And then there were none

Marilyn, 1958

Two weeks ago, today, I buried my Aunt Marilyn, my mother's baby sister.

And now they are all gone, that generation; down like dominoes within the span of a little over a year.

First my mother, last January.

Then my dear Uncle Walter, coming up on a year this May.

And now, finally, Marilyn, passed, Sunday, April, 13th, though how she managed to live that long is anybody's guess.

We thought we had lost her three and a half years ago. And then again last fall, while I was in Raleigh, speaking at the ARC of North Carolina annual conference, telling my stories from the intersection between Sandwich Generation and special needs issues.

Instead of having a fond farewell with the wonderful people who had organized the conference and generously invited me to come speak (and paid me!) I was sitting in my rental car in the hotel parking lot, sobbing while I fielded calls from the nursing home, the hospital, the funeral home and my cousins, trying to prepare for my Aunt's imminent demise.

And then she rallied once again.

But not two Sundays ago.

In spite of the burgeoning spring, her funeral day was bitter, biting cold.  Standing by my aunt's graveside for a brief ceremony, the wind from the nearby ocean snaked through the winter coats, hats and gloves that had been donned so surprisingly on a mid-April day. Marilyn had been a winter baby, I figured this was her doing.

There were such a paltry few of us present: my little family and my cousin Jessie's - minus Aaron, away at college; seven in all. Plus the guy from the funeral home, plus the rent-a-rabbi the funeral home sent -- who was truly much better than any of us had expected, setting just the right tone of simple sadness.

For her passing was sad, but hardly tragic, more a blessing; a relief from a life she had relinquished all but the most tenuous hold to, long ago.

I was so grateful to have my husband by my side, whose Hebrew is strong, a counter to the mostly mumbled Kaddish chanted along by the rest of us.

We all shoveled a spade or two of dirt upon a lovely coffin. My niece, Jessie's daughter Ilana had brought along some forsythia from her grandmother's yard, and that too went into her grave. Though Marilyn had brought her winter to us for the funeral, we sent some spring with her into eternity.

Some more forsythia went on top of Walter's grave, atop a small pile of stones. His simple marker weathered now, nearly a year. Jessie and I discussed the stone that had been ordered, soon to come, and what to do about my mother, still sitting in a box on top of a bookcase in my apartment. She wants to be someplace I can visit her, so she'll be joining her sister and brother, mother and father on this windswept speck of flat earth, Long Island's city of the dead.

Afterwards we drove along the south shore to Point Lookout, the beach community of our childhood. There was a clam shack Walter had loved in the tiny fishing village there that seems so much more New England than suburban New York. We ate and laughed and remembered their lives.

There was not a single car in the beach parking lot, not another soul present as we walked the wintery beach.

Never underestimate the healing power of the great ocean. Or watching your children gambol upon an empty beach.

Rest in peace, Aunt Marilyn. Finally, at peace.

Goodbye, Pete Seeger, Goodbye

I used to be a great sleeper, could fall asleep on a dime and luxuriated in eight, even ten hours of zzzs, when I could catch them. Then children and menopause came around. So now, not so much so.

In fact, getting enough sleep is the bane of my life right now. I make a cranky insomniac, and though I tend to think of this as a new problem, every now and then I remember: I had a terrible sleep problem as a child. That was so long ago (I am OLD) and had been resolved for so many years, I'd nearly completely forgotten.

But yes, as a child of four, six, eight, ten, I would lie abed for hours, waiting for sleep to come, terrified of the night. And the one thing that would help? My record player. And my absolutely favorite album of all time? Pete Seeger's Sleep-Time Songs & Stories.

Without even trying I can instantly conjure his voice, telling me a wonderful bedtime story. There's Pete now, talking and singing of the giant Abeyoyo, conquered by a mischievous fiddling magician and his son; or of Sam, the young whaler, up high in the ship's eagles nest, ever searching, until... "Thar she blows!"

I was saddened to hear of his passing yesterday, of that chapter closing. But I also know, 94 is a good long run. And, as all the news sources said, he was chopping wood a scant ten days ago.  I also know he passed surrounded by love and loved ones. He passed making his mark on the century that was, and on the future rolling ever onward.

Pete Seeger was woven throughout my childhood in too many ways to begin to tell. My parents were lovers of folk music. In fact they met at the Music Inn in Lenox Massachussets, a wonderful place for lovers of folk music and jazz in the 1950s. A place Pete often played.

I saw Pete play numerous times in my childhood, most memorably at some of the first Clearwater Festivals. I remember the sun sparkling on the Hudson River, the majestic old sloop, and Pete serenading me with "Little Boxes" and "Roll on Columbia."

And then, many years later, I was working video production at the Philadelphia folk festival in 1991, where there was a Seeger Family reunion concert that year. It was clear his voice was starting to fade a bit, but still lovely to hear him sing again, especially surrounded and supported by his talented, musical family.

Finally, when my father died three years ago, an old Pete Seeger song kept playing in my head, over and over. At the end of their lives, my father and Pete looked a lot alike. (And I wrote all about that in a post, here: Why, Oh Why?)

I am still spooked whenever I see a picture of him pop up on the internet, my first thought being "Dad?" and then, no, just Pete.

So sorry to see you go, Pete.

“Why, oh why, oh why, oh; why, oh why, oh why?

