Monday Listicles: Inside my Brain

 
Yes, I know today is Tuesday. But since I fell asleep on the sofa (upright and lightly drooling, yes) before I could finish my Sunday evening post and had to put it up on Monday, this one has had to move on down the line. Welcome to my life.

I guess that could be another YouMightBeAnAutismParentIf tweet: "#YouMightBeAnAutismParentIf you put up all your blog posts a day late so it's SOC Sundays on Monday and Monday Listicles on Tuesday" (And Wordless Wednesdays on Thursday and Alphabe-Thursdays on Friday and Special Needs Sibling Saturdays on Sunday... and yes I've been guilty of ALL of these late postings!)

Anyway, I'm posting this just after midnight, on American East Coast time, which means it's certainly still Monday somewhere... California, for example. So, on a technicality, I'm not REALLY late.

OK, enough meta-jabber. I rest my case. On to the actual post...

This week’s Listicle assignment (from Bridget of Twinisms via Stasha at The Good Life) is based on the show "Inside The Actor’s Studio With James Lipton."

You’ve seen this program, yes? Every celebrity interview ends with the same 10 questions, which I will attempt to answer, now:

1. What is your favorite word?
You're kidding right? ONE favorite word? Ain't gonna happen from wordy, word-loving me. Like I tell my kids: I don't have just one favorite. (And yeah, I'm gonna start this list being all contrary, oppositional and rule-bashing again. Wanna make something of it?) But on my short list, you'd find: smorgasbord, chartreuse, ungepatchket, and fractious.

2. What is your least favorite word?
Retard or Retarded. And if you don't know why I hate this, the "R-word," you're probably at the wrong blog, here by accident. If you want a refresher, read my friend Ellen's posts all about it. Start with this one: If you ask people not to use the word "retard" then plug in the R-word into her search box and read everything that comes up.  

3. What turns you on?
Intelligence, humor, kindness.

4. What turns you off? 
Willful ignorance and cold-heartedness. Also black socks and white sneakers with Bermuda shorts.

5. What sound do you love?
An ocean beach. Also? Truthfully? My own voice. (Hangs head.)

6. What sound do you hate?
Metal scraping on metal. If you use a metal fork to eat out of a metal bowl I will be forced to make you stop by any and all means necessary. It's like nails on a chalkboard to me. Also, not coincidentally, nails on a chalkboard.

7. What is your favorite curse word?
Really, it's a toss up between motherfucker and bullshit. I guess I like compound words. Ethan is studying them in school right now. But never fear, I'm not going to suggest THESE for his "Write 10 juicy sentences using compound words" assignment.

8. What profession other than yours would you like to attempt? 
Brain surgeon. *Kidding!* But seriously, neuroscience interests me greatly, the biology of how we think and feel. I could have gone into medicine, have a great affinity for it. In other words, my mother was right - I shoulda been a doctor!

9. What profession would you not like to do?
The thought of accountancy fills me with dread. And I like numbers. I just hate paperwork.

10. If heaven exists, what would you like to hear God say when you arrive at the pearly gates?
A variation of what my husband quipped when first we met: "Oh, sorry, I got you confused with (renowned French filmmaker) Agnès Varda... Your number's not up yet, back you go!"


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Ass Forwards Days

Jacob has put his underwear on backwards again this morning. It doesn’t happen often anymore, but still, occasionally I will come into the living room prompted by Jake’s “I’m dressed Mommy!” shout-out, to find them on the wrong way.

Then, like this morning, I have to tell him “No, Jake, they’re backwards, let’s get that fixed” and not just the usual “That’s a good start, Jake, how about the shirt and pants, too?”

And it reminded me of last Thanksgiving when I had watched my husband squirming a bit too much in his seat on the way-long car ride up to Putnam county where we were to be feasting at my sister-in-law’s house.

I asked him why he was acting like he has shpilkes and he confessed that HE had put his underwear on backwards that morning, and they were a bit shy of comfortable. He hadn’t noticed until he was taking a quick final pee before setting out. And, as we were running late (as usual), he hadn't wanted to take the time to remove his shoes, get undressed and redressed again.

And I had to laugh. I had thought the whole backwards underwear thing was a factor of Jake's autistic distractedness, I hadn’t realized it was a family tradition.

And, because I never let an opportunity to gently tease my husband go to waste, all day long I kept referring to his awesomely ass forward undershorts. It helped to have a joke running, to undercut the sad that ran through the day on that Thanksgiving, in that shitty year of loss, the first without my father and Dan's mother.

