Light all the candles (8th Night of Hanukkah)

menorah on 6th night

It is the 8th night of Hanukkah tonight, and so we're done. Hanukkah came early this year, putting us at a bit of a disconnect with the rest of the country. We'll be well all done before the Christmas frenzy is in full bore. But so it goes some years.

Last year Christmas Eve was the 5th night of Hanukkah, the holidays overlapping nicely. Next year, thanks to simultaneous oddities of the standard western and Hebrew calendars, Hanukkah will actually cross paths with Thanksgiving, beginning the night before!

I'm still weaving in and out of my seasonal ennui, some days lighter, others darker.  Holidays are always about family, family, family and I am missing some members of mine. This week the universe conspired to remind me of my father constantly, now gone nearly three years.

I sat down to get a cup of coffee in the middle of the day on Wednesday and gather my thoughts, when I noticed the man seated next to me in the cafe, heartily enjoying a bowl of potato leak soup, one of my father's favorites. I just had to get a some myself, the silent tears dripping off my face and dropping into the bowl rendering it a bit on the salty side. Just how Dad liked it.

I was thinking about the last months of my father's life, how even up until the very bitter end, when he was barely eating anything, becoming more of a skeleton day by day, I could still often get a little soup into him, if nothing else.

Nabeyake udon or vichyssoise, pasta fagioli or avgolemono, clam chowder or chicken noodle, goulash or gazpacho; the man loved soup. And every time I make some, I conjure Dad up, if just for a little while.

And then on Thursday night, my husband and I got to spend some time with dear friends who are a generation older than we are (but young, so young in spirit and full of life).  I love them to pieces and we had a wonderful dinner and lively conversation and I enjoyed every minute of it while simultaneously feeling so sad that my father is gone and my mother fading fast. And there was our friend Al (OK, I'll name drop: Al Jaffe) a year older than my mother, but still working, still living completely independently (yes, it probably helps that his lovely wife Joyce is a decade younger, but still, that makes her no spring chicken herself).

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OK, this post was supposed to be going up yesterday, on & about the 7th night. I had written this much by Thursday and was going to finish Friday. But then I came home from my intense all day appointment in Brooklyn (the impartial hearing concerning Jacob's schooling) having been pretty much in a bubble all day, to find the news... the school shooting... all anyone can talk about, think about. And I froze.

How can I write about a cheerful holiday, about missing my father who got to live a long, fulfilling  life and become really, really old before he died, in the wake of this immense and senseless tragedy, in the wake of twenty dead children? And yet, there were my thoughts, up until Friday evening.

And so I am walking around dazed and shell shocked today; doing what I have to do, boys to basketball, lighting the final menorah, feeding everybody and washing up the boys weekly five loads of laundry. Because life, for the living keeps going on.

I cannot write about Newtown yet. I don't know if I ever will. There is no sense to be made of it. And, for once, I truly have no words. Except to say that we need vastly better mental health services in America, and with less stigma attached to getting them when we need them.

And so I'll end here, rather abruptly perhaps, because there is no way to stitch this into a smooth and seamless post. There was regular life, skipping, trudging, shuffling along. And then... the thousand ton boulder dropped into the middle of it. And aftermath. There's always aftermath.

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To conclude: last year I shared the Maccabeats & Matisyahu's wonderful Hanukkah song with you, this year I'm sharing a new song from Matisyahu... and hoping everyone had as happy a Hanukkah as possible, in spite of all the insanity and tragedy in the world.

B is for Best Friend

B is for Best Friend

Jake doesn't have one.

Not a bestie, not a buddy, not even a one.

Not. one. friend.

Ethan? Has a flock of friends; plays elaborate imaginary games with them, involving 10,000 characters with names like "Flareon" or on screens in parallel universes vanquishing foes with, and acquiring goodies for, their associated avatars.

And Jake? Wants desperately to play, to interact with other kids; but has no one who will give him the time of day.

And this breaks my heart.

This is who Jake now talks to and plays with all day long:

Yes, it's George, Curious George. George is Jake's best and only friend. He's stuffed. Very accommodating. And completely non-judgmental.

