolate oranges).

The lines moved fast and the conversation was still sparking, and the mom next to the chocolate oranges was kept busy tossing them to the rest of us, so in no time we were all checking out.

Once again, I remembered why I love coming there, as I had an awesome cashier who was upbeat and chatty without being annoying and over the top.  Her lovely British accent may have been a part of the magic, that and the fact that she actually packed my groceries with a system and managed to put the heavy crushy things on the bottom the delicate ones on top and all my freezer foods in one bag together - genius!

Thank you, Lola, you are the best checkout-person ever.

The guy running the elevator looked at the four of us in terror as we piled in with our carts for the ride back up to the surface, but we all fit, and were comparing this experience with the evil elevator of the other, competing neighborhood market, Fairway.

"I have a friend who says she has to have a Xanax before she walks into Fairway."

"Everyone needs Xanax to survive Fairway"

"Hey, that's a great idea, they should have a free Xanax station at the door there, alongside the shopping carts."

We all decided Trader Joe's was infinitely more fun.

And when I got home? A million things to snack on, but nothing really to make for dinner.  Oh, well.  The local pizza place is on speed dial for a reason, folks.


P.S. You know?  Trader Joe's must have major blogging mojo going on, because Kris just wrote a hysterical post on her blog Pretty All True about shopping there with her family recently: Hence the sarcasm.  Go, read, laugh.

And the Hop goes on...

Thursday again, and I'm hopping away on the:

This week, there is not so much a question to answer as a direct command: "Tell us a funny memory involving your child or children." (or we make you walk the plank?)

OK then, nothing like being asked to produce funny on the spot that is nearly guaranteed to freeze me up in my place. (OK, yeah you have figured out that my M.O. with these things is to complain about the meme in a funny way for a long time, and then comply with it.  Leave a girl her dignity and pretend you didn't notice, okay?)

Funny, OK, funny... holy crapola, batman, my mind is a total blank. Maybe it's the sleep deprivation... eight bloody years of one ASD early-riser coupled with an ADD late-to-bed insomniac yakking away at midnight have taken their toll.  My brain is not what it used to be, the steel trap has transformed into leaky sieve.

So many stories swirling round my brain... but this one has sparkled and caught my mind's eye:

My father passed away in mid March of this year.  Instead of holding a funeral at the time, we had him cremated (according to his wishes) and then, a few weeks later, we held a memorial gathering to celebrate his life and his work, and also the 93rd birthday he nearly made it to.  This was also according to his wishes, matching his upbeat, larger-than-life personality.  He wanted a festive gathering in his honor, he wanted a party, so we gave him one.

On March 28th, nearly a hundred family members and friends, residents and staff of the assisted living community where he and my mother lived gathered in the common room to celebrate my dad.  I needed for my kids to be there, to see family, to say goodbye to their Grandpa, to remind their sad, sad Grandma that life goes on.  But I was worried about Jacob and his ability to sit still and remain quiet while I gave the main eulogy at the start of the event.

Turns out I was worrying needlessly.  Jake sat right in front of me, next to my husband, and throughout my long eulogy he remained quiet as a mouse, not even a peep, his eyes trained on me the whole time.  I guess I gave quite a performance, because when I finished the crowd applauded (which embarassed me thoroughly).

Seeing all the people around him clapping for his mother, Jake joined in enthusiastically, then upped the ante by encouraging me with a shouted out: "Great job, Mom!"

A wave of laughter spread through the room, and it was just what we needed to start up the next part of the day: everyone sharing our funny stories and memories of Dad, including retelling all his favorite, awful, pun-filled jokes.  See?  Sometimes it's good to have someone who is completely unaware of the social rules with you, to shake things up a bit.

I was so proud of my son for his ability to find his calm listening space, and for showing his support for me so vocally at the end.  You, rocked, Jakey!  (Ethan, on the other hand, played his DS throughout the event, but I'm guessing that was his way of keeping the scary, sad feelings comfortably at bay.)

So now, come hop along with me....

Trying hard to be Hopeful again today

Well, the 10th snuck up on me this month, for the first time since I have become a regular Hopeful Parents blogger.

Knowing that my ADD makes deadlines hell, makes it hard for me to complete things, wreaks havoc with my sense of priorities and judgment (cough *executivefunctioningdysfunction* cough) I have deliberately, carefully, written my posts days, if not weeks ahead of time.  So important is this posting commitment to me, that I do not want to let them, you, me down. 

But this month?  The last week has made mincemeat out of me, culminating in my becoming swamped again by the care of an elderly dying relative. This time it’s my long lost Aunt Marilyn, my mom’s baby sister, in the hospital and in bad, bad shape.

So the 10th pounced on me today, and caught me with my usual long, over-thought, over-processed, deeply mulled post barely half written.  It was brilliant. 