I also took the occasion this morning to notice how tight Jake’s size 10 to 12 underpants are becoming, same as nearly all his clothing. Time soon for my still nine year-old son, my gentle giant, to move up to the next, full-on teenager's size.

I look at Jacob now and so often see parts of my husband's face looking back at me. I did not know Dan as a child, or even a young man; we met when we were shuffling into middle age, and have well grown deeper grizzled in the thirteen years we have been together.

But in the photos of his childhood I see Jacob, as Ethan so recapitulates my youthful visage. Uncanny really, how one is nearly all mine, the other his.

This morning once again watching my son dressing, eating, drawing yet another picture of his beloved Dragon Ball Z Kai characters, I see shades of the teen he is on the precipice of becoming, the man's body he will inhabit in the fast blink of an eye.

This manly illusion broken by his lilting voice: "Mommy can I pet Cocoa now?" His mind and spirit clearly remain so firmly still in the grasp of childhood, of autism; his obsession with the family cat waxing not waning.

"Cocoa, you're my best friend" he tells her, as he hugs her goodbye for the day. And it's true. She is. And I don't let him see the tears that well in my eyes as we don coats, trudge outside in the semi-darkness to await his school bus.

Thankfully they are gone by the time I sweep my hand across his cheek, kissing his tousled head while intoning my daily admonishment: "Listen to your teachers, work hard, no growling in school!"

I start to walk back inside, and then I turn; I turn and wave.

I wave at the darkened windows of the bus, knowing that inside sits my sweet, gentle giant.

My Jacob.

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G is for Goodbye, Willie

G is for Goodbye, Willie.

I am writing this while sitting at the ASPCA, waiting for our number to come up, to walk through those steel doors, to put my 88 year-old mother's 19 year-old cat to "sleep."

How I hate that euphemism. (Plus, remind me NEVER to use this expression around the boys or they may never sleep again.) But to say "death" is still just too harsh. And "down"? Too ambiguous. But maybe that's best.

The technical term "to be euthanized"? Too many shivers down my spine, images of Hitler's death wagons coming for people like my son to let that word trip off my tongue lightly.

But really, all this theorizing about language is the distractor isn't it? To keep me from thinking too much about the next few minutes; about walking Willie through that door.

Because I have already asked for the box of Kleenex, dripping snotty tears all over the poor reception clerk's desk as I filled out the forms that will make this come to pass, today.

Mom & Willie, June 1, 2011

I am writing this sitting in a hard wooden chair in a small room, redolent of bleach, with a raised steel table at the center. Lovely photographs of wild animals hang on the walls, I'm sure meant to soothe; to establish that this place is all about the animals.

But really, don't you think it's kind of cruel in this place emblematic of our ultimate control over our domestic pets' lives to taunt them with images from their ancestral memory, when their great, great (to the hundredth power) grandmothers were once wild and free?

I see owls and does, wolves and tigers all around me.

And this one little tiger, William "Tyger" Blake, alternately panting and wild eyed or serenely resigned and calm, waiting, contained, in the carrier beside me.

And in spite of the many pounds lost, the ravages of old age and kidney disease upon his once solid frame, his ribs countable, his fur clumped and patchy, he is still rubbing his large, now quite angular head against the fingers I snake through the bars of his cage to offer what little comfort I may in this strange place that smells of dogs and fear.

The veterinarian and technician finally enter the room, are lovely young women, kind and clearly compassionate. They reassure, tell me we're doing the right thing; rattle off the ways Willie's body is failing him, confirm he is on the brink of heavy suffering and that this is the just right time to do this, when the scales of pleasure and pain in his life are about to tip straight down into nightmare.

"You have loved him much, and are saving him needless suffering," they say.  And: "It's truly time."

And so, it was time.

An anesthetic held his body still while I pet him one last time, recalled to the gentle vet how handsome Willie was in his glory, the now matted fur sleek and full, the most glorious bushy tail I'd ever seen on a cat held regal and high.

I kissed the top of his head one last goodbye, waited for her to push the plunger with the final, heart stopping drug...

And then?

My damn cellphone rang.

Caretaker of so many, I had to glance over, and then, holding up my hand, requested a halt for a moment. It was the the driver of my autistic son Jacob's school bus. It seems the bus had broken down in the extreme heat and humidity while still downtown, miles from my home.

(People? You just can't make this shit up. It would be way too cliche: the phone ringing as the vet pulls back the plunger, just like in all those death row movies, the governor calling at the zero hour with a stay of execution.

