Ethan wants to tell you about Playing with Autism

Ethan, recently

A while ago, Ethan wrote a lovely essay for school and I published it here: Ethan takes over my blog today (the world tomorrow).  Ethan loved that I shared his writing with you all, and I promised I'd let him take over my blog again.

Well, it's been two years, but he has once again written a beautiful essay for school (6th grade) and he is happy to have me share it with you here, today.  The assignment was to write a personal essay, and start with the words "I believe":

Playing With Autism

by Ethan

I believe that when you help someone or cheer them up, it makes you feel good. That is what I do with my twin brother Jacob, who has autism. Autism means his mind works differently, especially around words. It’s not really like having a twin. He is more like a little brother, even though he is bigger than me.

Play fighting is my brother’s favorite game. His favorite place to play fight is in my bed. To him, a play fight is actually reenacting part of his favorite tv show, Dragonball Z-Kai. In mid-fight Jacob started quoting an episode from the show. Then he started making weird motions with his body then got right back into the fight.

Jacob doesn’t know his own strength. I had to tell him to go easy, when he hit me so hard I could see the whole Milky Way spinning around my head!

It isn’t easy having a brother so strong, who acts so young. It’s like playing with Superman. He kept asking me to smack him harder, but I can’t stand striking him. I did it anyway. He’s not made of ceramic, after all.

During one of our battles, I ended up riding on his back like a cowboy busting a bronco, tearing through the entire house. I got pretty good at it. Maybe I should take riding lessons on a dude ranch.

Jacob needs me to play with him because he doesn’t really have any other friends. There is one girl from his school that plays on his special needs basketball and baseball teams, and sometimes they go to the movies on weekends, but that’s it.

Jacob says “Ethan, you’re my best friend!” and that makes me sad. I have lots of friends who come over to my house and we do all kinds of things together, but Jacob just has me. Jacob knows the names of all my friends and is always asking for them to come over. Most of the time they ignore him, but some of them will be nice and try to play with him a little, or answer some of his funny questions like “Who is your favorite engine?"

He is always asking me to play with him. “Play with me, Ethan. Play with me, now!” Sometimes I feel like it, but a lot of times I really don’t. When I say “no” he keeps talking to me. “Hi, Ethan” he will say, over and over again, even though we’re still in the same room. So I put down my book and play with him for five minutes.

When Jacob is grinning like a hyena, he looks so happy and I feel great. It is like his joy flows right into me. When I see him happy or just cute it makes me the happiest man on earth. Cheering him up cheers me up. There is only one thing better than seeing my brother, Jacob, happy, and that is making him happy.

*~*~*

Pretty heady stuff for an 11 and a 1/2 year old, no?

Also, in the name of full disclosure, I have to tell you that this is written from, shall we say, Ethan's best, most idealized self.  There are still plenty of "I wish I didn't have a brother" days, but there IS this kindness and empathy too, all mixed in.

Thank you, Ethan, my lovely son, for your wise and loving contribution to my blog today. I can't wait to see what you will come up with next!

The day after Mother's Day

Me and Mom on Mother's Day, 2012, her last

I couldn't write on Mothers Day, the feelings too raw, the wounds still unclosed. Yes, even here, more than a year out and counting. So I gave myself the day to muddle through.

I shined at breakfast - lox and bagels produced by my offspring and husband - but then faded midday. In spite of abundant sunshine beaming in through our windows, the winter's accumulation of grime rendering them near opaque white in the brilliance, I took to my bed in the early afternoon.

"Mom gets to nap on Mothers Day!" I declared, making it sound fun. But really it was a retreat from the empty space my mother should have occupied.

Ethan was mad that I had slept though our potential stroll through the park. Instead we had a rushed half jog along Riverside to Jake's playing field, peeling off as we got there, me to accompany Jake to his weekly baseball game, Dan joining Ethan on the basketball courts nearby.

I love my son dearly, but must admit, watching special needs sports is simultaneously like watching paint dry and having your heart ripped open repeatedly. The pace is glacial, the triumphs beautiful and painful. I sat on my blanket in the sun and baked myself into a semblance of peace.

Afterwards, waiting outside the boat basin cafe for our table to come up and Ethan and Dan to appear (hopefully somewhat concurrently, and in the right order) Jacob befriended a dog named Sophie and talked to me about classical music. He picked up a stick and wanted to conduct violins "like Squidward" so I lazily googled "violin concerto" planning to let YouTube entertain my boy. I had forgotten the landmine there.