In the playroom Jake sits him in the little red car (that he no longer fits in himself), and pushes him all around. George is who shoots baskets with Jake, and slides down the big slide with him.

Seated next to him at the table, George is who Jake's dinnertime conversation is mostly directed at. Better than nothing I suppose. But still, I can feel how he longs, how he yearns for a human kind of companionship.

The other day in the playground there was a child who kindly responded to Jacob's awkward overtures for a while, and it made his day.

It was the first glorious spring day, come late into our interminably long and grueling school "break."  I had hauled Jake and Ethan out of their electronic boy-cave, blinking into the sunlight, to meet up with a friend of Ethan's in the park.

We'd ended up in the Hippo Playground, where there are large fiberglass hippos that can be climbed upon and most importantly in, too.  Jake was inside of one, his head sticking out between the hippo's gaping jaws, roaring at all who passed by, and this one boy, about Jake's own age, thought that was funny, roared back at him.

Jake was thrilled to find someone willing to speak his language. And since these were, after all, sculptures of wild animals, this was not way too odd, too beyond the pale.

There was no screaming going on, so I parked myself on a bench, allowed myself a distracted moment of Twitter, looked up when Jacob appeared in front of me with a question: "Where's Daniel?"

I was confused "You mean Daddy?"  "No," Jacob answered "boy Daniel." And then I understood, Jacob had actually managed to extract a name, all on his own. "You mean the boy in the blue shirt that you were playing with?"

"Yes!" beamed Jacob. "Where's he at, boy Daniel?" and together we scanned the crowded playground for this now familiar person. Spotted on a jungle gym in the distance, Jacob bounded off as I waited on tenterhooks, cringing, hoping, prepared to spring into mother-bearly action should there be rejection, a need for intercession, explanations.

But the gods of autism were smiling upon Jake once again, and this boy surely had a kind and generous nature.  For he roared at and chased Jacob a few steps, laughing, happy to go along with the odd request.

And when Jacob roared at him he obligingly shrieked, aped mock fear, ran a few paces then spun back to smile at Jake, before returning to his other friends, playing other, bigger-boy games.

And, nearly unbelievably? Was willing to give it a go again, and again, and again as Jacob returned for round upon round of "growl and chase." This boy, Daniel, never turned mean, never turned on him, just cheerfully went along with the program.

And so, for one day, Jake was just another kid on the playground taking up with a found friend for a while, as kids, regular kids, are wont to do.

And my faith in the goodness of humanity, the kindness of strangers was restored.

It appears that B is also for Best. Day. Ever.

This post has been inspired by and linked up to Jenny Matlock's Alphabe-Thursday writing meme. And aren't there so many nice words that begin with "B"? Like: Beauty and Butterfly. But were my kids to choose? Probably: Burp and Buttocks at the top of the list. I have mentioned they are eight year-old boys, yes?

I'm also linking this post up to Maxabella's I'm grateful for...  because I am truly, deeply grateful for kind children like boy Daniel.


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REALLY Wordless Wednesday: The Week in Pictures

I can tell a story in pictures, I can tell a story in pictures, I CAN tell a story in pictures.

OK, who am I kidding?  You know I'm going to throw at least a few words in there (me being me and all).  But today?  I'm trying, at least I'm TRYING, to keep them to a minimum.

So, maybe it's not REALLY wordless... how about NEARLY wordless?  Here goes:

We had: SNOW!

Snow + Ethan = snowballs!.

Ethan got a HAIRCUT!

Before: shaggy as he wants to be

After: Ethan shorn, but full of 'tude

Ethan was actually not as angry as he looks in this photo.  He liked his cut but was really ready to get the hell out of there, not in the mood to have his picture taken any more by his mom.

So I got "the face."  He's been practicing it, lately.  I was trying very hard not to laugh, because it's no fun being laughed at when you're trying to look mean and intimidating. 


I was hanging out with Jakey, my SUPERHERO:

Holy GF/CF breakfast waffle, Batman!

Talk to the Red Ranger Mask

Jake went BOWLING with FRIENDS:

Friends!

Jacob learned to use the 3 finger grip. Way to go, Jake!

