Two Years

Dad & Me, Riverside Park, 1998

Two years ago today, my father died.

It was not the least bit unexpected.

He was nearly 93 (less than 2 weeks shy of his birthday).

He was gaunt, frail, a shell of his former self.

He had been actively dying for three months.

But still, there was a shockwave.

Suddenly a crack in the atmosphere of the world.

A sharp dividing line, a before and after:

The world with my father in it on one side.

On the other, the world without.

Diminished.

There was a howling Nor' Easter that day.

So unlike the near seventy degree early spring this March has brought us.

March 2010 was cold and snowy. A bitter thing.

Gray outside to match my inner grisaille.

He died as he lived.

On his own terms.

Surrounded by people he loved.

With great drama just beforehand.

And then, very quietly, neatly done.

He just... stopped.

Moments either before or after midnight.

March 13th, 2010

I write this now at the juncture. The end of year two, the beginning of year three without a father.

I know it gets easier with time. It already has.

But today is still tough.

And full of to-dos, no time to mourn.

So I will make do with little momentary pauses; a sliver of grieving, slipped into the cracks of life.

I will carry his photo with me today.

To remember.

To keep him present (though he ever is).

I was lucky to have had him for nearly fifty years.

Now two years gone.

Two years.

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March is the Cruelest Month

I am so very, very happy to be incredibly busy this month. So busy in fact, that I don't have time to ponder and wallow.

Because March, the last two years running?

Has nearly done me in.

This time last year, even though my body was officially "healed" from my first ever surgery (goodbye, gall bladder!) my spirit was still struggling. I was not yet nearly "myself" again.

And suffusing that whole winter, laying over it entirely, were ghostly tendrils of the previous winter when my father had been busy dying, and I had been completely consumed by caring for him and supporting my now widowed mother.

So last March was the final crushing end of Year One Without a Father. That year of sad first anniversaries, of remembering and reliving so much awful.

As I was grinding through it, trying to keep my head above water, everyone told me I would be astonished at how much better it gets, with time; that year two would be nothing like year one.

And they were right. Thank all the powers that be, they were right.

Two years ago, today, was four days out from Dad's passing. I was witness to his emaciated, worn out body, fiercely clinging to the last shredded remnants of life.

His incredible strength that I had admired throughout his life now a liability, he was really ready to go, longing for release. But his stubborn, fighting, never-say-die spirit won out. Over and over.

Until it didn't.

March to me is my parents' anniversary on the 1st. My father's death on the 13th. And my father's birthday on the 25th.

Two years ago, he nearly made it to 93. This year, it would have been my parents 53rd anniversary. He would have been 95.

And yet thoughts of him, of my Annus Horribilis, bubble up momentarily to the surface, then sink back below.

I am busy.

Busy with life.

Rising with my children. The thousand tasks involved in their care and feeding and shepherding throughout the day.

Laughing at their jokes. Supervising 4th grade homework. Cheering at their basketball games.

Busy preparing for Jacob's annual IEP meeting, for which "the letter" came in the mail yesterday. Always giving the shortest notice legally allowed, it's in two weeks. Scramble. Scramble.

Busy producing the New York City Listen to Your Mother Show. an amazing endeavor that is heating up white hot in my life, now that we are cast and less than two months out from showtime. (May 6th - mark your calendars!)

Busy doing everything that needs to be done for my nearly 90 year-old mother.

It's good to be busy. I am grateful. I complain (it's my nature). But I'm not REALLY complaining, you know?

Two years ago, I was in the thick of death. There is such a surreal quality when I look back to that time, the awful and beautiful of it, all wrapped up together.

And while "beautiful" seems a strange word to be found here, describing death; now, two years out, I can see that part, too.

It was a gift to be able to be there with my father, and for my mother. To lie beside him and gently, so gently, stroke his back so he could continue to sleep, comforted by the last simple human connection of touch.

At the end, at the very, very, very end, there is no future. The past is a distantly receding dream. There is only the bright white light of NOW. And then it goes dark.

Sitting in my father's light, at the end of the end, was a gift, with its own beauty. And now, two years out, I am beginning to see that, beginning to treasure it.

And so I run about these busy March days, grateful for the life that flows through them. 

Starting year three.

And waiting for April, and true spring to come.

I'm linking up to Maxabella's I'm grateful for... because I so am.

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Call in the Calvary

One year ago, on a sunny but cold morning not unlike this one today, I received a call from my father's hospice care nurse, Ed.

It was time.

Dad had taken in very little to eat or drink for days. He was emaciated. He was dehydrated.

It was time for my father to make the final move of the bitter endgame that had been going on so long it was hard to recognize he was finally there.  Until he so clearly was.

His pain could no longer be well managed by his in-home hospice care team.

He was suffering.

He had wanted to die at home, but had become so un-moored in time and space, he no longer know he was home when he was there.

The comfort of easement from pain trumped the comfort of his own unrecognized bed.

And so we made plans to bring him to Calvary Hospital.  A lovely, caring hospice center in a godforsaken corner of the Bronx.  They specialized in cancer patients, but were known to take the frail elderly, dying of other causes, too, if asked properly.  And Ed, of course, had connections.

When I got the call, Ed didn't know if a bed would be available right away, but as I rushed through my morning routine to hurry to my father's side, I got a second call from Ed: yes, there's a bed, and yes, they're coming for my Dad today.

I was told it would take a few hours for the transfer ambulance to arrive, but they pulled up to the door of my parent's senior residence precisely as I was approaching the building.  We rode the elevator up together, they: on the job, jovial; me: grim, ground flat, pasting a thin smile on my face to greet my mother without sending her into tears.

It was decided that my mother and their lovely, loyal aide, Mina would ride to Calvary with my father, while I would stay behind and make phone calls, arrangements; meet them about an hour later.

They hurried out, and soon I was busy on the phone canceling his in-home aides, alerting my siblings, arranging pick-ups and drop offs and all sorts of childcare for my kids for what I knew was going to be a very long day.

Also, my least favorite call, alerting the funeral home that it was likely to be sooner rather than later, checking in to see that things were still as I had left them in December, when I had first contacted them, when we had been told to prepare for his immediate departure.

Mina called to let me know they had arrived, that all was OK.