But this is my real life. And there's a reason I called my blog "The Squashed Bologna": I am the meat flattened in the middle of the sandwich. I honestly earn my bloggy nickname and Twitter handle "SquashedMom" nearly every day.)

It was hard to get the details clear from Jake's driver. She's a lovely woman but with a thick Spanish accent, much more understandable in person than through the filter of cell to cell telephony. While we worked out the plan to get him picked up, the vet was growing impatient, worried the sedative was wearing off and Willie would begin to stir.

So I hung up on the bus driver, crossed my fingers that she had understood my intent to send a babysitter to get Jake rather than wait the possibly two hours it will take the bus company to get a new bus into position, and jumped back to the steel table of death.

And then? Quickly, so quickly, it is done. One last kiss, one last tear dripped upon his still warm but now lifeless body. The vet picked him up, cradled him lovingly as she carried him from the room.

And out I went, to wheel an empty carrier home to my mother in the sweltering heat. To tell my mother it is over. To take her to her doctor's appointment, the follow-up from last week's hospitalization, where we will at last have good news. And during which my missing-me son and my currently-in-Milan husband will call my cell phone simultaneously while the doctor is still talking to me.

Squashed. Always.

Willie was a vastly handsome, but an aloof, cat-like cat. He interacted with humans on his terms only, choosing to sit upon a lap or not according to his own arcane rules or whims. This earned him the affectionate sobriquet 'Willie, you mamzer" from my Mother.

But since my father's passing last March? Willie has stepped up to the plate, kept on knocking them out of the ballpark. He talked to Mom all day long, sat near and on her constantly, slept on Dad's side of the bed beside her, a smaller weight for sure, but comfort, nonetheless.

Now gone.

Willie's small furry absence will ring loudly, echoing the much larger one that looms over all, in my mother's life. His ashes, once claimed, will sit in their own little box, next to my father's, on their bookcase shelf.

My mother misses my father fiercely, still, every day in every way. They had a true partnership, a deep friendship; were mates, through and through. (We should all be so lucky.)

Now gone.

But never forgotten.

Someday soon I will walk into my mother's apartment bearing a sweet orange tiger, someone's beloved kitty that they just could not keep.  They will regard each other warily for a few minutes, then a head will be stroked, a paw extended, a lap occupied; purring will begin.

Embers will beget sparks, and the flames of love will start to dance anew in hearts once bereft and sundered.

Goodbye, Willie. You were a good cat, much beloved. You will be deeply missed. Rest in peace (and catnip).  
 

This post has been inspired by and linked up to Jenny Matlock's Alphabe-Thursday writing meme. I believe that G is also for Gah! Get me through this week! (Holding my breath to see what ripe new disaster is headed our way.)

I'm also linking this post up to Shell's Pour Your Heart Out linky at Things I Can't Say


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13 Things to Do in the ER for 30 Hours

I had all kinds of plans and ambitions for my life and blog this Monday and Tuesday, which all came to naught because of one of *THOSE* phone calls I received Monday, early afternoon.  A classic "your mother isn't feeling well and we think she should be seen by a doctor right away" phone call.

So out went the Book Expo 11 plans, including a tea party at Random House with the fabulous Lisa See. Out went my Red Dress Club  RemembeRED memoir post.

In came the grueling grind: sleep deprivation and worry and tedium and adrenaline and annoyance and rage and acceptance and stupor and... a lot of sour lemons. So I made the bloggers version of lemonade: whipped up a post about it.

It is now late late Tuesday night, and my mother has FINALLY been admitted to a proper bed in a proper room on the appropriate ward. I wrote this post Monday night between midnight and about 3 AM, typing with my thumbs on my little no-keyboard Droid cellphone. That I still had functional thumbs today? Nothing short of miraculous.

So without further ado, I bring you:

13 Things to do in the ER while waiting with your 88 year-old mother for them to find her a bed and move her the hell upstairs:

1.  Eat 2 packs of peanut M&Ms for dinner. (What? Like you've never experienced vending machine cuisine at its finest?)

2.  Read The New Yorker you brought with you cover to cover, even the articles about obscure sports figures you don't care about and the reviews of movies you were never planning to see in the 1st place.

3.  Feel inordinately proud of yourself that you managed to snag, vulture-like, from the patient vacating the berth next door: the pillow your mother's head is dizzily resting upon and the hard, narrow, plastic chair that is currently causing you a literal pain in the butt. As there are so very few of these rare and valuable commodities in the insanely overcrowded ER, you had to consciously restrain yourself from performing a fist pump of victory upon their procurement.