Because, because, because, because.

Goodbye, goodbye, goodbye.”

This day

Mom, September 2012

I don't want the dawn to come, this day to begin.

I've been dreading it for a long time now: January 17th; the day, last year, that my mother died.

After today, it won't be "this year" that my mother died, but "last year" and I will be expected to be moving on, further from her.

And yet I find the more time has passed I seem to be tumbling further into her instead.  That final year of her life, I was so consumed with taking care of her, the frail, tentative, greatly diminished shadow my mother had become blotted out the vibrant, full-fleshed woman I had known and loved for years.

And now she has come back to me, memory after memory cascading though my dreams and waking thoughts. Though mixed and tumbled in, especially now, is the pain of those final days.

I would never, in a million years, have not been present for my mother's final moments, have let her die alone. And yet I can also say that I will never be the same, and not in a good way, for what I witnessed.

When her eyes flew open, unseeing except for her death come upon her; when she huffed and puffed and fought against the tide of her bursting, broken heart; this was seared into my brain. Her terror was terrifying, and will be with me always.  She did not go peaceful into that black night.

And then she was gone. And yet her body kept breathing. For a good five minutes still. As it wound down, I sat beside the waxy husk that had been my mother.  She had so clearly vacated the premises, but still I held her hand.  A body with the spirit fled is such a strange ghoulish thing, and yet there was also an odd comfort in sitting there.

I said goodbye to the body that had been my mother, watched it draw its last breath.

A year ago, today.

My mother is at peace.

Me, not so much so.

It's going to be a busy day today, Jake with no school, Ethan a mere half-day. There will be no time to mourn, to remember. I am a mother, my children need me. My eyes must search forward, not back.

And yes, tonight I will light a candle for my mother, let it burn through the night, encased safe in its shroud of glass; watch the flickering flame and its reflection in my heart, where her ember glows, always.

Goodnight, mom.

I love you.

Three funerals and a wedding

Last night I was at a friend's daughter's wedding, this morning at a friend's father's funeral. Three dear friends of mine lost parents this past week. You hit a certain age, and this is what the landscape starts to look like, the odds tipped towards death. I understand. (But I don't have to like it.)

Everyone who died was quite old, in their eighties and nineties.  They had rich, full lives, a long run, loving children and grandchildren by their side. These things are all good. These deaths are sad, not tragic. I know.

And yet, as a daughter who has lost a mother, I feel it all so keenly, the tears streaming down my cheeks for men and women I barely knew but whose daughters' hearts are currently breaking, as they now face the world motherless or fatherless for the rest of their lives.

Even the wedding was not free of minefields for me. It was a lovely affair, the bride in her 20s, our friends - her parents, so proud and happy. There was food and wine and dancing. After the hora, the DJ hit a nostalgia pocket, and when he dropped the needle on "In the mood" I suddenly fell to pieces, quietly sobbing on Danny's shoulder.

I had suddenly been transported back to my childhood,my mother teaching me to lindy-hop in the kitchen -- table pushed back against the egg-yolk yellow walls, kicking up our heels on the gray linoleum tiles, the cats looking on in bemusement from their warm perch atop the water-heater cabinet.

I loved and missed her so much right then.

It comes in waves like that, unexpected, never unprovoked, sometimes unwelcome, sometimes a gift. They are entwined, like that -- the loving and the missing.

And for now, I'll take it, since its all I've got.

Goodbye, Uncle Walter

Mom & Uncle Walter, November, 2012

In case you've been wondering where I've been lately....

The day after my mother passed in January, my Uncle Walter got diagnosed with stage four, metastatic lung cancer. He was given a three to six month prognosis.

Less than a week after that I was taking him to oncology appointments, visiting him in his Long Island home, spending time with my cousins - his daughters - as they cycled through town, coming in as often as they could.

In spite of how unfair this all was, in spite of his (growing) pain, in spite of his (very understandable) fear of death, he somehow maintained an upbeat, positive attitude throughout it all. He was magnificent, amazing.

Last Friday, he lost the fight. His daughters were with him for the last day of his life (I had sat vigil, awaiting their arrival).

His funeral was Monday. Family, neighbors, colleagues, friends all gathered. The rabbi delivered a lovely eulogy. Jess spoke for the daughters (Annette was too overcome to go join her at the podium) and said so many beautiful true things about Walter. And I spoke too.

It was a beautiful May day at the cemetery. Afterward we gathered in the backyard he so loved and ate and drank and shared fond memories of Walter. He was much beloved by all who knew him.

In the coming days I will tell more stories from these last three months, but for now I will just share the words I spoke at the funeral, here:


Walter was my uncle. My mother's "little brother" as she was so fond of calling him in recent years - and he was so UN-fond of hearing. Still, he put up with it with a grimacey smile because he loved his sister - his big sister Sylvia - so very much.

We were a close family. Growing up, "the relatives" meant Walter and his family - my Aunt Eva and cousins Jessie and Annette who were truly my best friends. Besides my parents, the Heimers - as we called them - were my very favorite people, the ones I was closest to, knew I would be intimately connected to for the rest of my life.

And we are.

I loved my Uncle Walter and am so grateful to have had the chance to spend so much time with him over the years -- and especially in this last year of his life which my Mother spent in the Nursing Home just 9/10ths of a mile from his house (yes, I clocked it on the odometer).

