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Posts Tagged ‘ScareMeNots’

“If you can’t make it better, you can laugh at it.”
~ Erma Bombeck

There remains inside me, despite every effort to squash its useless purpose, an ugly envy when I see beautiful photos of families – husband, wife, child/children, smiling, caught in a snapshot of happiness.  The knowledge that these parents may tuck their little ones in at night, or cheer them on at sports games, or watch them proudly in the spelling bee.  The realization that they have the opportunity to guide and teach and comfort their kids, to gather together in their own family unit, tucked into time itself with undying memories.

Of course this is foolish, imagining idyllic problem-free lives.  It is never so.  Behind every smile is pain, and in every life falls the rain of sorrow.  Yet I have but one child, too far away from me, and I am unable to guide him anywhere against the wilfulness of autism itself which cages him in its unrelenting grasp.  Jonah’s father is gone from me – and as necessary as it was, it is too often cause for feelings of inadequacy, of failure, of loss.

The mornings are hardest.  Awakenings.  In sleep we are all embraced by the quiet wellspring of a dark, unknown possibility and promise. Saturdays are question marks, when every week my mother and I punctuate the ride to Boo with silent queries and fervent prayers.

When we first picked him up at his residence, he was happy and excited.  The caregivers told us he ate two breakfasts and was behaving well.  He was calm on the ride to Andy’s apartment.

Jonah and his "octopus."

Jonah and his “octopus.”

Just a few days ago I phone-conferenced in to his IEP (individualized educational plan) meeting.  I heard encouraging news about his progression in verbal communication – he is learning to say “I like” and “I see” (etc.) to begin sentences, instead of just “I want.”  He is not yet generalizing this beyond the classroom, but I am confident he will.  They tell me he is most anxious (and therefore likely to aggress) when he is in large crowds or feels encroached upon by someone sitting too close – which is most likely why he only tolerates anyone in backseat for the short duration of the ride to Andy’s apartment.  Often he will ask for daddy in backseat, but I can’t drive Andy’s stick shift and neither can my mom.  I suppose I should learn.  How hard can it be?

They told me he has a rash on his penis which they are treating, and they are beginning to recognize it as a recurring cyclic seasonal thing.  He will have been there for two years in August.

The mind reels.

This last Saturday brought change, as Saturdays often do. He ate lunch on his garbage can perch, and had his bath.

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Whereas usually Jonah will ask for mama to ride with daddy to transfer station, instead he held his palm up to me when it was time to go.  No mama, he declared.  Mama stay here.

I smiled weakly and stayed behind, briefly playing with Andy’s landlord’s kids, Manny and Isabella.  They are cute kids, and Andy’s landlord looks like George Clooney:

I call him George

I call him George

Sweet Isabella with Protector Patty, a ScareMeNot.

Sweet Isabella with Protector Patty, a ScareMeNot.

I pulled Andy’s copy of Clan of the Cave Bear off his bookshelf and read a few pages about Brun and Broud, Creb and Ayla, until they all returned.  Jonah came flying in the door, and my mother and Andy said he did not want to come back to the apartment at all.  He wanted park.

We were all glad, since usually he only wants car ride. But once again he wanted no mama.  My mother felt so bad for me.  “Mama is coming too,” she told him.  “No…no,” he answered.  My mother decided to be the one to stay behind anyway, and I brought along some root beer for Jonah to sip in the backseat of the car, as incentive for him to let me come along.  He was not appeased.

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“I hold it,” he declared as soon as he was strapped to his safety harness.  Andy opened the can and poured most of it into a cup, which he gave to me, then he handed Jonah the small can with just a bit of soda inside.

