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Archive for December, 2012

“You are always saying something
You swear you’d never say again…”

~ Fa Fa by Guster

Awareness is everything.  I too often play the ostrich, burying my head in the sand.  Not a good plan if you intend to see, or move, or live.  I have turned a corner, maybe, pushed gently but firmly into the light by my amazing friend R.  In part, he wrote to me:

You know damned well it’s the Key to the Garden 
To say, “yes”
To be silent to it, 
And by ‘it’ I mean everything. 
To witness preconceived…
To be the recipient of true mercy,
 
To repent to the beautiful,
 
To witness your own suffering from God’s embrace, 
Rather than punishing that very suffering, 
Locking it in the closet like some kind of monster.
And:
So too do we tend the garden of ourselves, 
We become the fountain
from which beauty becomes.
Open your mouth and pour forth.
The graying thorns push forth new roses.
So seemingly impossible it seems 
To disentangle from their clutch,
Without losing of the flesh, 
When it is merely a step backward,
A patient disentangling,
 
But Jesus H Christ it hurts.
And:
I could write inspiring and encouraging words, a pep talk Chicken Soup For The Soul, 
but I already fell into that trap.
 
I don’t have a fucking clue what it feels like to be you. 
 
Not a clue.
 
What the fuck do you know, R? 
You don’t know shit. 
That is so, that IS so.
 
I DO know that walking towards life is at once the brave path, 
And yet the only one that brings relief.
 
I do know that fucking much.
That much I do know. 

And so I answered “yes,” and something inside me woke up, and I am walking toward life, toward embracing life – all of it, even the suffering and pain – the helplessness and disorder.  At Four Winds they call it “radical acceptance.”
Because one of the things I never say here is how close I have been at any given moment to turning away from life completely.  How my bones feel like bars of a cage… how often I want to crawl out of my skin… how I feel utterly uncomfortable inside my body.  How close I come to running away in a literal sense – to driving until the gas is on empty and then curling up in a ball in a forest somewhere.

Yes, I know how ridiculous I sound.

I can change all of these things.  What you focus on expands.
It shall be an amazing, healthy, happy 2013.

And as if to drive this all home, Jonah was wonderful yesterday.  My mom and I risked the snow we knew was coming and drove down to Rhinebeck, luckily before any weather had started at all.
Jonah wanted grandma in the backseat and he proceeded to steal her gloves and wear them quite happily (which is funny because he won’t wear his own. Maybe we’ll get him a similar pair as these, which he loved and laughed about having “stolen” from grandma):
The satisfaction of a heist well executied:  pulling them on...

The satisfaction of a heist well executed: pulling them on..

Looking over to see her reaction...

Then glancing over to see grandma’s reaction…

I love how he looks like a little guru here, or as if in prayer...

I love how he looks like a little guru here, or as if in prayer…

Jonah sang and laughed and ate tune-fish-sandwich and chips and cranbewwy soda.  He took his bath and we went for car ride to transfer station (where you recycle).

My mother and I breathed a collective sigh of relief when we started home in the snow…we thanked God, almost in tears, for another good day, for a happy boy.

And later, having arrived safely home, I took a few pictures of the beautiful snow falling on my house and lawn.  I put Knockout Ned out there for the ScareMeNot Facebook page, so you’ll see him hanging from our lamp post:

???????????????????????????????

“And what you wished for could come true;
You aren’t surprised, love, are you?”

~What you Wish For, Guster 

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It’s interesting when some people worry about/disapprove of/mock my disclosing so much of my life here. 

In fact it’s almost funny.  The truth is I only” type & tell” about thirty-fifty percent of what is relevant in any given post, and that’s not a time crunch problem – it’s a matter of what to say and how to say it.   Or if I even have it in me to do so. 

And so tonight I’ll post two quotes and a bunch of pictures and leave it at that, before I start saying a whole bunch of crazy shit.  I promised not to sugar-coat, but I never promised to reveal all.

I cry out for order and find it only in art.
~ Helen Hayes

Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content.
~ Helen Keller

God knows how Helen Keller had that superpower.  I sure don’t, though I love the quote.

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O

O

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whales

comic relief:

jonah and the whales

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“oh ho, alas alas” ~ john berryman

my first ever no-capitalization post, i think.  i am playing e.e. cummings for a few paragraphs and oscar is dead.  i write only because i need to release a few things tied up inside me…

andy picked jonah up at anserson this morning and the other children in his house had been picked up the night before (we have yet to even attempt an overnight visit), and the ride up was okay.   quickly things went south, though, once they got to albany, and jonah spent the majority of his time weeping uncontrollably, despite presents from santa and bath and turkey sandwich.  he wanted a car ride to the train (which never came) and at some point during the ride, inexplicably, his face froze and melted into sadness, anguish, pain.  he wept and wept, then threw his coat, shoes, and socks at andy – most of which i was able to deflect.