My mother absolutely loved Walter's frequent visits. Sometimes I would also be there during them, and the three of us would hang out together in the courtyard. Walter always turned the heads of staff and resident alike - he was such a handsome man, such a dapper dresser, in his suit and fedora -and mom was so proud to tell everyone who he was - her baby brother.

Walt visiting Mom at the nursing home

Every time I would come into my mom's room she was always showing me the flowers and chocolates he had brought her on his last visit. "My brother is so good to me" she would tell me, so grateful for his company, so much love twined between them.

And that love has roots that go all the way back. My mother often told me the story of going to see her new - baby - brother who had just been born. At that time they didn't allow children under 16 into hospitals, so my then 5 year-old mother stood outside the building, under Grandma Dunia's hospital room window - and she held Walter up for Mom to see.

Recently, at a family gathering, Jessie went to the basement for a bottle of seltzer and came up with an old journal of Walter's from 1941 when he would have been 14. (You never know what you're going to find in that basement.)

This entry from February says so much: "My older sister is a swell gal. My ideal. I wish she was born a boy then we could have some real fun."

And in spite of her being a girl, they did have fun, throughout their lives together. In jazz clubs in the 1940s, at family holidays - always together, on vacation in Maine, hanging out in the lush backyard of Walt & Eva's Port Washington house..

The other day I was rifling through my old photo box - you know why - and came up with a great shot of Walt & Eva from 1968. I showed it to my husband Danny and he commented: Eva looks great and Walter... looks like movie star! And indeed he did.

 

Everyone thinks my own son Ethan takes quite a bit after the Heimer clan, looks a lot like Walter. He does. I can only hope he grows up to be a warm, loving mensch like my Uncle Walter. There's a good chance of it - he already has his huge - and not always appropriate - sense of humor.

~*~*~*~

Goodbye Walter. You were loved. You will be missed. Keep my mom good company, Ok?

Perspective, again

Photo by Lucky Tran via @illuminator99

I hate this.

My heart is breaking.

For my friends.

For my family.

For perfect strangers.

For my country.

I do not understand people who want to do this.

To inflict harm upon strangers.

To turn a joyful occasion into terror and sorrow.

To kill children.

I know human beings can lose their humanity.

It happens in war.

It happens in homes with the doors closed and everything looking just peachy from the outside.

I understand it with my head.

But not my heart.

Never.

~~~ * ~~~

After a long (for me) hiatus, with my head too wrapped up in other things, I was finally ready to post yesterday. About something lovely that happened with Jake the other day. Something small. Sweet and joyful.

And then Boston.

And then I just couldn't.

And I know life goes on.

But still, we must take pause.

I was walking home with Ethan, after school pickup yesterday, when we heard a man yelling; shouting, screaming on Broadway.

Fearful it was another crazed homeless man (one had badly frightened him a few years ago) I looked about and saw just an ordinary young man with a cell phone.

"No, no, no, no, no! What happened?" he said when words returned after the screams of anguish subsided. "Were is Meagan? Is she all right? Is she alright?"

Ethan and I kept walking. He was concerned. I assumed it was a personal matter, a car accident, maybe.

And then we got home, and Danny told me what had happened.

Ethan wanted to know more, and didn't. And I was torn between sheltering him from the horrors of this world and trying to honestly explain the evils in it without unduly frightening him.

I settled for a middle ground.

And he fell asleep last night easier than I did, sitting benumbed on the sofa, parked before a TV showing me over and over again things I did not want to see or hear yet couldn't tear myself away from.

I have dear friends in Boston. Family. All safe. (There but for the grace...)

~~~ * ~~~

In days to come I will tell you of Jake's small triumphs, of Ethan's growing obsession with Magic the Gathering; share photos of the boys' spring haircuts, talk about how wonderful this year's Listen to Your Mother show is going to be and encourage you to buy tickets.

But today, now, I will simply take my pause.

Reflect on how tiny my troubles appear in the light of larger tragedy.

I am getting tired of how often the world gives opportunity for this sort of perspective these days.

Wishing peace for those suffering.

And light and love to enter the hearts and minds of all those who would do such a thing, rendering the unthinkable, unthinkable once more.

Nothing about this is easy

I am unlovely in my grief.

Underslept, rarely showered, breaking out. My face a blotchy patchwork of red and too pale. A total mess, ten days on now.

Wait, it's eleven. Soon it will be two weeks. Soon it will be the memorial service come upon us.

And I have a eulogy to write. Photos to dig up.

Mom's ashes to collect. (I got the call today, but I couldn't; I just... couldn't. Not yet. Maybe tomorrow. Maybe if Dan comes with me.)

I have so much to do; so much todotodotodotodoooooo.

And I want to do absolutely nothing.

To stand still, frozen, like a winter tree, just being for a moment; no leaves, no flowers, no pesky photons to synthesize from. Just standing; my roots dug in, holding me up. Life still flowing at my core, but you wouldn't know it from looking at me.

I flip, like a flopping, water starved fish on deck, back and forth back and forth: I want to be left alone / I have to be with people.  From minute to minute I never know what I'll need.

I go see friends then run away and hide in the bathroom. I banish everyone from the house, then frantically call my cousins to talk.

When my father died, I had to take care of my mother, to be there for her. I had her to mourn with; I had Bruce and Lois, my father's other children from his first marriage, by my side, making all these terrible arrangements together.