Laughing, Jonah chucked it at us, splattering the dash and control panel of the car’s radio.

sticky mess

sticky mess

I cleaned up while Andy removed Jonah from the car and took off his harness, telling him “You blew it.  No park.  Quiet time.”

looks like an arrest

looks like an arrest

After this we went back inside, where Andy and I got Jonah to lie down on blue bed and each of us lay on either side of him.  He was quiet for a few minutes and then turned to me and held out his little hand.  I kissed his palm.  He lifted his leg out from under the covers and I held his little foot and kissed a toe.  More kiss?  he wanted.  Of course more kiss.  I kissed each toe, his ankle, his fingers…the softest place on his neck.

“I love you,” I  whispered.  “I love you.”

And then it was time for my mother and me to drive home.

Yesterday Andy asked me to play an online Texas Hold’em poker tournament he had won an entry into but could not play (actually he’d had to place high in several tournaments to get into this one).  There were 750 people in the tournament and nine prizes, the top prize being either $2,000 or an entry into the World Series of Poker in Las Vegas (which usually carries a 10k entry fee).  After two hours of playing I came in 6th place and won a whopping $40.  I do like to play and am fairly good at it.  It was a fun distraction to my weekend.

The world events of this past week are a shadow-cloud over my microcosmic thoughts.  Too much too much.  My therapist tells me not to listen, but it is impossible not to hear.  While I was sitting on the steps outside his office the day before, reading and waiting for my appointment, a blonde woman with a gold cross necklace asked if I minded if she set her coffee cup down.  I told her it was not my building and even if it was, of course she could.  We chatted a bit as she pulled out a cigarette and lit it, telling me things about herself – she was from NYC.  She didn’t like Albany.  She had been mugged twice.  A man from the Troy Record newspaper approached us to do a “man on the street” interview about the Boston marathon explosions.  I politely declined, but the woman was all excited to talk and have her picture taken for the paper.

“It’s those damn Moos-lums,” she declared.  “We have to ship them all back to their own country.  (And what country would that be? I thought to myself).  “It’s going to keep happening,” she added with certainly, pointing her cigarette at the dark-coffee-skinned interviewer.  He grew visibly uncomfortable and told her he could not use her comment about the Muslims.  She was unhappy about this, accusing him of being part of the liberal media agenda.  When she walked away, he and I talked for a bit.  I could tell he wanted to interview me instead, and again I declined, saying “I think it’s sad that the only time we seem able to be able to come together in solidarity is when there is terrorism or disaster.”  He nodded in understanding, and I stood up and went inside.

Boston.  Texas.  Seattle.  Denver.  China.  India. Japan…North Korea…etc. etc. etc.  The suffering is everywhere now, every day.  If nothing else, it helps remove the envy I spoke about at the beginning of this post, replacing it with gratitude and sympathy.  God help us all.

“One way or another, this darkness got to give.”  ~The Grateful Dead

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I’ve been kind of sick for too long a while.  I’d rather be sicker and have it over more quickly.  There is simultaneously optimism and fear inside me – and a disheartened kind of grief.  A good, gracious man I know died on New Year’s Eve; he was only 61.  I’m not sure what’s going on inside my head but I need to watch videos like this and seek out information like you get here in order to continue to have faith in humanity

I have to remind myself there are so many amazing things. 

I forgot to bring my camera on my trip to see Jonah yesterday, so I’ll have to share older pics.  Jonah was a good boy.  He didn’t want me to sing, though, even though he was in a parroting mood.  Andy had on the radio and Jonah was humming snippets of the top 40 music and saying things to himself… then suddenly he’s quiet, moving his thumb easily and naturally into his mouth as he turns to look out the window.  It was a warm day – maybe even 40.  My mother and I were quiet on the ride home as she tolerated my music:  things like Kula Shaker, Paul Simon, Radiohead, and Death Cab for Cutie, this day.  I won’t subject her to Greenday or the Grateful Dead; I know where to draw the line.   It was a good visit tinged with the usual feeling that comes inside when you are driving farther and farther away from your innocent ten year old son. 