Ethan's school's "BROADWAY NIGHT" fundraiser was a blast, with:

The Flying Karamazov Brothers (for real)

Um, yeah, when a Manhattan public school school has "Broadway Night" on a Monday, theater's dark night?  We get real Broadway stars.

Does that make up for an ancient building, tiny cafeteria, too small yard & gym, and overcrowding in general?   Hell, yes!  (Especially when you add in a wonderful, energetic principal; the world's best parent co-ordinator; terrific, smart & dedicated teachers and an incredibly generous, involved & motivated parent body.  And, oh yeah, the kids are pretty awesome, too)

And?  That's a WRAP! 

See?  Nearly wordless (for wordy me, that is).

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

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Stream of Consciousness Sunday: Not Working

Once again, it's Sunday, time for my weekly post inspired by the lovely Fadra's "Stream of Consciousness Sunday" writing link-up.

This week I'm off the painkillers, so expect more coherence.  Or not.

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It’s so easy to take things for granted in life, things that you never ever think about because they just work the way they’re supposed to. Until they don’t. take abdominal muscles, for instance.  I am having a mini anatomy lesson daily, as I try to go about my life, now some 10 days post-abdominal-surgery.  And every time my abdominal muscles engage? It hurts.  For the first few days it wasn’t just hurting they were literally not working – I couldn’t engage them at all, had to use other muscle groups to do their job.  Getting in and out of bed? An interesting challenge.

And because of this today I am having to do something that makes me sad, I have to leave Jacob behind when I take Ethan to his friend’s all day birthday party that’s a bit of a drive away.  Because managing Jacob is a physical job and I am just not up to the task, and this is one of Ethan’s very best friends and making him miss this party that he has attended annually for the past 3 years because I couldn’t watch his brother seemed just cruel.  One more reason for him to hate Jacob, and i didn’t want to give that cause any ammunition.

So jake & his Dad will be left home and E and I will ride with another family so i don’t have to sit up & drive but can instaed tilt the seat back and passenger lounge all the way up there.  Ethan will have fun, I will get a break, eat yummy food, gab with the moms, let Ethan run wild with the 8 year-old kid gang, nothing short of blood or blood-curdling screams necessitating my intervention.  but still, I’ll feel sad, knowing how Jake has always come along, has always enjoyed his time at our friend’s country home, that it is a highlight of his life too.  But not today. 

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Mourning in the Morning

This morning the sound of Ethan happily playing with his sleepover friend, Sage, would have brought me much happiness, except, except…. it made me cry. Made me cry because I almost never hear this in the morning in spite of Ethan having a twin brother. Because of Autism. 

Ethan is an 8 year old boy: they talk with their friends, play games that involve a lot of conversations, pretending and planning and even their battles are all words. “I am using water smite on you now”.  

And Jacob, he screeches like a monster and throws toys.  It’s not that he’s non-verbal, he talks a lot (actually all the time, but that’s another long post to come), but doesn’t have the ability to keep up with the rapid flow of thoughts and ideas exchanged in typical play.  He can carry on a conversation, IF it’s on his terms, his topic, and Ethan has just not signed up for that job.

Most mornings start like this… Jacob: “Ethan wake up, are you awake, Ethan? Eeeeeethan? Are you a robot? Ethan, are you a robot? Wake up, Ethan! Are you a robot?” Ethan: “SHUT UP JACOB!!!!!  Mom, Jacob is bothering me, make him stop, make him shut up, he is the stupidest most annoying meanest brother in the world!!!!!  Moooooom!”

And some days I am sanguine, take it in stride, separate them (as much as I can in a small apartment), get them (separately) busy, feed them (different breakfasts), get them ready for (their separate) schools or camp and summer school and their (separate) busy days.

And other days it’s hard.  The woulda-been, coulda-been, shoulda-beens bite me in the ass and I mourn the family we are NOT, the family time we just can’t have, the ease of two kids the same gender and age that I see taking place in the families of twins we know and hang out with.