But I am my mother's only child, and she is the second parent gone. So there is no one else. Just me. I am the sole surviving member of the nuclear family of my birth.

(And yes, there is the family I chose, the family I made, and I thank the heavens every day for their existence. But it's still not the same.)

I feel greedy and selfish taking time away from my family to mourn, from my children who need me as much today as they did two weeks ago. And yet even here I am hardly here, translucent, worn thin as the cotton of my mother's ancient favorite nightgown.

(More sad tasks on my list: drive out to Long Island to retrieve her boxed-up final belongings from the nursing home. And then what do I do with her teeth? Her hearing aid? I can neither throw them into the trash nor keep them.)

I took her glasses from her face in the hospital ER, promised to give them back when she was up to the task of reading again. I carry them around still in my pocketbook, come upon them when fishing for change and keys.

I put them on though they blur my vision, not cure it.

I want to see through her eyes; I want to see her clearly.

I want the sadness of the last, broken, lonely months of her life to wash away in all my tears. I want to remember the woman who loved birds and cats and babies and champagne and modern art and handmade things and the Chrysler Building in all its art deco glory. The woman who reveled in the crystalline beauty of the natural world.

The woman who loved ME so deeply, so fiercely, so freely; who loved me as only a mother can love a child.

I whisper in my children's ears (now, mostly while they are asleep): "I will always be your mother, and I will always love you."

She taught me to love like that, my one and only mother.

Me, her one and only child.

Sylvia Steinhardt: September 2, 1922 - January 17, 2013

Mom & me, 1960

Just after 3 pm, on Thursday, January 17th, my mother, Sylvia Steinhardt, took her last breath on this earth.

In spite of her numbers "looking good," and her seeming stability, there had been a subtle shift: she was no longer truly present in the hospital room. She had been drifting all morning, not really speaking to me, but rather mumbling dream answers to questions only she could hear.

She would not open her eyes, and when she did they fluttered for a moment then clamped shut again.

After having spent nights in her room (or sofa surfing with nearby friends) when she was clearly in immanent danger, I had just begun returning home to sleep. On Thursday I had come early and was planning to leave early, too (in time to pick Ethan up from school) but some instinct, ineffable, tugged at the fringes of my mind, telling me to stay.

And thus it was that at three in the afternoon, when her heart could no longer keep up, I was there...

Oh, my mother...

Your eyes popped wide open. My face was right before you, but you were not seeing me. You felt your heart unwind.

I cried out, a sob torn from my chest, cast wildly about the room for someone to do something for just one beat of my own heart, then remembered there was nothing to be done, but bearing witness.

I turned back to you, held your hand tight as your grip went lax, eyes slammed shut, then sunk further inwards. I placed my right palm upon your forehead, but all the heat that had been there, bright your thoughts, your spirit, had already flashed away.

Your breathing slowed, caught, hitched, came as an afterthought.

You were leaving me. You were nearly gone.

I had told you it was okay to go, had whispered in your ear that I knew how tired you were, how in need of rest and cessation of pain, of peace. Had given you my permission to go.

I wanted to take it all back, to beg you to stay.

But it was too late.

The visible pulse jumping in your neck quieted, and quieted again.

Your last breath was so small, barely a breath at all.

And you were free.

***

Mom...

from beautiful little girl...

Mom as a five year old flower girl at an Aunt's wedding, 1928

to beautiful old lady...

Mom, Thanksgiving 2012

you were always a class act, my dear darling mother, your own unique self.

Know that you live on now and forever in me and my sons.

Thank you for everything, Mom.

And rest in peace.

Motherless

Mom & Me, Mothers Day, 2012

How could it be?

I woke up this morning and the world was still still here, popped into existence when I opened my eyes; the sun held high in the firmament, the bustling sounds of city life washing in through my air-cracked window.

How could it be?

The world in existence.

Yet diminished, greatly reduced, by one soul... gone.

Sylvia.

Mother.

How can the planet spin onward when she is no longer here?

And yet, it does.

Jake went to school. Ethan stayed home.

I am busy with a thousand phone calls I do not want to make, yet must.

Calls to tell people.

To make "arrangements."

Calls that involve the word "body."

(The husk that's all that's left.)

I shut down to do this. It's the only way.

***

I watched her go. I held her hand. I kissed her forehead, cooling.

***

I have mothered my mother for so long, it feels more like a child has died than a parent.

I keep thinking, routinely: "What do I have to do for her today, tomorrow, next week?"

And the blankness that comes back is cold and white with nothingness.

And the Kate Bush song echoes in my head: "All the things I should have done, that I never did."

Because even 52 years together are not enough when you want more.

And I am greedy.

I wanted more.

But there is no more.

She is done.

This last fight was beyond her.

The pain was too big.

Her heart valve too small.

She was tired, so very tired.

And now she is beyond the suffering.

(at peace.)

And I am motherless, forever more.

That train is coming...

I am sitting by my mother's side. again.

Watching her breathe. again.

But not for very much longer.

She is dying.

It's not just a broken hip.

It's a broken heart. literally.

And an infection that has gone septic.

Blood that won't clot, or that may actually be forming tiny clots within itself, and therefore not where it is actually needed.