I completed my tasks, sat for a few moments, shell-shocked, in the suddenly too quiet and still apartment.  A cranky meow reminded me of my last obligation here: leave food out and a light on for Willie.  He wove himself about my ankles as I poured him fresh water, told him his “Daddy” was gone.

I hailed a cab on the street. Actually I hailed three or four before I found one who hadn't begged off, whose eyes didn't go wide with terror when I explained we were traveling to the Bronx and I had no idea exactly where we were going, knowledge of only a street address and a general neighborhood name to steer us.

We drove through grim, gray, blighted streets; past sagging houses whose children tumbled out to play on concrete playgrounds washed in visible car exhaust.  I had thought I was too numb to feel any sadder, but that did it.

I arrived, found Dad's room with Mom sitting by his side holding his hand.

He was grimacing, agitated, seemed to be in pain. We notified the nursing staff and mere moments later a morphine shot mercifully appeared. His face softend, his body relaxed once again into sleep.

I looked around the small, spare, clean room, noticed a shopping bag on the window sill, clearly come from home. "What's that?" I asked my mother, hoping it might be items she had packed to keep herself comfortable and occupied while waiting with my father.

Her unexpected answer: "Oh, that's some clothing I brought along for your Dad.  He'll need something to come home in." I must have looked perplexed because she added "Remember? He was only wearing underwear when they brought him in here."

Mina comes up beside me, whispers that she had tried to dissuade Mom from bringing this bag, but Mom had insisted.

I sigh.  I take my mother's hand, stroke it.  Look down.  Look up.  Bite my lip.

As gently as I can, I remind her: "Mom. He's not coming home from here."

"He's not?" she asks, her voice quavering; confusion, doubt, veiling her eyes.

I understand. The many other times my father has gone into the hospital, gotten fixed up, he has always come home.

"It's not that kind of hospital" I try to explain. "This is a hospice. Here they will make his final days as easy and pain free as possible."

"Really?" My mother asks, all teary. "This is the end?" her voice crackling, sadness swamping her anew.

This is the tragedy of my mother's terrible memory.  While it has provided her the welcome relief from having to live day-to-day as we do, with the knowledge of Dad's immanent demise hanging over her head, it makes it constantly heart wrenching for us, who must over and over and over again inform her, as if for the first time, that his life is soon drawing to a close.

On the other hand, it does occasionally provide some comic relief.  When my sister Lois called to discuss her travel plans for Friday, she asked to speak to Mom, too.  I didn't listen in on their conversation, let my mind wander.

Afterward, Mom asked me: "Where are we? What is this place called? Lois asked and I couldn't remember... I told her it had something to do with horses."

It took me a moment to figure out the exact disconnect, and then I laughed.  "No mom, you're thinking of the cavalry.  This place is called Calvary."  She laughed. 

I didn't add that it is named for Jesus's suffering, the location of his crucifixion.  Better for her think of rescue by a charge of horses, instead. 

In a bit, Mina brought my mother to the cafeteria to get something to eat, to give her a break, and I was alone with my father for a little while.

I watched him sleep.  He woke for a moment, I stroked his gaunt cheek.  He fell back asleep.

And then?

God help me, I pulled out my phone and I took some photos of him, there.

I knew they would be sad, awful, ghastly; not how he would want to be remembered.

But I also knew they were an important document, a testament to his great strength of will that I should not forget.

I knew that exactly how he looked at the end would fade, and that somehow I needed it to not disappear completely; that I would need to remember, and that my father the photographer, the documentation, would understand this impulse, and approve.

So I took a few quick photos, the last of my father.  At the very bitter end of his very long sweet life.

For those who do not want to see the ending?  For those of you want to remember him as the proud, strong, handsome man he was until nearly the end?  Look immediately below, then do not scroll down further.

Here is a lovely photo of my Dad, taken on my Mother's birthday in September, 2009, on one of his last good days:

Dad, September 2, 2009

And now, if you are willing to bear witness to my father's gruesome ending, keep scrolling down to find this: a set of photos taken in my father's hospice room, three days before he died.

They are not lovely.
 
He is emaciated.

There are scabbed bruises on his forehead and nose from the last time he had tried to get out of bed at home, tried to stand, long after it was possible.  He had banged his head on the protective bed-rail.  Hard. 

He barely looks alive.

But still I need to share this.

I need to show you, who wish to look, the father I last saw, held, kissed goodbye, one more last time, this one year ago.

These photos were taken on my phone, the only camera I had handy.

They are blurry and of odd color, the blue light from the window, the yellowed incandescence of his room lamp blending in the middle over his face, adding a further edge of the surreal.

But no, this was all too real:

Dad, March 10, 2010

It was hard to leave him, late that night, but I had to go home, rest, gather strength for the coming day.

My mother stayed. She was by his side, as ever.

I came back the next day.

And then, the day after that?

He was gone.


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The Last Room

The Room

There was nothing particularly special about this room. In fact, what stood out most about it was its lack of outstanding features, defined, by default, by its utter ordinariness. 

Boxy, square, white walls, one wide window with white venetian blinds. Rented, transitory, stripped of all but the increasingly bare necessities:

Bed. Dresser. TV that is no longer turned on. Nightstand where books had once piled high, reading glasses at the ever handy, now filled with supplies: tissues, non-latex disposable gloves, chucks, Depends, Vaseline, bandages.

The room my father spent the last three months of his life in.

Home. But not really home. The assisted living facility my parents had moved to a scant nine months before.

My father, he who had traveled the world, danced in tavernas on Greek isles, hiked the terraced rice paddies of upland Bali, swam with dolphins in Caribbean waters, now lived, or rather existed, in about 150 square feet of white room.

When first home from the hospital, he would leave the room occasionally, shamble out to the living room to perch on the sofa, briefly.  Once or twice he made it into the second bedroom, the room filled floor to ceiling with his life’s work: his photographs.

Shelves overflowing with boxes of negatives, prints; once ordered, now haphazard and random as his brain. A worktable splayed with his astonishing black and white images, waiting in vain for his hand to turn them once again, leaf through, arrange, plan books, shows, a future.

But in the last, his final month, there was no more walking. There were no more words. Up until the very end though, he would still, on occasion, stand.

It was impossible. He had no muscles left in his legs, no strength, no breath, hardly any blood coursed through his desiccating limbs.

Yet stand he would, and, for a handful of heartbeats, gaze out the window into the vast brightness.