O

Eventually there was nothing to throw.  So Jonah kicked the back of the seat, hit hard at his window.

Andy pulled over so he could hug Boo, but Boo pleaded mama? so I got out of the car and I opened Jonah’s door and leaned in and hugged him tight.  Then tighter, giving him sensory pressure, loving him loving him loving him, until finally he un-tensed, collapsed into me, and wept harder – crying and sobbing.  We cried together, the back door open on the side of the road.  Then we’d calm him down and we’d get 500 more feet down the road and it would happen again.  No go back to Anderson?  Hot dog?  Bath?  Pa comin’? — confusedly, desperately.

Andy drove, and I cried, and Jonah alternately calmed down (and even giggled once) before again becoming angry and then falling backward into something like despair.

Inside my mother’s house, after the car ride, he punched me hard in the face and and kicked me in the ribs.  He head-butted Andy, trying to bite, enraged and frustrated.  We had to just lie with him on the carpet for a good long while

and whatever it is I’d pay a million dollars to fix it.  He breaks my mother into a thousand pieces, every time.

There is too much to say and who the hell wants to read about this anyway on Christmas Day?

I will post something better, later. Funnier.  I’ll be David Sedaris.  Just not on this particular December 25th.  Lo siento.  And I cannot forget Connecticut; I pick at its horrific entirely like a scab, imagining the families, those familes and their unthinkable Christmas pain.

We sometimes mourn for what we do not or cannot have any longer, or at all — for things and concepts; dreams, wishes, and people – we mourn for what is irrevocably gone.  But also we mourn for what will go on and on and on and on, painfully and unceasingly beyond our capacity to fix.

O

I’m so sorry, Boo.  Mama loves you.

God please help him.

Help all in despair this day.

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averting the apocalypse

Marvin the Martian, plans to destroy the earth usurped (from the old Bugs Bunny cartoons)

Marvin the Martian, plans to destroy the earth usurped     (from the old Bugs Bunny cartoons)

 

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Resentment: Def. A feeling of indignant displeasure or persistent ill will at something regarded as a wrong, insult, or injury – real or imagined.

Andy has brought Jonah to three post-op doctor appointments this week.  God knows what would happen if he did not live where he does and have the job(s) he does.  E and J have been unable to bring him to his last 4 appointments.  What does the school do if there is a child who needs an eye surgery and doesn’t have the transportation to get there?

The laser surgery was medically successful, at least initially, but I had to take the whole day off Monday because everything happened excruciatingly slowly.

This video shows Jonah, gowned up and ready to go, stuck in a room Does he like Dora? the nurse kindly asked and we said yes and we said sure and we said thank you when all we wanted was to get going. Andy is standing between Jonah and me as Jonah walked his circles in the small space of the room.

Five minutes after this Jonah had a major flip out, throwing himself on the floor in the hallway, kicking, screaming, pulling hair, biting.  Nobody came out to help us.

Eventually we got him back to the room and calm.

O

The operation itself was quick.  Jonah got sick afterwards and kept wanting to itch his eye.  so I used a tissue to gently press on the eye, and I kissed it soundly, over and over.  Kiss eye?  Kiss eye?  Yes, Boo.  Kiss eye.  Of course kiss eye.

O

It was more difficult than usual to send him back to school, an hour and a half away from me, where I see him so infrequently and have so little control over what happens to him.  I have to trust.  One of the check-in people on eye operation day noted that Jonah was at a residential facility.  She mentioned that her daughter was autistic and how she would never, ever trust anyone to take her precious baby away from her.  “I don’t trust nobody with my baby,” she declared.   It was as if she had slapped me in the face.  Who says that to someone whose kid is already in a residential facility?  What do you know about why we did it?  I wanted to yell.

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Jonah & Andy, walking the halls before the room where you gown up.

– – –

And so I crawl along, filled with dread, with grief and terror for this world, with my heart broken for those at Sandy Hook in CT.  I read all the intelligent arguments about mental illness, parenting, gun control, and violent games/TV, and I find no answer in my heart — and that, maybe, is what frightens me most.  My mental state becomes fragile when I am confronted by humanity at its worst.

Which did not help when very recently I was the target of verbal anger, delivered in front of others and with a ramped-up rage that left me in disbelief, filled with embarrassment, and completely stunned. Despite a nonverbal apology later for the “confusion,” (not the behavior), I think maybe too many people enjoy railroading over people like me, who don’t fight back.  One witness, upon seeing my face fall, told me coldly to “suck it up.”  Maybe I really don’t belong in society, such as it is, because that kind of behavior seems so foreign to me that I have no response but tears.  It will pass, it always does, I regain the strength and something restores my faith and I keep on going.