But you’ll have to take my word on that, because you’re not going to find it there today.  Completing it under the shadow of a ticking clock was clearly not in the cards for me today, so I have chucked it aside (for now).

Having cast about for something, anything, to anchor my blog post to today, I have closed my eyes, poked my finger out, landed here, talking about the Special Needs Blog Hop, another manifestation of our wonderful special needs parenting community...

Come on over to Hopeful Parents now to read my post: Our Little Secret

I hope that you enjoy, and then meet me back here tomorrow to hop on the Special Needs Blog Hop with me.

Boing!

Wordless Wednesday: My Aunt Marilyn

Mom & Aunt Marilyn

Yesterday I wrote a post about bringing my mother to visit her baby sister, my Aunt Marilyn, who is in the hospital, possibly dying.

This 80 year-old, ravaged body once housed a beautiful young woman.

Her huge, deep, brown eyes have always been capable of piercing through to the soul.

Sorry it's not an adorable picture of my children this week, but this is my life right now.


I’m linking up to Wordless Wednesday at Angry Julie Monday.
I'm also linked to Special Exposure Wednesday at 5 Minutes for Special Needs.

Here We Go Again

I was going to call this post: "Old People Dying, Round 3" but realized that sounded a bit too... callous? direct? slightly deranged?  I am actually none of these things (well, maybe the deranged label fits a bit).

I am just... weary, resigned, engaging in a little gallows humor to lighten the load; sick of the dying and the caring for the dying, which seems to endlessly go on and on and on this year.

So, here we go again... and no, thank goodness, it is NOT my mother.  That much I could not take.  If it were my Mom this time I would not be blogging, I would be lying curled up in a fetal position on the floor blubbering away.

It is, however, my mother's (80 year-old) baby sister, my Aunt Marilyn.

Mom & her sister, my Aunt Marilyn

Haven't heard of her?  Not surprising, no one has.  My children have never heard of her, let alone met her.  My husband has heard of her, but again, they have never met.  I myself have not seen my Aunt in 8? 10? a dozen years?   Really, it was some time ago, I have lost the count, and then for quite a number of years we lost my Aunt.

And how and why could a family member get so lost?   Well, you see, for as long as I can remember Aunt Marilyn has been lost to herself, too, in one way or another.

Lost how?  Well, let's just say that when my cousins and I refer to her as "crazy Aunt Marilyn" we don't mean wild and fun.  And we're not being cruel, just realistic.  Aunt Marilyn is deeply mentally ill, and has been for as long as we have known her. 

Crazy / mentally ill how?  Good question.  Aunt Marilyn has had so many diagnoses in her long life, but the ones that seem to stick are some combination of severe bi-polar and paranoid schizophrenia.  She lost the family gene pool when it comes to brain chemistry.

My grandfather, her father, suffered in much the same way at the end of his life, the last 10 years of which he spent in a state mental institution. At the time psychiatry and diagnosis were not what they are now.  He was labeled with "severe depression due to hardening of the arteries", drugged up to the eyeballs, and died a ragged lonely man when I was seven.

For Marilyn, it's been a struggle most all of her life.  She held a job until 1968 or so, but that was only due to the kindness and generosity of her employer who treated her like family, put up with much mishegoss, and then, finally, couldn't any longer.

She was never homeless.  A rent controlled apartment was very helpful in that regard.  Although during a psychotic break, when she went missing for a week, she was found, finally, living in the bathroom at Penn Station with her life's savings in cash incredibly still stuffed into the pockets of her overcoat.  The radio that had been implanted in her head had told her to leave home, go there.

The fact that she has made it to this ripe old age is somewhat of a miracle.  A miracle combined with the fact that when she is being less crazy (she is never, truly sane, just more and less crazy) her core personality can actually shine through.  And Marilyn, the less crazy person?  Is all kinds of smart and funny, charming and wonderful, irresistible and charismatic.  Also, in her younger days?  Quite beautiful.

That's Marilyn on the left, with my Mother, Aunt Eva, Grandmother, Father, Uncle Walter.

So when she is being her somewhat saner self, Marilyn gets people to care about her, to help her, to take care of her... until she cracks wide open again and acerbically and emphatically pushes everyone away.  Paranoia manifested big and bold is no fun at all for anyone, deeply destructive of the self and shredding of all relationships; corrosive acid sprayed in all directions.

Which is why I haven't seen her in a dozen or so years.  My helping hand has been bitten too many times, I stopped stretching it out.  Same with my mother (although she has seen her more recently).  She would visit Marilyn, whether in her apartment (while she still had an apartment), or in the hospital (during one of her many psychiatric hospitalizations) bearing gifts aplenty.  A few visits would go well, and then the tide would turn, there would be accusations and bitter words, because nothing was ever enough for Marilyn, whatever you generously gave, you were accused of withholding all the rest.