From the 19^th floor, looking west from the east, there were mostly rooftops, a glass and steel high-rise or two looming above, piercing the sky, proclaiming the cityness of this cityscape view.

Busses rumbled below. Pedestrians well bundled in their winter wraps. Dogs being walked, children being strolled.

But my father did not look down. He looked out. And up. Into gray wintering skies. I have no idea what he saw, what beckoned at his horizon.  

And then, at the very end, his domain shrank again. No longer inhabiting the room, he instead inhabited the bed. A rectangle, roughly six feet by five. Covered in the soft mauve comforter I had purchased for him when he came home from the hospital. 

My mother hated it then, wanted her old down comforter back, resisted the truth of the need for machine washability and fast drying. Now she loves it, runs her hand over it, thanks me for buying it. Not remembering why.

We would all take turns laying beside him, ever so gently stoking his back. Because only with the reassurance of touch would he rest, sleep deep.  Like a colicky baby that needs to be held and rocked 24/7, so too was my father at the end of his life.

After he died, and a little time had passed, my mother moved to a smaller apartment within the building.

It was my job to pack her, to move her, and then to slowly go through all of my father’s many things, to dismantle his workspace, parcel out his photographs, his life‘s work, for cataloging, storage, posterity.

At long last I was done. And as I left their apartment for the last time, I needed to stand in that bedroom once again. Empty this time, truly, but for faint ghosts.

I stood at the window, looked out, up.

The Window

A moment froze in time. I took a photograph. I cannot say what I saw, felt.

I then looked west, towards my home, towards the schoolbus that needed to be met, the dinner made, the homework supervised, the bustled life lived in our too full, overflowing rooms.

I left, closed this door for the last time.

I went down to my mother, waiting in her apartment, twelve stories below, to sit with her in her widow's lair and look out together on the city, a little bit closer to the earth.


This post is linked up with the memoir prompt over at The Red Dress Club.  To see the prompt, click here.  To go to the link-up and read other posts, click on the button below: 

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Not Their 52nd Anniversary

My parents in 2009, just before the big slide

Today, March 1st, 2011 would have been my parents 52nd anniversary.

I do not have to call my mother to know how sad she is today.  I will visit her, take her out, provide distraction, a shoulder to cry on.

I am sure I will have to rouse her when I arrive, in spite of my having called her yesterday, last night, again this morning to confirm that I am coming by.  Sleep is the great drug, and my mother will have drunk its draught in full.

My mother tells me she wakes up some mornings forgetting, reaches out a hand towards the other side of the bed, feeling for my father, her husband, partner, lover, best friend of fifty one years.  She finds instead Willie, the cat; a piss poor substitute, but he will have to do.

When I come upon her in bed, my mother will wave me away, ask me to leave her alone, to sleep and wallow.  But I will not.  I will coax and cajole her, my third child to rouse this morning.

I am not trying to jolly her up, am not asking her to forget what day this is, but rather to let me join her in her sadness, in remembering him and their love. 

I will bring with me the book of photos I made, staying up all night the night before his memorial service, pulling all the pictures I could find out of their frames, stripping other albums, pawing through boxes upon boxes of photos; trying to sum up, contain his life in one album.

We will leaf through photo after photo of Dad from mewling babe to smart boy in short pants to handsome young man (all fathers I never knew) and then onto his first marriage, son and daughter. And after that comes my mom, then me and our many wonderful years together, flattened out, frozen in time.

Last March my father miraculously held out past their anniversary, although it was not a happy one. I wrote a post that day, Nearly Finished Business, fueled by love and sadness, looking towards the short horizon I clearly saw.

He made it thirteen more days, halfway to the 25th, his 93rd birthday that I sensed he was aiming for.  But, skeletal as a living corpse, strength that had held on past all reason for three long months finally gave out.

I think one of the reasons that zombies hold zero appeal for me, in spite of their recent, inexplicable popularity, is that I witnessed my father become one.  By the end he was a barely animated thing, his body a husk, his mind long freed.

Anyone who has gone through this process with a loved one?  I am sure, likewise, finds nothing amusing about the fictional walking dead.  We have lived with and cared for an actual one.

They are not scary-cute.  They are sadness beyond knowing.

I have been dreading the coming of this.  This month.  This March.  This explosive ending of our year of empty firsts, of sad anniversaries.

March is bracketed by my parents wedding anniversary and my father's birthday, and contains within it the date of his last drawn breath.

A month from now, April 1st will breeze in on spring's wet wings and I will run to embrace it.  It is also Autism Awareness Day, and that, too, shall be embraced with enthusiasm.

I apologize in advance for any dearth of cheer and mirth you may find in this coming month on my blog.

One year ago, today, I was engulfed in my father's long, protracted dying.

Today, this year, I will hug and tickle my children awake; kiss my husband a morning hello and goodbye; enfold my mother in love as we remember my father, her husband, together; embrace life.

In all honesty, I must admit that I was already writing this post when I got Mama Kat's latest writing prompts, so I can't truly say "inspired by" this week.

But when I read those prompts and got to number 3: "What were you blogging about last year at this time? What has changed?" I thought "Has Mama Kat been reading my mind?"  Because that is EXACTLY what I have been kind of obsessed with for a while.  This prompt seemed spookily tailor made to fit in with what's on my mind this week.

So even though it feels a tiny bit like cheating, I am linking up this post to Mama Kat's writers workshop.  Because it *is* OK for the universe to occasionally throw me a bone, right?




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Not a Valentine's Day Post

Now that my blog has turned one year old and I've had my blogaversary, I thought I might be revisiting some significant days from last year, able to compare where I was then to where I am now.  See where the great wheel's full rotation has brought me.

What I conveniently forgot in those lovely grandiose thoughts was that this time last year was all about the process of my father's dying.  I did not write a Valentine's Day post last year.  Romantic thought was far, far from my mind, and even the love of and for my children was somehow faded, mashed into the background as the grinding up of my heart in the maw of my father's slow and utter disintegration, his ridiculously drawn out demise, took full possession of the foreground of my life.

And this year?  I am still just. not. there.  I have spent the last day traipsing around the inter-webs, reading my friends' beautiful heartfelt posts of love for their mates and children.  They have filled me up, warmed my soul like soup on a frigid day.  I have felt that I should write one of my own, but it just isn't in me today, all worn thin by life right now.