4.  Calling overcooked fish, white rice & soggy mixed veggies "a meal" and pouncing upon it with your mother when it arrives at 8 pm after 6 foodless hours spent in the ER.  (Also? Feeling like a genius for re-purposing the "real lemon juice" packets provided with the tea to make the fish vaguely palatable.)  

5.  Wish you could shut your ears and not hear, the same way you can close your eyes and not see, so as to not have to listen to the 15 minutes of crying, screaming, wailing, cursing, gurgling and pleading going on in the curtained bay next to yours as a young woman has "about a gallon of pus" surgically drained from abscesses in her jaw. Realize how many doctors really do have impatience with, and markedly little empathy for patient's pain. (Be incredibly grateful for the amazing man who is your mother's - and was your father's - eminently patient & empathetic cardiologist. A menschier doctor does not exist.)

6.  Try to hold the lockless stall door closed by sheer will as you pee as quickly as female-humanly possible in the filthy visitor bathroom that you had been hoping not to encounter, but just couldn't hold it in any longer.

7.  Tie the undone shoelaces of the incredibly adorable 3 year old girl who has sidled up to you in the outer waiting room and tapped you on the knee to request assistance with said task, while her bedraggled mother simultaneously tries to fill out paperwork & calm her screaming, ill infant. Give up on trying to answer an urgent email and play with this sweet child for the last 5 minutes of your 10 minute "plugged-in" break from the inner ER electronic blackout zone. Return to your mother with a smile on your face.

8.  Try not to cry, yourself, as you (expecting tears and howls) break the news to your autistic son that you will NOT be home to put him to bed as you had PROMISED him you would be this morning, kissing him goodbye at the school bus door. Be surprised and thankful for his calmness, but even more wrenched by his brave little "OK, mommy I'll see you in the morning." Pray they find a bed for your Mom before 5 AM so as to make THAT one true. (They didn't.)

9.  Listen in to the weary mother of the young man in the next-door berth to the other side as she explains to the hospital security guard for the 10th time why she cannot leave for the standard shift-change visitor clearing protocol, as her non-verbal, seizure-prone, mentality challenged son would be completely lost and unable to communicate without her by his side. Try very hard not to start thinking about how life will be if Jacob still has significant communications problems when he is a man, no longer a child, and my presence by his side will be constantly questioned, his disability invisible.

10.  Be eternally grateful it's just an "ordinary" busy Monday and so we're not being "entertained" by one of the loud, drunk/high, belligerent & yet also inappropriately amorous couples who always manage to show up in the ER on Saturday nights. (I had enough of THOSE on my train ride from Boston to Lowell two weeks ago.)

11.  Laugh when your Mom loudly contemplates what she can possibly lift from the stocked supply shelves you pass, walking her to the one non-filthy patient bathroom on the far side of the ER. Make her laugh as you invent imaginary uses for the pink bedpan you assume she plans on stealing.  Look the other way as she nicks a mini tissue box: "It''s such a convenient size!"

12.  Try not to think about why you know this ER like the back of your hand, can find your way through the catacombed passageways of this hospital's lower corridors like a resident, pushing back against the tide of memories of your father spending much time and mother-in-law dying in the selfsame ward they are seeking to place your mother in, tonight.

13. Two words: angry birds. Two less fun words: dead battery. Two even less fun words: puking toddler. (And yes, a hurling pediatric patient missed my feet by inches today when my Mom was in triage. But it was sweet to hear him say afterward: "I feew bedda now" to the surprised nurse.)

And? that's all folks. Wish us luck!

@@@@@@@

Well, we finally got the luck... some 30 HOURS late.  Much more hilarity ensued, more stories to tell... another night. 

Now? TO BED.


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Search Me

Searching for a little levity today, I thought I would list some of the web searches that have, rightly or wrongly, driven people to my blog. Thank you, Google, for this:

"pokemon with a generalized anxiety disorder" (guilty as charged)

"allie brosh and stalking" (Just for the record, let me make this clear... I have NEVER stalked Allie Brosh. In fact, *she* stalks me. Yeah. Right. OK, well, maybe just a little stalking... but only cyber-)

"beyblade cake" (probably this July, that's what I'll be making)

"sandwich generation angst" (Oh, yeah, we got that! Also? On first page for this one on Google Search. YAY!)

"jokes about the sandwich generation" (a few, if you consider my quips about my Dad about to lose his toes "jokes." I'm generally funnier about my kids.)