My mother loved music. My childhood home had been filled with it, from classical to folk to jazz and then rock as her musical taste evolved through the 60s and 70s.

My mother's amethyst and glass beads moved with a sweet heaviness around my neck as I swayed to the tinny Tchaikovsky pouring out of my iPhone. My mother also loved sunshine and the water, flowering trees and children. I was surrounded by the things she loved, as I often am, she who took such joyous bites of out the scrumptious world.

The rest of my boys arrived with perfect timing and we were seated at an outer table overlooking the sunset river, just as I had desired. Ethan was a bit grumpy surveying the menu, declaring nothing to be quite to his liking and questioning why we had to eat there.

"Because I love it here. It makes me happy to eat outdoors and by the water, and it's Mother's Day so I get to choose." I was trying not to whine. I really didn't want a scene.

For once he took my answer without a fight and resigned himself to a dinner of calamari and fries, supplemented with bites of everyone else's dishes.

I then did something I rarely do, I ordered a "Mommy drink" something silly and frozen and alcoholic, because dammit it was Mother's Day. It came with three maraschino cherries on top which Ethan devoured with abandon, his first time encountering such beasts. 

"Is this what they mean when they say 'and a cherry on top?'" he asked. Yup.

We walked back home through the park as the twilight thickened, the air heavy with the promise of a soon-coming summer. Up ahead the the George Washington Bridge's majestic sway cut through the haze, spanned over to the other shore.

"Look, Grandma's favorite bridge"  I pointed out. But I didn't have to. They knew.

They all knew.

Listen to Your Mother in NYC today!!!!!

It's here!!! It's today!!!!!

The third annual NYC Listen to Your Mother show will be presented TODAY at Symphony Space (on Manhattan's Upper West Side) at 5 PM. All info HERE.

Don't have your tickets yet? What are you waiting for?  Ok, yes, you CAN just walk up to the box office at showtime and buy them (it's a BIG theater).

And it's going to be a GREAT SHOW again this year - more wonderful stories, more wonderful storytellers. And I can say that without sounding too self-serving because this year I'm "just" a producer, not also a reader.

I read two years in a row. It was a moving and fulfilling experience, but time to make room for new faces.

The best part about not reading?  No angst over what to wear, the spanx or breathe dilemma. Also, as I am working the front of the house - box office and business issues - I can sit IN the house and watch the show with the audience, which is a fabulous experience I am looking forward to.

And, as always, part of our box office goes to a charity that helps women and families. This year it's the wonderful Women's Prison Association, represented by Alysia Reiner of our 2012 cast and the TV show Orange is the New Black.

I hope you can come see our show, or, if you're not local here, that there is a show near you to go to -- because we're in 32 cities around the country this year!!!!

Thanks for all the well wishes and leg breaking already received. And now... lets DO this thing!

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.

One year ago, today

Mom, January 3, 2013

One year ago, today, I got a phone call.

A late night phone call.

One more in a long series of late night calls that began nine years ago, when my elderly parents moved back to New York City and into my care.

But this one was to be the last.

You never know it's the last.

Until it is.

4 am, I remember this one was.

Mom had fallen. Again.

I rushed to her side in the Long Island hospital her nursing home had sent her to; a cold, bleary ride in the pre-dawn quiet.

Another broken hip. A matched set. (I wrote a post about it.)

But this time my mother was older, frailer than the last time. This time my mother had already been through the ringer, and unbeknownst to anyone yet - but soon to be quite evident - she was also becoming septic from an undiagnosed infection.

A year ago today, my mother went into the hospital, and began the final, short sojourn of her life. She began dying.

I was by her side nearly the whole time.

I was with her when she passed, five days later, at 3:15 in the afternoon of January 17th.

I have been dreading the return of these dates, these days. January 12th through 17th.

They were excruciating to go through last year, every moment both drawing out and swiftly fleeting, galloping towards that end.

And when they are done, the wheel will turn; from first year to second year without my mother. It will be a different thing. And yet also more of the same.

I know everyone's parents die, eventually; that this is the natural order of things.

I know that ninety was a good run.

I know I was lucky to have had such a loving mother.

I know I was lucky to have had her for so long.


I miss her every day.