I love my kids and my husband boundlessly.  My sweet (and delightfully spicy) widowed mother, too.  The love for my wonderful, now nearly a year dead father still lurches around in my heart, where it will always find purchase.

But the space I would have to be in to write a sweet post?  Just will not come to me today.

And please don't think I am all doom and gloom.  I have been to the land of sweetness and light, many times between last year and this.  I wrote a love letter to my boys about their birth on their birthday last year.  I celebrated their delightful little selves in many a post.

It's just that I am coming up on the one year anniversary of the hardest times, and memories of the end game keep washing up to keep me ghostly company.  And I have, of late, been ill; sleepless and ill tempered, too.

So if you want to read a lovely Valentine's Day post?  Visit my friends.

Try this one: my sweet valentine

Or this lovely post: Everything Good Between Men and Women

Or go here: uncomplicated love

Or how about this: Better With

(And for a very funny, but decidedly NOT G-rated read? Go here: Hat-flinging)

And?  Hopefully?  Next year?  Here, too.


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A Full Year of Bologna

One year ago today, on February 6th, 2010:

My father was still alive, but very busy dying.  And I was very busy caring for him and for my very sad, overwhelmed mother.

My son Jacob was still in a school that was not wonderful enough for him, where they did not truly see him, did not love or challenge him.  And so I was very busy trying to find a new Special Ed school for him for the coming academic year.

I sat down at my computer and wrote my first blog post, began this blog: The Squashed Bologna

And so on this, the occasion of my one year anniversary of starting this blog (or "Blogaversary" if you will), I thought I would reflect a bit and take you back to the beginning.

Someone asked me recently why I blog.  They didn't quite get it.  I suppose it seems odd to those who don't.  Like wearing your underwear on the outside for all the world to see.

For me the answer started out simply, and grew more complex as my blog writing and my relationship with the blogging world grew, expanded, and became more complicated, too.

The basic answer: I began blogging as my father was actively, painfully dying a long, drawn out, difficult death.  I just could. not. tell. one. more. person. what. was. happening. and. how. I was. doing.

A friend of mine was keeping a blog about children's books and what her kids were reading, and I loved reading her blog.  She told me how easy it was to just go on Blogger and start writing and encouraged me to do it.  And so I did.  (Thanks, Jill!)

I needed to be able to say to people: "You want to know what's going on with me and my Dad?  Read the (damn) blog."  I could pour it all out there and not have to tear myself up repeating everything over and over again to everyone.

I had thought up the title "The Squashed Bologna" some time ago, as I was feeling so caught up in sandwich generation stuff.  The few years leading up to my father's death were full of emergency room visits and hospitalizations; health crises and rehabilitations.  Many were the times I would disappear from my family for days on end to be by my father's or mother's side in hospitals.

I had also been writing about and thinking about autism for a long time (because of my son, Jacob), but privately, in my journal, just for me.  I had done a lot of research, learned a lot about neurobiology and brain biochemistry. Was turning into an autism auto-didact.

People had been encouraging me to write a book, but that seemed like such a big deal, and I couldn't picture taking on such a huge enterprise at that time.  Plus my ADDish brain balks at large projects, gets overwhelmed by the amount of details that need to be taken care of.  I freeze up, unable to begin, daunted.

A blog post however?  A trifling thing, short, sweet (at least in theory, I know my posts often go into overtime), un-daunting, attempt-able, do-able.  So I did.

As I began to write and post I realized that I wanted to use my blog to speak about autism and ADD and to tell sweet stories about my children, too.  I wanted to show what family life looked like to us; so, so different from what I had imagined while I was peacefully gestating.  (Well, maybe not so peacefully considering how nauseated and generally uncomfortable I was throughout my pregnancy.)

The good and bad about blogging, being self-published, is that there is immediate gratification there, a big plus for ADD-brained folks like me.  You write it, you hit the button, poof out it goes into the world, for better or worse.

Also?  I have spent pretty much all of my adult life as a blocked writer.  Everyone who has known me well has encouraged to write.  I have many pages of half written stories, plays and essays in files dating back to 1978.  Yeah.

Any time I came close to taking myself seriously about it, any time a writing teacher encouraged me, told me I was truly "a writer" and to stick with it?  It completely terrified me, freaked me out, caused me to drop my "pen" and not write another word for months, sometimes longer.

When James Baldwin (with whom I took an intimate writing seminar in college) praised my work?  Ack!  My writing mojo went cold for years afterward.

But there is something to be said for getting older, becoming a parent, learning to get over yourself, get on with it, learning to be someone who gets it done because it has to be done.  Old inhibitions, fears, neuroses, fall by the wayside.  (Well, some of them, anyway.)

I no longer care about meeting the definition of "a writer."  Simply, I write.  I call myself a writer.  Like me or not, read me or not.  Whatever.

And so I am writing, freeing up something inside me long dormant, long coiled up; my voice coming loose, unfurled.  Finding the storyteller within.  Letting my love of words, of language out into the world, through my blog.

And the other part of this?  Is the amazing community that I have found here in this cyber-world, the "blogosphere".  A world of writers, of (mostly) women, amazing and strong, unbelievably supportive (at least the ones I have chosen to connect with are).

And then there is the online special needs parenting community, which I could go on and on about.  I have, elsewhere, but I will just say this: they help to keep me sane. 
 
Obviously, I also have a personality that tends towards revealing rather than concealing, an over-sharing bent, or else I would be wearing my underwear on the inside, hidden away from view, like the rest of the non-blogging population.

And so here, among my blogging brethren, my over-sharing peers?  I feel mighty normal.  So now, instead of overwhelming my "real life" friends (whom I know love me very much) when I'm feeling intense or all soapbox-ranty, I can splay that all out here, and then tell people:

"You want to know about that?  OK, I can tell you, and possibly have your eyeballs roll around in their sockets by the time I'm through.  Or?  Read the damn blog."  (And this way you can skip the boring parts and I'll never know.)

Also?  I would like to take this moment to thank you, my readers: the ones I know from my real life, the ones I know from the blogosphere, and the ones I will never know, you who silently read and glide on.

That my words may have meaning for you; make you laugh, cry, think, see something in your own life in a new light?  Pleases me beyond knowing.

And finally?  May I say:  What a year this has been!  (I'm not going to re-cap it again, I've done that recently in my New Year's year-end wrap-up post.)