There are all kinds of official medical terms for these things, and I know them; have heard all sorts of acronyms flying about the ICU that will surely be the last room my mother occupies.

But is comes down to this: her body is worn out, as is her spirit.

There is no more fight left in either, only pain and suffering.

And it's soon time for that to come to an end.

I thought it would be last night, came barreling back to the hospital through rain and fog, having arrived home at dinnertime and stayed through putting the kids to bed; all while fielding phone calls from nurses, doctors and family members.

I walked into her room here in the ICU a shaggy mess, expecting to find her the same. But somehow in the hour since I'd last phoned in, her blood pressure had normalized and her heartbeat reigned in, no longer pulled by stallions, champing riotous at the bit.

"Your mother may not last the night" was still a possibilty, but no longer a softened, near certain prognosis.

And, indeed, she stayed the night.

This morning a nurse woke her up in the wee hours to administer another shot of vitamin K, attempting to stem the blood tide. "Thank you" my mother responded, astonishing the nurse who told me she had never been thanked for an injection before (more frequently cursed, I assume). That's my mother: gracious, grateful, full of love. And sorrow.

"Tough old bird" I whisper under my breath as I kiss her forehead once again.

How thing-like a body becomes when it is old and broken and clinging to life with tendrils weak and brittle as snow-scorched vine.

And yet my mother's hands are strong still, fingers wrapped, embracing mine, one of the few points of physical contact not obstructed by tubes and wires, her whole body a minefield of pain.

She looks like a fighter pilot: mask covering nose and mouth, offering air ever more oxygenized as her lungs are capable of absorbing less and less.

And fighter she is (tough old bird) clinging still to life, diminished now to this room, my hand, my voice, a cup offering ginger ale through a bendy straw.

She is still here.

I am here with her.

She knows I'm here.

And, for now, that's enough.

There but for fortune

My Jake

"I love you, Mommy."

He says it quietly these days. Sometimes loudly. Spontaneously. At the dinner table last night, as I sat down. Often enough to almost take it for granted. Almost. But also never. Because my boy is autistic.

Because once I did not know if Jacob would ever say "Mommy" let alone "I love you."

Once I did not know if ever there would be conversation, a back and forth, a flow. And now, of course, I find myself begging for a break from Jake's constant need for engagement.

The conversations are odd, of course, bringing smiles or bewilderment to the faces of the folks waiting at the bus stop with us (for the dreadful will-it-ever-come M104) as we repeat topics over and over, revisiting them cyclically as the waiting goes on and on, and Jake walks in circles, tighter or wider, to relieve the anxiety of the when-will-the-bus-come unknown.

There had been good news from the ophthalmologist: Jake no longer needs glasses. Another thing we had thought might never come to pass. But of course my son being a creature of habit greets this news with none of the joy his twin brother Ethan had three years ago, upon the same pronouncement.

"I. Want. My. GLASSES!" he bellows as I explain patiently (for I knew this would involve much patience, greeted this "good" news with trepidation, fearing just such a reaction) that "the eye doctor says you don't need them any more, the glasses did their job, they're finished."

Jacob's school's half-day Friday had seemed the perfect opportunity for his annual eye exam. And it turned out fortuitous in so many other ways, as I had a real need of my son that day. A need to see him, to hold him tight.

My community was hit by tragedy Thursday: a family lost two children to unfathomable, senseless violence. And when I say my community, I mean more than just we live in the same neighborhood, I mean we have a connection to this family (although I do not know them personally). 

There was a bit of the same feeling around the Upper West Side right afterwards as there was on 9/11: a sense of shell shockedness, a sense of there-but-for-fortune-ness. Not as universal, more of an echo; but still, more than a bit spooky.

"Why? why? why?" drummed over and over in my head as I walked about the streets. Taking Ethan to school Friday, morning the parents were out in full force. Those of us who often send our kids in with "the neighbors" could not seem to do it, needing to kiss their heads personally at the last possible moment and watch their backs recede into red brick buildings.

So many of us appeared with eyes dark circled, earned from 3 am checks of our slumbering children. How long had it been since I had stood in a doorway, watched two small rib cages rise and fall in the near darkness?

My mind kept curling back, all day long, to the mother, the family. The mother (like so many of us) employing others to watch her children, in spite of being an at-home hands-on mom, because when you have more than one child, having help is... very helpful.

I return again and again to the screaming everyone says was bloodcurdling, primal, knowing that such sounds would be erupting from me were I ever to come upon my children, likewise undone.

I cancelled my Friday evening plans (an old friend's play). We sat together for a family dinner, dusting off the Shabbat candlesticks and lighting them, finding comfort in familiar, in ritual, in ancient things that continue.

Finding more than comfort in my son's words as I sat at the table; "I love you mommy" taken for granted never, appreciated now more than ever. And now I attempt to embrace sleep, to resist the siren call of watching my children slumber, reassuring myself of their continued existence on this planet.

If will alone could protect them, keep them safe all their lives, then all our children would live forever.

And so I hug my sons a little tighter now.

Please hug your children every day.


Finally, I can never say or think the words "there but for fortune" without hearing Phil Ochs sing them. So here he is, now doing just that:

Week in Review (with pictures!)

I'm still pinned to the wall, a bug squashed against the windshield of life.  And yet I want to check in here, to let you know...