There would be attacks, usually verbal, occasionally physical, and my mother would storm off, muttering "The hell with her!" under her breath, tears streaming down her eyes; wounded by and hurting for her beautiful baby sister who had come to this, become this wretched miserable creature.  And then some time would pass, sometimes months, sometimes years.  And it would start up again.

But age is not kind to the mentally ill, and in the past dozen or so years there have been very few periods of lucidity, and our last encounter ended quite horribly.  There was violence, we withdrew.  And Marilyn finally lost her apartment, entered into a series of nursing homes, and we lost track of her for a while.

But she is still family, so when my Uncle Walter, her big brother, called me Sunday night to tell me Marilyn was in the hospital and not doing well, and could I please tell my mother (his big sister) about this, and could we go see her and meet with her doctors?  Of course I said yes.

Coincidentally, I had been thinking about Marilyn a lot lately.  Jacob's new school is in her old neighborhood.  On the days when I pick him up, we sit and eat our snack in the square where she hung out, was a regular; one of those people settled in all comfortable on their own personal benches, one of those "crazies" that you avoid because their laugh is a little too close to a cackle, and maybe they don't smell so nice.  I've been thinking I should try to find her again, wondering if she were still alive, thinking my mom would be wanting to see her sister about now.  And then, Sunday, the call.

So today, after going to my mother's apartment and yet again "fixing" her "broken" TV ("Mom, you changed the input again -- just don't touch THAT button, OK?") bringing my mother to the audiologist to pick up her hearing aid (yay!) and having them program it ("Why is everything so loud now?") we headed over to the hospital to visit Marilyn.

I was acutely queasy as we walked down the long, long corridor to her room at the end of the ward, my dread growing with each slow step forward.  I knew she would be in terrible shape, aged well beyond her years by the hard life she had led.

I'd learned she had been hospitalized for a week, transferred from her current nursing home to the ICU with a raging, life threatening UTI gone septic.  Infection vanquished, she had remained nearly catatonic, refusing to speak, refusing to eat.  Feeding tubes had been put in and were quickly pulled out, rejected.  She wanted to be left alone.  She wanted to die.

We tiptoed into the room, she was indeed looking ragged.  My mother started to pass the first bed, head toward the next when I stopped her, recognizing a familiar shape of nose.  Asleep when we arrived, I touched her arm to awaken her.  She stared, startled, but recognized us.  Behind her large eyes, now sunken, the piercing intelligence that has always been there peered out, missing nothing.  "Is it cold out?" she asked, noticing our down coats piled on the chair.  Her voice was a horse whisper, speech slurred by a complete lack of teeth.

We told her we had lost her, but that now found we were here to stay in her life.  We took turns holding her hand, stroking her arm.  I showed her pictures of my boys.  My mother shared with her the death of my father, her brother-in-law. 

She was clearly glad to see us.  But when lunch came she still refused to eat, set in her determination to be done with it all.  Or maybe the senior dementia has overtaken her everyday crazy and she has forgotten how to eat.  Or maybe she thought they were trying to poison her.  In any event, the outcome will be the same, soon.

It was, by necessity, a short visit (I had to return home to retrieve a child) but we reassured her we would be back within a few days.  Her eyes followed us out of the room.  Her doctor arrived just as we were leaving, hurried words exchanged, my promise to return the next day extracted.

Sometime soon I will tell more tales of my Aunt Marilyn, of the years of my childhood when she was a regular part of my life, when the "crazy" referenced more of the zany and wacky, the youthful and fun aspects of her personality, and less of the truly meshuggina. 

Marilyn, my Dad, my Grandma, cousins Annette & Jessie (with cello) & Me

Believe it or not, in our family "Crazy Aunt Marilyn" is a term of affection, of acceptance.  It's just who she is.  And we have always loved her, even in absence, even though when around she often drove us... crazy.

Tomorrow I will meet with her "team" at the hospital and we will decide how to move her into palliative, hospice care; how to prepare for her ending.  Tomorrow we will plan for the final days of a life that unraveled a long time ago, a life that has been hanging in lonely, stringy tatters for oh, so long.

Tomorrow I will again hold the hand of my childlike, wizened Aunt, as she turns her piercing gaze upon me.  Tomorrow I will look back through the tunnel of time to see before me the beautiful girl with the big dark eyes who wanted to be a dancer, my mother's baby sister, my "Crazy Aunt", Marilyn.
 
Update: My Aunt actually rallied, did not die, began to accept some nutrients, she will still eat no solid food, but will drink juice and milkshakes.  She has since moved back to a nursing home, although she cycles in and out of the hospital every few weeks with some minor crisis. My mother and I visit her regularly, and although she never speaks more than a few words to us, is still deep in her dementia, she knows we are there and it means so much to her.