I'm just going to say:  Whew!  Glad that's over.  Let's move on.  (And please, nobody else die, OK?)

Where this next year, this next turn of the big wheel will take me?  I have not a clue.

I am working hard right now to be present each day; to fully be awake and aware of the individual moments, here with my family, paying attention.

And not JUST so that I can blog about it tomorrow.

Sad Anniversaries

I am feeling down today.  Blue.  Under-slept and over-tired.  Getting absolutely nothing done.  Reading, eating cookies.  Not answering the phone, just not feeling social enough.

And that shower I was going to take this morning?  Not yet, my friends (be very glad computers aren't equipped with smell-o-vision).

And it wasn't even classic peri-menopausal insomnia keeping me up last night; I just didn't let myself go to bed.  Because, don't you know, if you don't go to sleep, then tomorrow never comes.  Convenient little trick, isn't it?

What?  That doesn't work?  Yeah, I kind of figured that out myself.

I was wondering why I was such a hot mess right now, and then realized, of course, it's an anniversary. And not a happy one.

On this day, December 7th, last year, Dad went into the hospital for back to back check-ups with his cardiac and vascular doctors.  I had cleared the whole morning.  I didn't get home until nearly midnight.

When the vascular doctor could find absolutely no blood flow to his left leg, and his cardiologist looked at his echo-cardiogram, it was clearly all going south.  Fast.

There was an operation. There were events and procedures.

When they sent him home a few days later, it was to die.

We were told to expect him to last a few days, a few weeks at the absolute outside.

It was not an easy or happy holiday season last year and all the festiveness circling round me this year is leaving me likewise cold.

In some ways it’s even harder.

Last year there was my father's constant needs to be met, his acute care to engage in; my brother and sister charging in to spend final, precious time with Dad; my devastated mother to comfort; a swirl of practical activity as we prepared for his last few final days.

And then?  He lived three more months. The whole winter.

My father spent last winter, the whole fucking winter, dying. Very slowly.  (Sometimes being strong can work against you.)

And now, to me, winter = death. And I don't want to have anything to do with it.  I want to stay inside and hide.

But I have children.  They need to come and go, and can’t do it alone.

This cold blustery weather brings me back to all those freezing late night trips across town to buy the adult diapers that my mother informs me they are out of at 11 pm.

Those 2 a.m. trips to pick him up off the floor when he had fallen, getting out of bed and walking to the kitchen, which his doctors had assured us was an utter impossibility for one so frail and infirm.

They had no idea what a stubborn, willful man my father was.  If he wanted to go to the kitchen, he was walking into the kitchen, damn it, dying body or no.

And then he was no longer capable of even that.  And then there needed to be round the clock care.

And then, finally, for his final three days, he was in the caring shelter of a hospice in the nether regions of the Bronx.  I hated the long ride out there on traffic choked streets through those blasted, blighted neighborhoods more than anything in my life to that point.

In the gray March chill of a clinging winter that would not loose hold, I said farewell to my father.  To the ragged, skin-stretched skeleton that was what was left of him.

I am not looking forward to these next three months, re-living those days.  I wish for an end to this awful year of bereft firsts.

I am wishing I could just fly south, like birds and butterflies. Flee; fly free of winter; skip out on all this.

But I have children, here.  A husband.  An elderly, sad, increasingly lost mother.

And these ties that bind also offer what solace there is. They are my warmth, my light; my summer-in-winter.

And if I hold them a little too tightly tonight, with my eyes shining a little too brightly, I hope they will understand.

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Sitting Here in Limbo

My husband is a very private man. I am not. His 93 year old mother went into the hospital a week ago Monday and she is gravely ill.  As my father passed away just this past March, at a similar advanced age, of a very similar condition, after spending much time at the same hospital, seeing some of the same doctors, you can see I might be having a lot of feelings right now.

I wrote about this yesterday, here.

My feelings are mine, but the situation at hand is my husband's.  And I am trying to walk that fine line between respecting his privacy, honoring his need to own the story of his mother, while still finding a way to talk about what I am going through right now.  Which is completely tangled up in the story of my husband and his mother.  His story. 

So there is much I cannot say.  But I will say this: there is nothing easy about this time.

We wait.  A lot.

For doctors.  For nurses.  For phone calls.

And there is so much that needs attending to in our lives.  We carry bags and briefcases full of important-stuff-that-must-be-done.  And they sit unopened.   Waiting time cannot be filled.

It feels empty, but it is not empty.  It is full.  Of waiting.

The mind jumps around, cannot concentrate for long; it alights on memory's branches, leaps off again.  We flit between past, present, and future, settling nowhere.  We stare into space.

When there is so much feeling, sometimes there is its absence, too. The lid so tightly clamped onto the kettle, furious boiling contained.  For now.

I hold my husband's hand.  I hug him tight.  I want him to know he is not alone in this.  But of course he is, too.

I think a lot about my father, and remember again how it felt to watch him slip away, how there was that point when he was really no longer my father.  At all.  But then there would be a moment, and I would hold onto that one, a firefly cupped in my hands, winking its delicate yellow glowy spark into the darkness, until the next.

There kept being moments.

Until there weren't.

We wait.

Wordless Wednesday: Echoes of my Father

My Dad, 1962
(photo by Bruce Steinhardt)

Yesterday I visited my 93 year-old mother-in-law in the hospital. It was my first visit of this particular hospitalization, as I have been busy holding down the home front so my husband, Danny, could spend as much time as possible with her.

“Sure”, I’d said when he gave me the pavilion and room number. “Easy, I know that ward, see you there around noon.”  Bustling about, trying to wrestle order from chaos in our apartment, I did not stop to think for a moment why I knew that ward so well.  So it took me by complete surprise when I burst into tears as I rounded the corner to approach the cardiac care unit.

The one where my father had spent much time in the last year of his life.

He didn’t die there, but still, it was full of memories.

Ghosts.

Echoes.

So here, I want to pay tribute to him once again.

This is one of his important photographs:

Jim Steinhardt
Woman in Greenwich Village Cafe, 1948

And this, his most well known, "signature"  photograph:

Jim Steinhardt
Cement worker, 1955

Here is another legendary one:

Jim Steinhardt
Pearl Seller, 1947

He loved to photograph children at play :

Jim Steinhardt
Girl Playing Hopscotch, 1950

Everyone loves this one:

Jim Steinhardt
Coffee Shop Santa , 1949

Finally, here is my father last year in September, on my Mother’s birthday, during our last good family time. By Thanksgiving he was really ill, by the spring, gone.