Some things this week went right:

Ethan & friend preparing to launch on camping trip

Ethan had a great 3-day overnight camping trip with his day-camp. He's been watching the older kids do this for years, and now he finally IS them. Perfect weather. Good friends. Kid food galore. And he came home only slightly sunburnt. Total win.

Jake asked for and got a haircut Friday, and is very happily telling everyone about it.

Before the cut

Haircut! (Handsome boy)

I had a lovely, long visit with my mother Thursday. I gave her a manicure, a lenghty process as I have to do one hand at a time and let it totally dry before doing the other one.

This is because she has a need to blow her nose. A LOT (she has a two tissue box a day habit). And so if I do both hands at once, one gets ruined in the nose blowing/wiping process. She just can't help herself.

Mom, showing off manicure

I went to dinner with her, which was a good thing as I found out that in spite of my talking to the nutritionist at intake, she was getting food she really dislikes. No wonder she isn't eating enough and is losing weight.

I looked at the tough hunk of "pork loin" on her plate and asked why she had chosen this for dinner, as I knew it was not going to end up crossing her lips. "I don't choose, they just bring me food." was her reply.

"Mom, you fill out a menu choice form." I remind her. "No," she says "I don't. They just bring me food. I don't like a lot of it."

So those menu things they bring each week that she's supposed to be circling her choices on? She was just adding them to the pile of papers on her dresser. Had no idea what they were for.

It seems no matter how many times you tell people your mother has cognitive and memory issues, because she is so bright and with-it in the moment, they treat her like she is capable of a level of self-management and decision making that she really just isn't.

You can't just hand her a menu and tell her to turn it in later. You have to sit with her and ask her questions. Fill it out for her. Really. 

I had a long, possibly LOUD talk with the head of dining and now *I* will get the weekly menus to make choices for her.

After dinner (a nice piece of fish was hastily procured for her, and she ate a good half of it!) I took her outside into one of the courtyards. It had been too hot early in the afternoon when I had arrived, but by six thirty was delightful.

Mom loves flowers so. It lifted her spirits immeasurably to sit in a garden, even a somewhat scraggly one. And it was the perfect place for me to give her a good shoulder / neck / back massage (as I try to do every time I visit).

I left her in her room, digging in to the new puzzle book I'd brought. She had been awake, alert and lively for the entire visit. A vast improvement over past weeks, and even just this past Tuesday. Step by step. Bit by bit, coming back to life.

And then I was on to see my aunt, uncle and cousins, not even a mile from Mom. We sat in the yard and drank in each others company and cocktails (virgin for me, drive home ahead).

Flower in my aunt & uncle's garden

How much I love my family can not be measured. How they are circling round the wagons, all come in to care for and spend Eva's last significant days with her, so beautiful to see.

Greta, 14, borrowed my iPhone to take "selfies"

And Eva herself had a bit of a rally. Was asking for food. Small bits, but still, strawberry ice cream, blueberries, tiny bites of all sorts of treats were being gobbled up.

I left late, after dinner and many laughs and hugs.

Passed yet another major accident on the highway. Grateful, again, that it wasn't me. Grateful for so much, as I wearily made my way home.

Burnout Factor

Me & my Aunt Eva, 1992

It has been days since I have written. I am not wanting to write; and I ALWAYS want to write.

I even missed my Hopeful Parents day on Monday (I will somehow write that post and put it up tomorrow, better late than never).

It's not just the busyness. I am always busy.

I am just seriously tired of what is running around on the hamster wheel of my brain right now.

I am tired of death and autism and special needs and medications and doctors and insurance companies and death and care-taking and dealing with medical establishments and death and clutter and real estate and paperwork and death and money (the lack thereof) and death.

I have had too many conversations about cemeteries and plots, about hospice protocols, about funerals.

My Aunt Eva is still with us for now, in that childlike state some people enter in the process of dying.

Annette says she has moments of playfulness and energy when she will awaken and smile beamingly at everyone gathered around her, lift her hands up by her face at wiggle her fingers, the wordless way one plays with a baby. And yet, she is the baby this time.

She speaks rarely, and sometimes in German, her first language. When Annette shared this I remembered something my husband had told me, of how his father, slowly dying in their apartment when he was a teenager, babbled away in the Yiddish of his childhood for the last few weeks of his life.

I'll be seeing Eva today. Saying hello and another possible goodbye. I'll be able to manage a long visit with my mother, too, as Ethan is off on a three-day camping trip, and thus I don't have to rush back to the city to pick him up at 4.

On Tuesday, driving out to Long Island, what is usually a fast, against the flow of traffic trip ground to a screeching grinding halt early on, in Queens. I figured there had to have been an accident, and there were, in fact, TWO on the Grand Central Parkway at the same time.

Eastbound, in my direction, it was just a minor finder bender, but a little further on, Westbound, was a major conflagration. Not just due to rubbernecking, as there was an emergency vehicle in the left lane of our direction, I passed so slowly that I looked over to the other side, just to see what the hell was going on that could snarl traffic in both directions so thoroughly.

And in that moment I saw a white sheet being lifted up, an outflopped arm - tanned, male, short sleeve blue uniform shirt - being placed back within, once again enshrouded.

I couldn't unsee it. It played over and over in my mind. A fatal accident. I tried not to take it as an omen. I was ever glad that I was alone, that the boys weren't with me, that questions did not need to be asked and answered.