"jacob is a poopy head" (No, no, Jacob sings "Ethan is a poopyhead!" and "Twinkle, twinkle, little poopyhead." Can't they get anything right?)

"bologna and autism" (Nothing to add to this. Except, yes, Jacob does eat bologna. Organic turkey bologna. I don't *think* it has anything to do with his autism.)

"everyday is autism awareness day in my world" (mine, too!)

"good sandwich based on gems" (Hope they weren't too disappointed. Guessing my "Blog Gems" post triggered this. Also?  Wouldn't that be a bit too... crunchy?)

"autism mom blog" (Biggest "Duh" on the planet)

"confessions from the sandwich generation" (Not so much confessing as whining, bitching and moaning, but I'll take it.)

"bologna odor in walls" (Guessing if they truly needed help with that they didn't stay long. Also? Eeeeew!)

"origin of because y is a crooked letter" (Yeah, I wrote a post about that, my Grandmother's favorite saying. Well, actually it's a toss-up between that and "put your tuchis on the table")

"do autistic children like chuck e cheese" (Mine does, but he is a sensory seeker. But for a sensory avoider? Let's put it this way... the first time we walked into a Chuck E Cheese my husband turned to me and said: "This is where we'll go when we die if we've been VERY, VERY bad." And he's not even autistic, just a man who likes a bit of calm and quiet.)

"spring is here and i can't wait for summer get along with friends" (good luck with THAT)

"how to include typical siblings in special needs childrens lives" (When you come up with the answer, would you please come back and share it with me?)

"ironman childrens regalia" (yes, Jake has gone there)

"sweaty girls" (needless to say this person was very disappointed)

"coppertone" (Yup, wrote one on that!)

"coppertone ass" (Nope, did NOT write one on THAT!)

"autism mom" (Me, me, me, me!)

"why different pronunciation of bologna city and meat"(You know I've been wondering a bit about that myself, but actually don't really care as long as you pronounce MY blog name right.)

"momsomnia" (Don't think I was the first one to coin it, but I amused myself when I came up with this word. Became less amusing as I found need to use it a lot.)

"thoughts for my son" (every day in every way)

"want to get direction in my life" (Oh, man, so do I, so do I. Sorry I'm not gonna be much help here.)

"world laughter day parties" (I LOVE this. Wish I were at one.)

"not allowed to be sick" (definition of a Mom)

"my parents are getting old" (In my case? Not so much the getting, more the "are" - or "were" in the case of my Dad.)

"life with jake, autism blog" (Yes, that's us. Also? There are a LOT of Jakes out there, so maybe we weren't the one you were looking for, but I hope you pulled up a chair and stayed a while anyway.)

"sibling rivalry good or bad" (Yes.)

"special needs parents, parallel lives" (Well, there's -unfortunately- a lot of us out there. Don't know if you found your parallels here, but hope you found something relatable.)

"ethan sharer" (Sometimes. Others it's Ethan: hoarder, but we're working on that.)

"television is a drug" (They were probably looking for the video of my friend Todd Alcott's monologue, but since I embedded that in my post, they got the 2 for 1 deal.) 

"autism growing older" (It sure is getting old around these parts. Or maybe they meant autistic kids getting older. Wrote about that, too.)

"homework wars" (Been there, done that. Both boys. Wish we weren't in the trenches.)

"mayday mayday" (Yep, I put out that call a few weeks ago. Of course if they were really on a ship going down, my post wouldn't have been much help to them. Of course if they were really on a ship going down why would they be wasting time Googling shit, anyway?)

"he really needed to pee" (Did I mentions I have boys? Boys who often get too distracted to... take care of business in a timely fashion, and so aim is not their top priority when doing so? Have I mentioned that in spite of spending at least a half hour each day cleaning around our ONE toilet, it STILL usually smells like a Parisian alley in our ONE bathroom?)

"autistic little boys love their moms" (That they surely do, yes!)

And? That's all folks!

But also (because when do I ever really shut up that easy) I want to give credit where credit is due.. .

I had been mulling over doing a post like this for a while, and had already gathered quite a few of the more interesting search terms people had googled to find me when Spectrummy Mummy wrote HER post about the same, "Googled."

She inspired me to get this damn post finished and up. Also? Her post is fun and worth the read too, so go over and do so.

Plus? Come closer, let me tell you a secret...  she's my SNSS guest poster this upcoming Saturday.  So now you are in the know. It's a completely lovely post, and I can't wait to share it with you.

And now? That's really all.