This morning hearing Ethan so happy playing with his friend brings it all back, the dashed expectations: My sons will not be lonely they will have each other. Instead, today Ethan is happy and Jacob is lonely.  Most days they are both lonely, Ethan bothered, angry and Jacob hurt, rejected. And I can’t fix it, I just don’t know how, I feel like a failure as a mother. 

Maybe if I got up at 5 am to get everything ready so in the mornings I didn’t have to be busy, I could just facilitate and scaffold their interactions with each other. But what even then? Ethan would still want to play games whose sophistication is so beyond Jacob, and Jake would still be too loud, too physical, too repetitive for his nimble minded brother, so what then?  They could play successfully for 10 minutes, with me sculpting every moment, maybe, on the good days, and then, back to business as usual for the rest of the morning? And I got up at 5 freaking AM for that? Um, no thanks. 

I read a lot of true and fictional accounts of families with siblings both on & off the autism spectrum, trying to feel not so alone, trying to get into Ethan’s head, figure out how I can help make it easier. And you know what?  They all suck.  

Not because they are not wonderful, they are, especially this one: Rules by Cynthia Lord (who obviously has a kid on the spectrum herself). But because all those boys and girls (and for some reason it’s usually girls) while they may have difficult moments, when push comes to shove, they are unfailingly loyal to their Autistic brothers. Their parents describe them as their kid’s best therapist. And that is so far from happening in our house, I end up feeling worse rather than comforted, and no more clued in to what I can do to turn things around than before.

So, the sounds of happy morning playtime in my house are so rare. They do happen from time to time, when Ethan is feeling generous and happy and Jacob is being calm, his sweet funny self flying free, not frustrated by Ethan’s rejections.  

A few weeks back, on a lazy Sunday morning, they took all their stuffed Pokemon dolls -- I mean SOFT ACTION FIGURES (don’t want to trample boy egos here) -- and brought them up to Jacob’s top bunk, put them to bed and woke them up (Jacob’s oldest and most beloved pretend-play scenario) and had a whopping good Pokemon battle.  

I held my breath, tiptoeing, smiling, puttering quietly around the house so as not to break the magic yet.  Like an amateur juggler holding too many balls, I knew they were going to start dropping soon, but for just a moment they were all gloriously in the air, and all was right with the world.


NOTE: This was actually written 2 weeks ago on July 11th, so that’s the “today” of the post, not to confuse anyone who might have been at my boys birthday party today, actually, and be going “huh?”  I am just so overwhelmed these days, I wrote & then lost this until now, searching for something to throw up quickly to not be completely lame having gone a month without actually posting anything.

Groundhog Day

I have been gnawing at the big thoughts again, wondering how we decide what is of value.  I grew up in a family that emphatically valued experiences over things.  Money was tight.  We drove cars until they died, we re-covered an old sofa so many times I can date family photos by slipcover era: “oh, there’s the green and blue abstract amoebas, it must be 1968 to 72.”

But we went to the movies every week, museums constantly, theater and live music regularly, and took a modest vacation every year.  It is easy enough to say that was good.

Although the world we live in puts a premium on the material, no one would question that building memories is as important as building buildings.  Memories may be ephemeral but count as real, and potentially more lasting than things themselves.  The twin towers are gone, but who among us who have walked in their shadows cannot call them up at will?

But what happens when memory is gone? When the ability to lay down new memories erodes, and the mind sieves everything out every few hours so that all that remains is dust and ghosts, thin wisps of almost memory.  This is the state my mother finds herself in, and it is breaking my heart. 

Today, we were visiting with my friend Elizabeth in her lovely sun filled apartment.  My mother comes to her building weekly to see her therapist, who helps her hold the burden of her nearly unbearable sadness.  I shepherd my mother to all her appointments these days, she cannot negotiate the city on her own.  Too many moves in too few years with a memory deficient brain means she is constantly unmoored, needs steering. 

One time this summer, when Dad was still going out, their lovely and loving aide, Mina, had taken them both to his doctor’s appointment.  Mom didn’t want to go into the exam room with Dad that day, and chose to sit in the waiting room.  Bored and hungry there, she decided to go out to find a nearby blueberry muffin and cup of hot cocoa.  An hour later, Mina, canvassing every coffee shop, finally found her blocks away, wandering, wondering where it was she was getting back to.