Ethan is already a little over curious about car accidents, thrilled with the tale I told him of the near disastrous crash Dan and I were in on our honeymoon.

I have not yet spun for him the tale of the taxi cab fatality I witnessed, was a part of, one morning newly pregnant with him and his twin.

But it came back to mind a lot Tuesday, one tragically dead body calling up the ghost of another.

And really, could everyone just stop dying for a while. I want to write, think about something else for a change.

On Tuesday I made my mother promise to stick around until her 90th birthday in September. "We'll celebrate together!" I'd told her, as Annette, Trina, Mom and I munched on cookies from the Hungarian Pastry Shop I'd brought out with me.

"I'm planning to live to 100!" she'd reassured me.

A promise I hope she''ll keep.

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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A Full Moon for Susan

photo by @Mammaloves aka Amie Adams

Sunday evening, walking out the front doors of the Museum of Natural History as it closed down for the night and they shooed us out of the halls of planetary and earth sciences, as we tore ourselves away from the looming bones of ancient giant lizards, a big, beautiful, near-full moon held court in the deepening blue sky, a gleaming white marble suspended over Central Park.

I stood at the top of the stairs, arrested by its majesty, and refused to walk down the steps until both my sons had stopped and paid homage to its luminous presence.

And I thought of my amazing astrophysicist blog-friend, Susan, of how she has always encouraged us to share the night skies’ magic with our children. And I thought again of HER courage, grace and luminosity as she was currently facing the very endgame of her long battle with metastatic inflammatory breast cancer.

Susan Niebur AKA @WhyMommy

Then last night, with my children eagerly tucking into their supper, I stole a moment at the computer to try to write a post for my 2 year Blogaversary, but instead my eye was caught by something at the top of my sidebar blog-roll: a new post from Toddler Planet titled, simply “Goodbye.”

A lead weight crashed into my heart. “Nooooooooo!” I howled in my mind as I fearfully clicked over and saw that Susan was indeed gone.  I burst into tears, had to calm frightened children and explain.

In that post, her husband, Curt shared the devastating news with the same grace, love, honesty and generosity with which Susan had lived her life; faced her impending death.

The saying "to know her is to love her" is oft used. But I can think of no one that applies to more aptly than to Susan Niebur.

Susan's battle with Inflammatory Breast Cancer, a little known form of the disease that presents without a lump and is often mistaken for mastitis, went on, with ups and downs, for 5 years.  It was very public as she blogged, wrote, and spoke about it; worked with foundations and organizations to  spread awareness and encourage research.

She created Mothers with Cancer to support other mothers with cancer, and also, very practically, she helped to get compression sleeves to women in need, who, like herself, had arm swelling problems since the removal of their vital lymph nodes.

Susan pushed and rallied herself, set aside self pity and made Every. Moment. Count. in a way I had no idea was possible outside fairy-tales. She was no saint, she was a feisty, full of life, flesh and blood woman. And while others would have been consumed by rage about dying young, her attitude was "I don't have time for anger."

She endured the excruciating pain of her disease and its treatments with something that was not stoicism, but rather a fully emotionally present acceptance. She willed herself to push past the pain and exhaustion because every moment that could be salvaged and spent with her children was a moment to be cherished.

She loved her children fiercely, and tenderly. She had, in Curt, a partner who loved and supported her with amazing strength and resilience and patience and fortitude. She had an incredible support system of family and in-laws and friends upon friends who rallied around her. Team WhyMommy stepped in and stepped up.

When it became clear that the battle was lost and nearly over, that it was just the end game to be played out, she faced that too with astounding grace and compassion. COMPASSION as she lay dying, I sincerely doubt I would or could be capable of that. And yet it was just who Susan was.

She was, quite honestly, one of the bravest and most admirable women I have ever had the fortune to know.

And on top of everything else? Susan was an astrophysicist. She was a connector in a field where there is often isolation, awkwardness, the very nerdy field of Astronomy. But even more than that she was a champion of women in the planetary sciences, an encourager of girls to go into science, a wonderful role model.

Most people don't know this about me, but I almost became an astronomer. I loved the courses I took in college, and my teachers there were very encouraging, told me I had "the gift" of understanding astrophysical models. I had loved the stars and astronomy as a child, dragging my mother through the halls of the Hayden Planetarium numerous times. sitting rapt and breathless, quivering with excitement during the planetarium star shows while my Mom took an expensive nap.  But I ended up making other choices. One of the factors driving me from it was the isolation factor.

So Susan was living my discarded dream, joyfully, and I loved and admired her for this, too.

I will think of Susan every time I look into the night sky,

And I am mad, mad, mad that the demon cancer took her. Took her away from her husband and young sons. Too soon, my god, too soon.

We had only met in person once, in the summer of 2010 at the BlogHer conference here in NYC.  At the time I was a blogging newbie, 6 months in and still green behind the ears. Somehow I had a huge group of bloggy connections in the DC moms, and they had come up in en mass, in large part to support Susan who was a BlogHer Voice of the Year keynote speaker that year, as well as my friend Stimey who was on the amazing "Blogging Autism" panel.

Susan in hotel room at BlogHer1o (photo via TeachMama)

I was going out to an event with a member of the DC cadre and we'd had to pop up to her room for something. Susan was there, resting on the bed, slowly getting ready for the evening. She sparkled. We hugged; very carefully, very gently. And there was more overflowing love in that hug than in any 10 full-on bear hugs I have had before or since.