Today I made chicken cacciatore and M and I are watching Dick Proenneke’s Alone in the Wilderness.   It’s such an amazing documentary that tears come to my eyes as I watch it.  This man built a cabin in the middle of Twin Lakes, Alaska (where he was the only human) and lived there for thirty years, 1968-1998, until he was 81 years old.  He carved spoons and bowls out of wood in a matter of hours.  He could chop down 40 trees and shape them into useable logs to build the cabin, all before noon.  Amazing things.  He built carriers for food and moss.  Caught fish and avoided bear.  Somehow didn’t go insane even while so literally alone.

The things he accomplishes – the way he thinks, the way he moves through the world — it’s so mind-blowing sometimes I have no reaction but to laugh out loud in astonishment.

He builds tools, tables, chairs;  intricate, near-perfect hinges; neat, even boards for shelves and working surfaces.  He narrates most of the movie, sets the camera on a tripod and films himself measuring, building, climbing, chopping, carving, cooking, gardening.  Everything handmade.  A plane would come only, I think, twice a year to bring him very basic supplies.  Are there still people like him, people who know civilization but choose to leave it, with talent and skill and that true harmony with nature?  I am in such awe of it.  No wonder I love Laura Ingalls Wilder.

For me these people speak of possibility, and resilience, and determination.  

It’s good for me today.  So here are some random things while I make my exit to watch some more about Mr. Proenneke:

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Silly Me

Silly Me

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ScareMeNots recycle!

The Hudson River in March 2002Rhinebeck NY

Baby Jonah...Looking right at me.

Baby Jonah…
Looking right at me.

Gustav Klimt'sThe Kiss

Gustav Klimt’s
The Kiss

O

my child of the water

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This past Saturday was okay for a while and then it really wasn’t okay at all.  Part of it was my mental state, which went all to hell on Friday.  But here are a bunch of cool pictures.

Knockout Ned came along.

Jonah put his harness on to get into the car…

Swinging at the park

Looking at “whiteduck.”

…but then in the car he pulled my hair hard, grabbed and bent my glasses, and kicked me in the head.  My mother kept saying “let me get in the back with him.”

I’m not sure if she thought (A) He wouldn’t attack her or (B) She wouldn’t mind it if he did and (C) She certainly wouldn’t be the melodramatic weakling her daughter turns into, crying and sad because she sees her son for 2 hours a week and wants it to be a good 2 hours, a happy 2 hours…

She actually was extremely angry at me for this and not a word was spoken between us on the ride back.

“All I can say,” she declared disgustedly, once we’d arrived home, “is God help Jonah.”

I was pissed at her implication, but I can get behind what she said.  I have never done right by her beloved grandson and I never will.  This I must accept as her perception, one she has a right to, one I mustn’t do much more with than acknowledge.  Thank God I am not so young anymore.  I am learning.  Slowly…but I am learning when silence, forgiveness, and self-examination are best.

Off to another doctor appointment tomorrow, to the rheumatologist again.  Andy’s bringing him up this time.

God help Jonah.

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Jonah and Fearless Fred.

This picture was taken a month or so ago, during the only snow we’ve really had.  A few inches, once or twice.  And remarkably warm.  Spring birds are singing.

I have not been here because I’ve been here, and here, and though I do love to write these things, sometimes I wish someone would pay me to write blog posts instead.  I have ideas for things I’d like to attempt.  A novel.  A memoir in blog format; basically, this blog (so as not to require any work on my part except to edit/proofread and ask an agent to read it).  But I’ll take what I can get.

Jonah was so good on Saturday.  Andy was kind enough to drive him up to grandma’s house, where I met them and we commenced to have circle pepperoni and bath and car ride (complete with perfectly-timed and very long train).  Jonah was hyper but happy.  I gave him a bath by myself (usually Andy does this), and we made a fine mess in the bathroom, splashing and laughing and getting bubbles everywhere.  He went to the bathroom like a big boy (it’s hard for me to believe I’m writing that about a boy who is going to be 10 on March 7th).  He ran, soapy and dripping, past my towel and into the front guest bedroom, where he jumped up and down on the bed and I jumped up and down on the floor, timing my jumps to his, and the both of us laughing and yelling Jump! Jump!  Errry-body jump!