Dad, September 2, 2009

Good bye again, Dad. I was thinking of you today, mourning you anew.

Remembering how I would tape up Xeroxes of your photos around your hospital beds to cheer you up.  So we could look at something of beauty in that place of pain and diminishing.  And so we could show the hospital staff “The failing body in this bed was a person.  This old man was somebody.  This is the man who took these beautiful, astonishing photos. Treat him well.”

If you would like to see more of my fathers photos, look here.  And if you would like to know a little about his life, here is my eulogy that I read at his memorial service this past March.

He wanted to be known. He was beloved. He is remembered.


I’m linking up to Wordless Wednesday at Angry Julie Monday.

Six Months

Good things happened today.

Ethan had a great second day of third grade. 

Jacob had a pretty terrific first day at his new Special Ed school.  The woman who greets the kids at the door, who helps them off their buses (when we finally get his bus service functioning) is the warmest, kindest, friendliest woman on this planet.  And she’s one of the assistants in his room.  His teacher?  Equally lovely, smart and caring.  So far so good.

But it’s barely skimming my surface today.

I was up nearly all night.  Moving slowly, unfocused, sleepwalking through finishing up all the things that needed to be done to settle Jacob into his new school life.

I thought it was anticipatory anxiety.

I thought it was classic Momsomnia.

And then I looked at the date: September 13th.

And remembered.

Today is exactly six months since my beloved, frail, elderly father died in March.

He passed between the worlds right at midnight as the 12th slipped unquietly into the 13th, my sister waiting by his now quiet body. She had gotten a final hug, gotten to say goodbye. It was good.

I was states away in Vermont, but that was good too.  I had been saying goodbye daily for months, the local, caretaking daughter; the hauling him up off the floor daughter; the change his diaper daughter; the holding my Mom while she sobbed daughter.

The memories of those last awful months slowly fade.  The memories of my father will last a lifetime, and hopefully beyond as he lives on through his amazing body of work, through his family who remember him and tell tales.

A year ago he was slowing down, but still here, still Daddy.

Six months later, gone.

And tonight my husband sits by his 93 year old mother’s side in the emergency room, as she too fades away before his eyes.

Tomorrow morning I will have to tell the boys: Daddy’s not here, here’s at the hospital with Grandma Blanche.  Ethan will ask if she’s going to die, and I will tell him the truth: probably not today, but soon.  He has seen this all before.  Jacob won’t understand, he will just be missing his Daddy. 

And I know. 

I know how that feels.

If you would like to know more about the father I loved and his last months on this earth, please click through the links above to my earlier posts, and to his dealer's site, showing a small sample of his photographic work. Bring kleenex.

Tune in again tomorrow...

...because I am about to try something new here.  I am about to become a regular blogger.

I have realized that I put way too much pressure on myself to come up with impressive and "important" posts.  Maybe it's because I started blogging as my father was dying and the words just tumbled out of me all intense and poetic as I was facing the first big death in my life, like here. Or because I have special needs kids, and have written posts that I worked on for weeks, after first mulling over and thinking about the big ideas in them for years, like here.
 
But I have decided to cut myself a break, and let myself be a "regular" blogger. Regular in both senses of the word.  First off: frequent, hopefully daily (you all know what regular I'm referring to here, right? don't make me spell it out for you.)  Secondly, regular as in "what is regularly done"; what so many others do, and what blogging is so gloriously good for: sending little postcards from my inner and outer life, sharing snapshots of the moment. I want to write "today" in a post and have it actually BE the today I'm writing about, not over ruminated and 2 weeks later. 

The "big" posts will come occasionally, there may even be important ones from time to time.  In the meantime, I can let out all those thoughts, feelings, observations, rants and shouts that I have been jotting down, trying to mold into something "more" before it felt OK to send them out into the world. Screw that. This is my soapbox and I'm going to have fun with it.

So stay tuned tomorrow for a short snippet of random fluff from my brain. That is all.

The BlogHer10 reflections of a very. slow. newbie. blogger.

OK, I’ve done it again. Let a post I “have” to write sit and simmer inside me, getting written and re-written over and over in my head and not feeling like I can move on and write anything else until it comes out.

And I have so many other short, sweet posts jammed up behind it that would have been timely “this happened today” moments but by the time they can flow, the “today” is no longer today and then it all feels weird turning the present into the past, losing the immediacy. See, this is how I tie myself up in unnecessary knots.

This is why I am such a damn slow blogger. I haven’t gotten the hang of it: letting the magic just be. This is the supposed beauty of blogging, letting what bubbles up, bubble up; shape it a bit and then let it go float out into the world: here it is, look at its beauty…pop…move on.

Maybe I am too old, old school, too tied to the idea that my words will live forever in the inter-ether. Maybe I’m too linear. I really felt like I had to get my BlogHer wrap-up post out (2 weeks ago!!!) before anything else can come. Kind of like… well… if you’ve ever had kids, and they’ve ever eaten too many bananas…. I don’t need to elucidate the analogy, but let’s just say it will feel good to get this out and move along.

So, unfinished, raw, barely still relevant: Here is my BlogHer10 Post-mortem-wrap-up post. For those of you with no interest in this world, I once again beg your forgiveness for this navel-gazing blog post about bloggers and blogging and my experience at the weird, wild, wonderful thing that is the BlogHer Conference.

It’s over, and after this post I will seal my lips, never to speak of it again… until next summer that is (but that’s a really long time away, honest) and it will be safe to come back and read me after this, really.

Let’s start off saying that the reason it has taken so long to get this thing off the ground is that I had an odd, strange, mixed bag of an experience at BlogHer. I had some amazing moments. I didn't mope. I had a generally great time. I don’t really know what more I was expecting, magic, maybe? And it didn’t quite happen for me. And I know for a fact that it wasn’t the conference, it was me.

I managed to be in the right place at the right time, much of the time, like here, in the women’s room outside the People’s Party on Thursday night.