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Return to Prydain, Triumphant

Ethan, in his reading, is a creature of habit.  He likes series; long, long series, so there will be no unsettling surprises.  I read a lot of Magic Treehouse books to him when he was younger.  This fall he's just chomped his way through the entire My Weird School and My Weird School Daze series of humor novels.

The other evening, wailing that he had "nothing to read" in spite of overflowing bookshelves, I gingerly pulled out a book with trepidation... was he ready?  Wasn't he?  Because this was a special book, much beloved from my childhood.  And not just the story, but the actual book, a paperback survived these 42 years.

The book?  "The Book of Three" by Lloyd Alexander.

The first book in his wonderful, award winning five part fantasy tale, inspired by Welsh mythology (oh, those names with the double "Ff"s and "Gwy"s); a time of enchantments and ancient kings, swords and barrows.  Ethan has been loving the Deltora Quest fantasy TV show and books.  We have lived in the magical world of the Last Airbender for a while now (the books and the wonderful TV show, not the goofy movie).  So maybe, maybe...

My 1969 copy of the book

The cover and the pages have yellowed, but not crumbled.  Ethan was astonished by the cover price: 75 cents (how times have changed, my computer keyboard doesn't even have the little strike-out "c" symbol to render that properly).

But Ethan was suspicious; the book was an unknown entity.  Ignoring him, I picked it up and forged ahead, using my sneak attack maneuver: starting to read out loud while he was seemingly distracted by something else (in this case drawing).  It worked.  Two pages in, he came over and snuggled up against me, rapt.

When I got to the end of the first chapter and went to put it down, he begged me not to stop. "This is too good, Mom, we can't stop here."  And that's when the trap is sprung, "I have to do a few things before bedtime, honey, but you can read the next chapter by yourself if you want."  And he did.

So now, every night for the past three nights we have read two or three chapters.  I read one or two out loud, he reads one or two to himself.  He talks and conjectures about the characters, questions their futures. He pesters me to tell him the secrets, to answer the deep mysteries that are revealed only at the very end.

He howls at my reply: "You'll have to keep reading to find that one out," is placated by the one or two bones I toss him to keep him from dying of curiosity.

And tonight Ethan uttered the words that made my book-loving mother's heart melt anew: "Mom, I love this book."

I am kvelling.  I am over the moon.  The fact that I was exactly Ethan's age when I first read this book?  As thrilling to him as to me. 

For you see, I am a reader, I have been all my life.  Books have been my dearest friends since I was a young child.  And the Prydain series?  My very best friend for many years.

How many times I read these books over and over as a child I could not count.  There is something that deeply captivated me about them, the stories full of large and small perfect moments, the characters richly nuanced.  Watching Taran mature and grow from a feckless youth to a young man, wise and capable of leadership, still stirs my soul.

I always imagined sharing these books with a child of mine someday.  And that day is finally today, and my heart is fluttering.  This is a moment made ever more sweet and precious because for a long time I wasn't sure we would ever get here.

Because Ethan, while like me in many ways, is also clearly not me, made little.  He did not come to reading with joy in his heart.  He is a child of the age of electronics, a computer game kid.  And when he was learning to read at 5?  He declared reading and books "boring."  Way to stab an ice pick into your book-loving mom's heart, kidddo!

It was hard to find the right book to hook him with, a gateway book, as it were, but I worked at it, patiently (don't laugh, I can be patient when I need to).  A lot of trial and error, me holding my peace when books I thought would be a bit hit were declared "stupid" "boring" "girly" "babyish" "scary" and otherwise rejected.

We finally found a few that he liked, such as Louis Sachar's wonderful Sideways Stories from Wayside School books and proceeded from there.

Ethan reading a Wayside School book, summer 2009

Remember, I had a deeply hidden agenda in my back pocket: there were those books from my childhood that had meant so much to me, that I had hoped to someday share at least some of with my children.

Having only boys, and in particular a boy who (my best feminist intentions to the contrary) despised all things deemed "girly," I realized it was unlikely we were going to be visiting my well loved Little House on the Prairie or All-of-a-Kind Family series together.  Island of the Blue Dolphins?  Not likely either.

But a visit to Prydain, Ursula LeGuin's Earthsea?  Maybe... probably... oh YES!

And?  The next "hold my breath" beloved yet boy-friendly childhood book? A Wrinkle in Time.  Mrs Whatsit, Mrs Who, Mrs Which, chill your jets a little bit longer.  All signs are pointing in the right direction, we're coming soon.

Disclosure: I am an Amazon Associate.  If you click on any of the hotlinks to buy a book, I will receive a (very) small percentage from this purchase.