Yet there is a lot that’s wrong with all the people in this world.  With our priorities and with our ignorance and with our anger.  All of us.  There are a lot of things one can say about me but I will say this for myself:  I may be meek, but I am kind, and I don’t take advantage of people’s weaknesses or vulnerabilities, and I care about how other people feel, and I have never treated anyone the way I was treated today.  So perhaps people like me really shall inherit the earth, like the Bible says.  Watch out then, bullies, because things are gonna get a whole lot more mellow. (Quite rightly).

If I were a Buddhist all of this would play out in my head and heart quite differently.  I would be thankful to this person for their challenge to my ability to be compassionate and understanding.  I would consider them my teacher.  I would not only forgive instantly but also revere the perpetrator – very similar to Jesus’ “turn the other cheek.” That’s some serious shit to truly take on, though, which makes me admire earnestly practicing Buddhists and Christians all the more.  Perhaps I should just up and go to Plum Village for a while.  I need to pound the lessons into my head.

Of course this whole story – every little bit of it – is nothing compared to what has happened and continues to happen in Newtown, CT.  Burials, burials.  An entire community with post-traumatic stress disorder.  Pain-filled awakenings from nightmare hours of darkness.  God only knows the horror.  God help all the mourning people. I just can’t muster much joy in Christmas this year;  I have had the wind knocked out of me and am only a stranger, miles away.  But I can pretend, and the pretending will become real.  Smiling begets smiling.  Breathing allows for release.

Hope.

At least I am still able to crawl along.  To let go of the resentment.  Breathe, breathe.  Let it go… Feel gratitude.

I’m a Weeble, you see.  I wobble, but I don’t fall down.

Weebles just, well, rock on.

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the stolen child

For he comes, the human child
To the waters and the wild
With a faery, hand in hand

For the world’s more full of weeping than he can understand.

The Stolen Child by W.B. Yeats

O

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“Rich man can ride and the hobo he can drown
But I thank the Lord for the people I have found;
I thank the Lord for the people I have found

While Mona Lisas and Mad Hatters
Sons of bankers, sons of lawyers
Turn around and say good morning to the night
For unless they see the sky…
But they can’t and that is why
They know not if it’s dark outside or light.”

~ Mona Lisas and Mad Hatters, Elton John

I have not felt like writing.
I’ve been playing online poker and sending out (mostly Christmas) cards,
playing with stickers & markers like a kid
listening to (new to me) old music from the early 70s
(Genesis and Elton John, their really old stuff…)
I’ve been staying up way later than I used to
and trying to unravel the sticky red tape of Medicaid
and trusting it shall be unraveled, soon & successfully.
I’ve been dreaming of the Pacific sun over the Big Island
and not thinking about Jonah’s (4th) eye operation on Monday.

Perhaps some pictures. I’m just so very tired.

O

He looks like a pissed off mini-Beatle in this photo.  And, more and more I think, in pictures you can tell his left eye looks so different from his right eye.  Evidently he has just had a haircut, and S, one of his direct care workers, says he is muy bonito.  (She speaks Spanish and if I had kept up with my Rosetta Stone, so would I).  I can’t wait to see him on Saturday.  I couldn’t go last week because I had the kind of migraine where you puke 8 or 10 times and lay there in the bed in between, twisting and pushing your face into the pillow to seek comfort, cushion, relief.  Anything, anything.  I was so desperate.  I’d never hold up under torture.

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Jonah is high-fiving E, one of the kick-ass caregivers; she keeps track of all his records and she advocates, smiles, hugs, and is generally awesome.  Plus she and J drive him to and from many doctor appointments.    Here they are at Jonah’s recent glaucoma doc.

I took this (nothing really happens) video sitting next to Jonah in the backseat of car ride.  You can see how all around his lips are chapped (we took care of that in a few days with some Burt’s Bees) and he is rhythmically rocking to some Top-40 song Andy has on the radio she said disdainfully.  I like when he gets all smiley and turns toward the window.  By the end he reminds me of Carl from Slingblade.

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Manzo likes to be inside boxes and bags.  The bag is appropriately from the World Wildlife Foundation. <– Just as I typed that M opened the door to let Jack out and Manzo scooted out as well, jumping the fence into our next door neighbor’s yard immediately.  I am trying not to panic because I know we can’t catch him if he doesn’t want to be caught, and it’s cold out so he should come back in.

Damn it though.

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almanzo comes home!

Hooray!  Thank God and all my lucky stars and saints, my kitty ‘Manzo’s been found!