I walked in, introduced myself to Jenny, The Bloggess (helps that I am no longer shy) hugged her, and hung out while Annissa and a few dozen others slowly filled the room. It was awesome, and yet…

I met up with some amazing women that I had only known online before, like Sandie, aka UrbanMama (who also blogs about grief, although we mostly gossiped about movies) and many, many more…

I met some amazing women I had no idea existed until I met them at the conference, like Christine Moers who became fast friends with my new friend Sandra, the kind of connection I have always made at conferences, but not this time…

The beyond lovely and talented Karen of Chookooloonks wrote on my arm: “Evolving” because I was definitely a verb, not a noun, in a thorough state of flux …

The special needs parenting community was fierce, starting with the “Blogging Autism” panel, the first morning. Meeting and connecting with BlogHer special needs parenting editor Shannon Des Roches Rosa of Squidalicious, and Stimey, and Ellen, and Julia, and... (too many amazing women to name here, see Shannon’s post) was a definite higher than high point…

 
Suddenly, Neil was there, and I was shocked, knowing that he had gotten the call that his father-in-law had died just as he was about to board his plane from LA a few days earlier. He looked a little shell-shocked himself, and has written his own “there and not there” post about the conference. Reading it, I realized that even though it’s been almost six months since my father has passed, maybe I had still not been quite ready for the big noisy happy...

I went to a lot of parties. I had fun. I danced. But not with wild abandon, not like I meant it…

I was standing next to Jory, 4 feet away from Greyson Chance as he charmingly sang his heart out….

It was an AMAZING conference, and I am so glad I went. But I was not completely inhabiting myself. I have never felt so present and remote at the same time. It was like this photo:

There, but with something between me and what’s right in front of me, and a bit out of focus, to boot.

I have been worrying at this tangled mess ever since, picking at threads, trying to figure out why. Part of it was that going home to my own bed and family every night left me out of that “being out of place and time” magic, kept me too tethered to my real life: lunches to pack, children to kiss and cling to me, husband anticipating me home at a certain hour.

And the Sunday after, when the city was everyone’s playground: my kids owned me lock, stock, & cranky mommy barrel.

But that can’t be the whole answer.

I don’t know if I bring all of myself to anything these days. Part of me is still in that little room holding my father’s hand, watching him die a little more each day.

Part of me is still sitting in the little room where they first tested Jacob six years ago, where the psychologist asked if I noticed that he climbed on me like I was furniture, that he didn’t seen to care when we called his name, that in spite of the obvious joy that suffused him, that’s not the same thing as relatedness; the room where I was told that my happy, loving boy was not just speech delayed, not just “dreamy” as a rather useless speech therapist had reassured me, but was actually Autistic.

I leave parts of me behind in so many places, and silly me, I forgot to pick them back up again, finding myself rather less than my full self for some time now. And it took BlogHer to make me see it.

And I could blame it on the ADD, but that’s too easy. And I know, now, I need to gather those pieces up and stitch myself back together. I’ll need a few patches.

There’s going to be some hot glue involved. Maybe even a little wholesale reinvention. But that’s what they made the internet for, now, isn’t it.

Fathers Day Without a Father

 Me, Mom & Dad . 1962

It is Fathers Day, and all the posts I started to write about my (mostly) beloved, recently departed father have dissolved into dust, sputtered out, words tumbling over themselves into the void that used to be filled by a man: my father, the photographer Jim Steinhardt. I have yet no distance.  It's too soon, I'm too raw and the tasks of cleaning up his life are still upon me.  

I've spent days in the empty rooms he and my mother so recently occupied sorting though his many thousand photographs.  Lobbing thin notebooks full of his words, thoughts, wild ideas, and great plans into boxes, I am not able to throw them out, but completely unhinged by cracking them open, watching his familiar looping hand growing increasingly wobbly as time took its toll.

I need to pay tribute to him, to our loving, complex, father/daughter relationship, but can say no more today, a day spent with my husband and sons, the menfolk of my family now.

So, if you don't mind, I will point you back to some old words I've already written about him:

Here, the eulogy I delivered at his memorial service, three months ago.

And here, about his last clear days.

And here, a post written very close to the end, about letting him go.

I will always have a father, here with me in my heart.

What’s the word?

My father has lost his words.  They have fallen out of his brain, all meaning sifted out.  Left is the dross, the building blocks of words stripped of their meanings, sounds, almost words: Ginnnggg, wishta washtra waaah, burnfurgr shtupf, gaaaaaaah!.  My father sounds like a gibbering demented old man because he is a gibbering demented old man.

And it’s the truly, fully, saddest thing in the world to watch my once intellectual, eloquent, full of ten dollar words father unable to tell us that he is in pain.  We have to look for the signs: his body tense and guarded, shifting around on the bed un-restful, his eyes weepy, his voice burred, the tone of his proto-words pleading. Then, yesterday, finally able to dredge around in his mind to find one true word: “Help!”

And yes, now it’s a lot like caring for a pre-verbal infant.  A while ago, after my father’s first big collapse, on December 17th, 2007 our family’s personal day of infamy, when he fell apart in my apartment, unable to breathe, drowning in heart failure, and 911 came in the nick of time, he had a rather awful hospitalization.

This was the day of my parents move back to Manhattan from the wilds of Riverdale.  Six blocks from my house, so I could keep a closer eye on them, so they could have a grocery store and diner and drug store mere feet from their front door, no longer confined to manicured grounds, dependent upon the whims of occasional aides and cabdrivers or the available time of their daughter to venture into the world. 

What I had not calculated was that the ambulance would feel it necessary to bring my father to the closest hospital where he had no connections.  All my father’s doctors at that time were still up North, but I was told that even though the EMTs had stabilized him with lasix and nitro, time was of the essence. 

If I had had a moment to think things through I would have pointed out that Mt. Sinai was really just as close, as the trip through Central Park is such a quick one, but I was clearly not thinking clearly, in the rush of my first brush with “oh, my God my Dad just almost died”.

And while they might have decent cardiac care in the ER, the ward my father was put into was just terrible.  Since he was stable, he did not go into the ICU, and because of his age, he was placed on a geriatric unit, where the nurses really didn’t give two shits and didn’t want to be bothered with an angry old man in pain.

So when the narcotic pain killers they gave him caused him terrible constipation and they just didn’t care, when they handed me a pair of gloves and told me they wouldn’t be able to get around to removing his impacted stool until some time tomorrow but I could have a go at it if I wished, what could I do but dig in.