Can't you just see it: the irritated calls from the doctor’s office about my increasingly agitated father left alone in the waiting room; Mina panicked, searching; me frantically hunting a sitter so I could come join the fracas, deciding if it was time to get the police involved yet. Oh that was a fun day, let me tell you.

But back to today: after my mother’s appointment, we have a tradition of having a light bite together.  Our regular haunt was the Hot & Crusty around the corner, common watering hole of old ladies and toddlers with nannies.   This suits my mother just fine, as she loves little kids and she is an old lady.  But lately we have been going to visit with my friend Elizabeth and take our tea in her apartment.

Elizabeth is fond of my parents and has known them the best of all my newer, Mommy friends.  Her own family is far, far away in Australia, and she is happy for grandmotherly company.  When I ring her to ask if we can come by this week, she says yes and adds with a laugh “And your mother can admire my apartment again and ask how many children I have and look at their pictures and tell me how lovely my family is again.”

I love Elizabeth because she takes lightly and in stride the fact that despite having met her dozens of times and spent hours in her company, my mother only vaguely remembers my friend, smiling politely at her on the street when they run into each other.

My mother’s ability to record new memories is now so deeply compromised.  Trying to give people a snapshot of what that’s like, I resort to movie metaphors: ”It’s ‘Groundhog Day’” I’ll say.  ”She lives a whole day and when she wakes up in the morning, it’s wiped clean, like it never happened.”   And no, not completely, not 100 percent, but close enough.

Two days home after my father’s disastrous hospitalization that nearly consumed him and us, after spending countless hours with him in the intense and unhappy cardiac ICU, I make a reference to it and she asks: “What operation?  Was Jim in the hospital?”

And I suppose, in some ways, that works for her.  She doesn’t have to remember our holding my father’s arms down as he screams “Stop them, they’re hurting me, make them stop!” to keep him from clawing at the doctors and nurses who are saving his life by applying hard pressure to the pumping, spurting blood vessels in his groin that he had ruptured by standing up and trying to walk away from his bed with a tube still inserted.  This is a precious memory I alone get to keep.

So my mother and I are at Elizabeth’s and although our visits usually coincide with nap-time, this time her two and a half year old daughter, Caroline, is awake.  My mother finds nothing more delightful in the world than an engaged and engaging toddler, and so she is in Grandma heaven.

Since all Caroline’s actual grandparents live many oceans away, she, too, is delighted to have the complete attention of someone who is happy to play peek-a-boo games with her for a length of time that would make most people droop.  My mother is completely in the moment, completely charmed by this adorable little girl, having the time of her life.  When she gets home she will even tell Mina about her how much fun she had today.

I feel very contented that I have provided Mom some most excellent distraction from the deep and abiding sadness that fills her life with my father now.  But I know that next week she will ask Elizabeth if she has any children again, and this takes bites out of my happiness.

This is yet my corollary to those old zen questions; besides that tree in the silent forest, and the one clapping hand: did it mean anything to give my mother this happy moment if it does not become a memory, if it dissipates into synaptic dust?

My father, now curled up inside his mind, will not know, will not remember what we have done, are doing for him.  But we will know.  Ethan, at 5, observing me getting ready to go out on another parent related mission commented: “And when you and Daddy get old I’ll take care of you like you take care of Grandma and Grandpa.”  Yup, kid, you get it.  And like the old saying goes, may we live long enough to become a burden to you.

My sister in law, Bern, went through all this a while ago, twice in rapid succession with both her parents.  She recently wrote me a lovely note and shared this:

“One day, during the time my mother was sick, I was helping her put on her shoes, kneeling at her feet. She looked down at me and said, ‘One day you'll be glad you were here to help me.’ I said, ‘I'm glad now to be able to help you!’ But I understand now what she meant. Because while you're going through it, you're feeling more pain than satisfaction. But one day, I did indeed come to feel how much that caring meant to my mother and thus to me.“

So I guess that has to be the answer for me, that even though my mother will not remember it, I will remember that I gave her this bright, happy moment.  And that will have to be enough.