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I've Got Stones

Gall Stones, that is.

What?  You thought I was talking about my Mom-balls again?

Yeah, I've got those, too.  Just try to take away a vital service from my autistic son, Jacob.  Mess with him and you will see my giant huevos come out, big time.

I mean, even though my *actual* eggs are kind of over-cooked at this point (see my last post), my metaphorical ones?  My "don't mess with my family" ones?

Outsize and ready for action.

But about that other thing?  Yeah, I'd really like to pretend this isn't happening.

But doubling over in slicing, cramped pain and then making a mad dash to the women's room to gag and dry heave for 10 minutes during my son's basketball practice on Saturday sorta makes that impossible.

I cannot say enough about how happy I am to have the good fortune to have actual medical professionals in my family, both natal and the machatunim.  (That's Yiddish for the whole {damned} family you marry into - you know, the in-laws.)

I had already self diagnosed via the friendly internet on Saturday night.  When I was finally able to stop moaning and sit upright, that is.

But you know?  The internet?  Scary place to do medical research.  Reminds me of that old Nicole Hollander cartoon, the one where Sylvia is reading a book called "Infectious Diseases."  As her daughter warns her to put the book down, she yells out "Oh my god, I've got anthrax!"

In spite of the chance to just completely terrify myself, I kept a mostly level head.

But the problem with hot-knife style searing pain of mind bending proportions in the area of one's major organs?  Hard to believe it's no biggie, not connected to a serious condition requiring immediate medical attention.

But a nice chat with my lovely ER doc cousin, Jessie, in Vermont reassured me that had I come into her ER, she would have been all "Crap! Why is this person in my ER?  It's just a gall bladder attack, nothing dangerous. I had to wake up from my nap for THIS?" (She often works the overnight shift.)

She told me to see my doctor on Monday, went over the warning signs that should send me rushing to the ER for real, and gave me advice for how to get myself comfortable in the meantime (antacid, Tylenol, rest, duh).

And the next day I felt mostly better, which was a mighty good thing, it being the Sunday of my husband's family's annual Big Chanukkah Party.  (I know, not technically Chanukkah anymore.  But?  Shhhhhhh.  It was so early this year.)

What?  You want to see pictures of that?  OK here's a few:

Lighting Grandma Blanche's menorah

Presents Galore!

Grandma Sylvia got a zhu zhu pet

And at this bash?  Yes, indeed, I sidled up to Danny's cousin who happens to be a G.I. with that "you are about to be cornered by a relative with a medical question" look on my face, and he did not back off and disappear, which I took to be the go-ahead sign.  (If you're confused here?  Folks, we're Jewish.  To us "G.I." is short for Gastro-Intestinal as in a doctor's specialist degree, NOT Government Issue as in "G.I. Joe".  Please!)

So I asked cousin David, "Do you do Gall Bladder?"  And he gestured for me to continue.

I described my symptoms, and when I got to the part about the pain finally localizing in the upper right quadrant of my abdomen and then radiating to my back under my shoulder blade, he nodded.  Then he poked at a spot and I yelped and he said to call his office at 8:30 the next morning and they'd get me in right away.

Oh yes, I married into the right family!

So all this is how, yesterday, I came to have my first complete and thorough physical exam in... maybe 10 years?

The problem with being essentially healthy and taking care of multiple elderly parents and young kids with all sorts of issues is that you can neglect your own health big time.  (I *might* have done that.)

Until there's a big wake-up call.  Like, oh, feeling like you're being sliced in half by a ninja out of the clear blue at 2:45 on a Saturday afternoon while your autistic son is attempting to play basketball.

What?  You want to know how the basketball is going?

Yes, I did share my excitement about it, and planned to report back right away.   But life got... busy, you know?

Briefly: it's going well-ish.  (A full post account is coming up soon, I sort-of promise.)  Here, look at some cute pictures (sorry about the odd color, there's weird yellow lights in that gym):

One excited boy

Playing basketball, sort of

So, back to my foray into all things medical yesterday... having been a basically healthy person for 50 years (and believe me, I know how blessedly lucky I am about this, am grateful & do not take it for granted) my experience with medical procedures has been mostly on the sidelines.

Let me tell you, there was a more than slightly surreal quality to be personally undergoing the same diagnostic procedures that I had sat through countless times as the support person for a parent or friend.

Like deja-vu with a side-step.  Like in those dreams when your point of view flashes back and forth between a first and third person perspective, leaving you wondering if you are watching or experiencing the events at hand.