This was my first bout with cringe inducing, dignity stripping physical care of my father and it was a doozy.  My big revelation after that was that while cleaning the poop off your baby’s bottom is a loving act full of joy and promise, cleaning the poop out of your father’s bottom is a loving act full of sorrow and pain.

So my father is in a post-verbal state, which is like and so unlike my children when they were pre-verbal; situationally parallel, but oh so emotionally disparate.  You always remember your developing child’s first words, but what about your deteriorating parent’s last?   How can you know that you’ve heard it, and that there truly are    no             more             words                           to                                            come?

When Jacob was a little babe, he had all the earmarks of becoming a language learner: he cooed, he babbled, he goo-gooed on time, he could and would mimic words with perfect diction. One time he reached up to grab my hand while I was changing him; “Careful” I said and he repeated it back to me, clear as a bell.  But then it didn’t happen, he froze there, he wasn’t talking.

As he got older and the specificity of his issues were becoming apparent, I realized how un-hooked speech is from language.  Language in all its human-making glory, requires communicative intent and Jacob had absolutely none. 

As time went on he could label like a champ. Hold up a cup he said "cup", show him a running faucet and he said "water', but when he was thirsty he would just cry and cry.  The parts of his brain that needed to engage to know that these wordy things could be used to communicate his needs, his wants, his feelings; those connections just hadn’t been made yet.  The first time Jake made a request, found words to be of use and not just a neat parlor trick for labeling stuff, I cried and cried in relief.

Ask anyone what makes us human, what separates us from our animal cousins, and one of the first things they’ll say is language, the ability to communicate thoughts and feelings.  As we learn more about animal communication and how they sometimes can do even that, the distinction is often further refined, drawing the human line at the concepts of abstraction and self reflection, our ability to ponder and pronounce upon the parameters of our existence.  All this, my son Jacob eventually gained, and my father has now lost. 

However, this is all such a simplification, since my father, though stripped of his ability to communicate through words, though un-moored in time and space, is still quite thoroughly human.  Those of us who have known and loved him when he was still who he was, can still see the Jim in him.

This is why we have struggled so hard to keep him home, with support from caregivers who knew him when.  If we were to put him in a nursing home, all they would see, all they would know is the gibbering demented old man he has become, and it is much harder to give loving care when that’s all there is.

My sister Lois, who works in the field of elder care, has said that Dad is not ready to die yet, because he is still processing something, even though we can’t know exactly what.  We have to trust that he’s there in his brain somewhere, doing just that, the final work of his life, getting ready to go. 

I also think of all the non-verbal Autistic children, communicating through their behaviors, communing with the infinitesimal and the infinite that we, too busy, often overlook.  These children whose loving parents know how fully human they are, who hold unknown universes inside themselves, are so often treated so shabbily by the world, cast off because they have no words to trade. 

I think how thin the line is between Jacob and his non-verbal brethren; I think about the time before words, when we did not know if they would ever come, if he would ever understand us, or live “self directed” for the rest of his life.

It’s called the autism spectrum because it stretches so far across many sometime divides, and connects us all.  As parents of children on the spectrum our hearts stretch, too, take us to places we never imagined, never needed to imagine in the time before.

And so I go about my daily life. I pick Ethan up at school, try to look like I understand as he proudly shares his latest Pokemon conquests.  I gently correct Jacob yet again when he calls the female cat “he”.  I hold my father’s hand as he mumbles and raves.

I sit down to write about it all, using words like tiny lifesavers, keeping myself afloat, here in the choppy waters of my little pond, my wavelength of the spectrum, my slice of life.

Nearly Finished Business

My mother and father in 2008

Today is March 1st, my parents’ 51st anniversary.  Not a happy one this year.  My father is 92 years and 341 days old.  Sometimes I think he is holding out for March 25th, his 93rd birthday, to die, like Shakespeare: appearing and disappearing on the selfsame day.  Although I doubt he actually knows what day it is anymore.

But today, for the first time in two weeks, he recognized me!  He woke from a nap and I heard him stirring, I went into his room and sat beside him, cupping his head in my hand.  He turned toward me and his eyes connected with mine and I saw the spark, there again, if just for an instant.  He lit up, he smiled.  “Hi, sweetie”: the first clear words I’d heard from him in ages. 

It was only for a moment, I lost him again a few clock ticks later but it was enough for today, maybe forever. 

When so much is lost, tiny things become huge, a singular moment containing in it a lifetime of love that is still there, inside of me, inside of him.  He may never find it again.  For me it will remain always.

When his worn out and straining heart finally, fatally stops, the rhythm of our lives, our love, his fatherness to me, my daughterness to him, will go on in mine.  I suppose this is why we have children, to pass on the love that is too big for one old heart to contain.   

People have asked how I can so calmly and sanguinely go about this strange business of helping my father out the final door.  How I can talk about it and even make jokes, how I seem able to be ready to let go.

It’s because I no longer need my parents to be my parents.  There is nothing more I need from them, other than just to be, until they can no longer do that.  I don’t even really think of them as parents, more like these sweet old people that I seem to find myself lovingly taking care of; my strange, large, extra children.

Years of therapy, becoming a parent myself and time, just plain old time, has wrung all the angst out of my relationships with them.  I have un-made my hot buttons, they can no longer be pushed. 

We have no unfinished business, my parents and I.  What ever my parents may have done or not done, all the unforgivable moments of my childhood have long been forgiven (except for them giving up a rent controlled classic 8 room apartment on Riverside Drive, and I’m almost over even that).  I am not waiting and longing for withheld love to come un-dammed, or explanations that have not yet and will never come.

They are who they are, they did the best they could, they loved me with all their hearts, and now we are this: a daughter taking care of her childlike parents, who need her now as much as she needed them then, as a mewling babe. 

I don’t think I could have done this, in this way, if I had not myself become a mother some years ago.  Holding my infant sons, holding my frail failing father, is all of a piece somehow. 

It is such a cliché to talk about the circle, the cycle of life, until you are deep inside it, and then it is clear.

The circle is a sphere, it rings like a bell, it beats in rhythm, the rhythm of a heart, many hearts; some new and giddy young and strong, some old, enlarged, faint and fading: the hearts, the hearts, the hearts of my family.

Soon we will be one less.

Soon we will go on.