I’m at the dentist this morning and my cell phone rings.  Luckily P, the hygienist, hadn’t started cleaning and polishing my teeth yet, so I answered it and a man told me he found my cat (inside a house for sale two doors away.  I didn’t even know my neighbors had moved out yet).  They must’ve moved out Monday, and somehow Manzo snuck in and got locked inside the house. When the guy found Manzo, the cat was huddled under a carpet on the back porch.  Turns out that guy might buy the house, and I gave him the reward money even though he didn’t want it.  I hope he does move in – I want a good neighbor.

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I can’t stop petting and kissing and loving my cat.  YAY!  Jack was happy to see his cat brother, too.

Jonah is going to see his primary care doctor tomorrow, who can give him a good look-over and maybe suggest something other than Humira, so when we next bring Jonah to the pediatric rheumatologist, we can maybe try that.  And I am pretty sure I can get my 2k back from Medicaid.

And even though I had kind of a crappy week at work, next week should be great. (My weeks kind of start Wednesday at 3:01pm and end at 2:59pm the following Wednesday).  If that doesn’t make sense, not to worry.  It’s not an important part of the story.  What matters most is I feel a whole lot better today, and re-energized.  Thank you all for prayers and positive thoughts and wishes.  You are the change this world needs.

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Manzo says purrrrrrrrrrrrrrrr

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fail

I guess I’m one of those people
who have a difficult time this time of year,
when everything is dark
and the days fly quickly
from one night sky to the next
in a foggy blur of countdown-to-Christmas,
the December rush and push and prepare
and pressure at work to do very well
at a very hard time of year to do well at all.
None of it feels okay to me right now.
I’m panicky, quivering.

I feel beaten down.

It’s almost too difficult to get into the whole Jonah mess but then, after all, this is a blog about him.  Last Thursday the school called to tell us he fell off a chair and had a few scratches on his back — but when we picked him up on Saturday he had a huge bruise on his buttock and a smaller one on his l0wer back.  I guess the nursing department felt they didn’t need to inform us because it was all part of the same incident they’d already told us about, but nobody at his house told us anything either, so we were shocked when he wanted bath and we saw him all black-and-blue.  I would post a picture but for fear of some sick pedophile looking at it for kicks.  As it turned out, the house caregivers thought the nursing department had told us.  They were sincerely concerned and, in fact, the nurse had just checked on Jonah Saturday morning before we got there.

Earlier in the week we’d learned Jonah has been without his Humira because of a delivery problem, and that they’d called his doctor who said it was okay if he missed a dose.  Turns out the “delivery problem” was that Caremark, the pharmacy folks who deliver his meds, would not release the medication until a $2,077 copay was remitted.  After taking a half a day off on Thursday to make calls and figure this out, I managed to get the name of his new Dutchess County Medicaid worker, but had to call about 7 times before I got her.  Usually the phone is busy, and sometimes it rings and rings until a recording says, simply and harshly, “you cannot leave messages in this mailbox.”  Then I had to fax shit over to her.

Then I had to call my primary health insurance company and his school, sift through all the red tape and bullshit, and still have no answer as to why, with primary and secondary insurance, I owe a co-pay of $2,077 for every dose of Humira my disabled son receives.  So, faced with no immediately forthcoming solution, I used my credit card, called Caremark and paid them to get my son his medication the very next day.  Merry Christmas!  And all that money is just a copay, and only for whatever they consider one refill.  Supposedly there are grants you can apply for, and maybe I can see if Medicaid will reimburse me, but at this rate I can afford about one more refill before no more Humira.  I’m working on figuring it out.  Maybe he doesn’t really need it so much; there has to be some other generic medication. I should call my pharmacist cousin.

(Wait’ll I tell you about the non-refundable vacation I booked in November.  Another post).

And to top it all off, my sweet kitty Almanzo is gone.  We haven’t seen him since Monday morning.  I put posters up around our neighborhood (Beacon Avenue near Berkshire Drive, Russell Road, State Office Campus) offering a $100 reward.  Then I put an ad in the Times Union in print and online, and on the Mohawk Hudson Humane Society website.  Damn it, I miss him.   He was just getting so he’d sleep with Jack and lie in my lap so I could pet him.

O

We adopted him from the Mohawk Hudson Humane Society in (I think) July of 2011.  He was 4 then and they didn’t know what his life had been like.  I wanted to keep him an indoor cat but it was crystal clear he was an outdoor cat;  he has always longed (incessantly and loudly) to go outside.  I’d rather have a happy cat than a miserable one, even if it means he is gone from me.  He was a hunter — had such fun chasing and catching critters, mice and such (though I always hated when he got a bird).

I’m rambling, my fingers shaking over the keyboard.   I need a little blog break, maybe for a while.

Manzo, please come home.

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