Susan BlogHer10 VOTY Keynote address (photo via TeachMama)

I am eternally grateful we had that moment. I ran into her again and again over the course of the next few days, heard her amazing VOTY address.

Last night I spent the hours after I'd put the boys to bed hunkered down by my computer, refreshing my twitter feed, tuned to the search word: WhyMommy. I read and read and read all the words that were flowing out into the cyberverse from the people whose lives she had touched: from the dear friends in her "real" life in DC, to her close blog friends she would meet up with at conferences, to the thousands who knew her only through reading her blog, but never before commented or exchanged words.

We are a community of mourners. But also a community whose lives are full of more light because she walked among us and spread her light, inspired us in everything she did. 

Please harken to the words of her husband, Curt in his farewell post:

"Please consider furthering Susan’s legacy through a contribution to the Inflammatory Breast Cancer Research Foundation.  Or please choose to make a difference somewhere, anywhere, to anyone."

Also, hug your children tightly, play with them, listen to them with more patience tonight. And know that in doing so you are honoring Susan's legacy, too.

The internet is now FULL of tributes to this amazing woman. Go, read them all, know more about her and how she touched each and every one of us to the core no matter how essentially or tangentially she was actually in our lives.

Tonight, the moon is full at 4:53 PM East Coast time, and I am sad that it shines down upon a world without Susan in it.

I am not ready to say goodbye to her. None of us are. And yet here it is. Time.

I will always remember the love that radiated from her as we hugged hello, and the light that shined from her eyes, always. The honesty and emotion that suffused her words, how she gave of herself fully, every day of her way-too-short life.

Susan thought long and hard as she knew her days were coming to an end, and distilled her philosophy down to these words:

“All that survives after our death are publications and people. So look carefully after the words you write, the thoughts and publications you create, and how you love others. For these are the only things that will remain.”

She is now up there in the firmament, among her beloved stars. And remembered with love here on earth, by a multitude, forever.

Goodbye, Susan, goodbye.

Star trails above Australia (via time-lapse photography), in purple for Susan

Photo credits: Spiral Galaxy by Calar Alto Observatory via NASA, Star Trails by Lincoln Harrison via Pinterest


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Imagining the unimaginable

On Friday I received a chilling set of Twitter messages from my friend Alexandra:

I went, I read, I left a message. Words, just words, but they were all I had. No one could do what we all wanted to: turn back time's hands and undo the undoing of this boy.

I cried and cried for a boy I didn't actually know, the son of a woman I had never met. But whose words I knew. A woman like me: a blogger, a mother.

The mother is Anna See, of the blog An Inch of Gray.

Her son is/was Jack.

12.

Now, forever.

He was playing in his friend's yard. A back yard just a few houses away. Just a typical boy, at play. The creek had breached its banks. He tumbled in, was swept away.

And just like that, a light is snuffed out, a life is gone.

Unimaginable.

But not to me, the mother of an autistic son.

Tragedy is not distant, but in fact stalks me. It's the shadow that walks by my side always, the fear that because of his autism, because he understands the risks of the world so much less than a typical child of his nine years, my son Jacob will be lost.

Swept away.

That chasing a pigeon or ball bounced wrong he will run into the street...

That drawn to water, as so many autistic children are, he will step into a river too rapid, fall into a pool too deep...

That with his friendly, too trusting nature he would walk off with a seemingly kind stranger without a backward glance...

That, strong, willful boy that he is, he will loosen himself from my hand when we are in the ocean and be carried out to sea...

That, large boy that he is, he will walk up to an armed police officer, saying and doing something innocent but seemingly provocative when he is no longer a still cute 9 year-old but a six-foot-plus seeming adult teenager...

That, curious boy that he is, he will take one step too close to a raging, flood-swelled creek, and be swept away.

I know, I quake, that one short twist of fate could put me right into Anna's awful shoes.

So I weep for her, and for all the mothers who have lost their young.

And I hug my sons a little tighter, watch over them a little more hawk-like. Knowing it can never be enough. That the unforeseen moment of disaster can not, by its own nature, be seen, known, avoided.

But still, the instinct is there. The magical thinking: "I can keep my children safe."

But I live with these statistics: Autistic kids are often bolters, runners, escape artists. Approximately half of all autistic children wander, at least once. And the number one cause of death among autistic children that wander? Is drowning.

We like to think this cannot be us, our family. But it can be. In the blink of an eye, a moment's distraction; a step taken into exactly the wrong place at the wrong time.

Anna is an incredible woman, capable of tagging her memorial post for her son "thank you for loving us" as well as "heartbroken."

So go there, now, leave her family your love.

Write your own post for Anna, and link up here, where Kate of The Big Piece of Cake is gathering them all. (And read them.)

Our hearts pull toward Anna's. We offer words of solace knowing they can never fill the empty son-shaped space on this earth.

But they are what we have to offer her.

Our words of love.

Our prayers, from those who pray.

Our sisterhood, no less real because it is digital, ethereal.

As her son is no less real, now that he lives on in memory, in spirit, and on Anna's blog, smiling his incandescent smile.

Beautiful boy.

Forever 12.

(Anna, you and your family are in my heart, tonight and forever.)


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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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