To be the one in the ugly, ill-fitting gown on the table myself?  Very, very weird.

What?  You want pictures of that, too?  Well, here's me waiting for someone to come into the room and do something to me:  

Beige is so NOT my color

So I've now had my first echocardiogram, folks.  And you young people with healthy hearts who have never had to care for someone with cardiac troubles will not get what a big deal this is.  But if you're on my side of the fence, you will understand the thrill, and why I'm bragging:

My ejection fraction?  Was terrific.  (The "ejection fraction" is a measurement of the heart's efficiency at pumping blood, and is severely compromised in Aortic Stenosis, the condition that did my father in.)

I jumped with joy.  (Well, I would have if I weren't laying on a table covered in yucky ultrasound goop.) 

Considering that I am essentially allergic to exercise?   I have no right to have a heart as healthy as mine appears to be.  And I am NOT going to take this for granted.  I am going to thank my lucky stars and work from here on outward to not let this good start turn sour through inactivity and complacency.

I am a 50 year old with young children. I need to do all I can to ensure I am here to care for them through their formative years, to do all that is within my power to not abandon them too young.  (Please hold me to this.  Yell at me if I don't start to take better care of myself in the future.)

I am guessing I have my love of dancing to thank for the positive state of things.  Those years of my late teens through mid-twenties when I went out dancing with wild abandon two or three nights a week.

And the way I danced?  Way aerobic.  I would work up quite a sweat.  Hell, I would often sweat completely through and thoroughly soak my clothes.   Looking back it's a wonder anyone ever dared go home with me afterward, sweatball that I was.

Although it must have helped that, as an old boyfriend put it, I "danced like a girl who likes to fuck."  Ahem.  Guess I wasn't afraid to move my hips.

Sigh.  It's nice thinking about a time when my body was more about pleasure than pain.

But getting back to the icky medical stuff.  I ended my day at the imaging center I had taken my father to many a time before.  Once again, the odd disconnect of shifted perspective.

"You've been a patient here before?"  The receptionist asked the question as a not-question, rhetorical. Clearly I looked familiar.  She thought I was a returner, a repeat customer.

"No" I answer.  Then, because she has raised her eyebrow sceptically I start to question it myself.  "I don't think so..." I stammeringly add, "I've been here so many times, but I'm pretty sure that it was always to bring my father in."

"Well, let's check, then" she says, inputting my statistics into the computer, which spits back... nothing. First timer.  Fill out the thousand forms and bring back the clipboard.

The technician is friendly, chatty, and I don't mind.  Gowned and gelled yet again, I am lying on the table when she swings the monitor around to show me: a solid white almond shaped nugget in the black hole that is my ultrasound gall bladder.  "Stone" she says.

Well, at least I wasn't imagining things.

"Is it a big one?" I ask, watching this thing taking up a good quarter of my gall bladder float around like an jumbo olive in a small martini glass.

"Oh, yeah, I would say that. The good thing is, it's too big to pass through the duct."

"That's a good thing?"

"Yeah, better than the granules, they really hurt going through."

OK, I'm happy to just take her word on that.

So now we wait on the blood-work, schedule another test in a few days (they're going to make my blood a teensy bit radioactive), and then?   Review the findings and evaluate my options.

Apparently, wave a magic wand and make it all go away?  Not among them.  Damn!

I may have a date with a laproscopic surgeon in my near future.  We may wait and see.

And if I do end up having my Gall Bladder removed?  Here's to hoping the guy doing it looks just like Weird Al Yankovic in his classic "Like a Surgeon" video.

Because I want to go under the knife laughing.

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Wordless Wednesday: Happy Chanukkah

For once I am going to let the pictures mostly speak for themselves on Wordless Wednesday.

On Sunday we had a small gathering of kids and their parents in our apartment for a little Chanukkah party.  Latkes and jelly donuts were noshed upon, menorah lit and dreidels spun.  Much chocolate Channukah gelt was consumed by children (large and small).

Me and my mom

The perfect combo: boys, computers and chocolate Chanukkah gelt

Jacob and Grandma Syl on Chanukkah

Ethan and Grandma Syl on Chanukkah

Tonight is the 8th and last night of Chanukkah.  It is the festival of lights, and I wish each and every one of you a full menorah; a bright, warm, and happy holiday season.  L'Chaim.


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.

Looking for  Comments?  I still haven't fixed my "Intense Debate disappearing comment link on home page view problem" yet, so if you are viewing this on my home page and want to read my comments or make one of your own, click on the post's title to bring you to the post page view. Voila!

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.