I love Boo so much.

We have Fun Fridays once a month at work now, and they are fun.

I have joy in my life and I feel happiness again, though tomorrow would have been Sanx’s birthday (her 38th? I’m not positive).  And Gina’s been in the Times Union‘s big investigative report about NXIVM, and that’s all kind of crappy.

I also thought of the coolest band name ever:

His Boy Elroy

I shouldn’t have told you.  Now you can steal my coolest band name ever.
Take it!  Somebody steal it!  I should google it and see if it’s already been done.  Probably. Let’s see…

Yes!  Shit.

I think this picture was taken last weekend.  I’ll never tire of taking Jonah’s pictures and then looking at them later.  I’ve been sending more postcards and letters and little packages to him. 

I miss my boy and this is my way to be closer to him.

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Not a shred of evidence exists in favor of the idea that life is serious. ~ Brendan Gill

Mom and I drove down to see Jonah today, stopping first, as usual, at Andy’s to drop off lunch and get settled before picking up Boo at his house.  She insisted on driving, though she makes me nervous as hell.  We didn’t get off to a great start because she was asking me what I wrote about for my column in the January issue of the Capital District Parent Pages, and I asked her why she didn’t know, and she said she didn’t have it.  She didn’t have any of the issues, in fact.

There is a diner a mile from her house at best; they have the issues for free in the vestibule before you even walk into the restaurant.  Perfect place to pick up a copy, which I’ve told her before.  I pointed this out to her again.

“Well I don’t really go to the diner very much,” she said.  I bite my lip, look out the window.  I know I shouldn’t say it but I do anyway:  “I’m getting mad,” I said, “and hurt.  You can’t go pick up a copy of the monthly magazine your daughter writes a column for?”  Then I sighed.  “I’m sorry,” I said, staring at her fragile, thin legs and watching her fish for a cigarette.  “Just forget it.”

I seek affirmation and seek affirmation and seek affirmation.  From my mom, my father, my boyfriend, my friends, my boss –even my child.  Clearly I need to stop thinking of myself as the center of every scenario.  Perhaps not coincidentally, I just finished reading a fantastic book Tim Smith of Smile-Therapy sent me:  Go Givers Sell More.   The book’s co-authors talk about how the sales process isn’t about you. They suggest getting on the phone and listening to people’s stories, to find out what makes them tick, where they come from, what they dream of doing someday.  It’s got the flavor of Carnegie, only rings far less scripted, more sincere.  Be a giver.  Listen.

To listen well is as powerful a means of influence as to talk well, and is as essential to all true conversation.  ~ Chinese Proverb

Speaking of listening, my mother then decided to play a Christy Lane CD.  My apologies to her fans, but what an overproduced shmaltzy mess of songs.  She can sing, but it’s what she sings that grates.  Footprints in the Sand.  Really?  They make it into a song and present it as if it were wisdom we’d all not heard ten thousand times before?   Sigh.   Too loud, too loud, I kept thinking, until finally asking if we could turn it down just a little.  She lit another cigarette and nodded her assent.

I listened.

Jonah was about how we’ve come to expect.  Hyped-up, begging for tuna and bath, black soda and car ride, daddy in backseat.  I brought Protector Patty with us and Jonah played with her a little.

dad offers a grape

Good thing Patty has multiple eyes

Good thing Patty has multiple eyes!

She even came with us on a walk in the woods.

Like ScareMeNots before her, she insisted on hanging around in the trees…

Patty, loving life.  I swear these ScareMeNots actually show emotion.

I’m tired and I’m inundated with work, writing and re-writing.  I asked for it but it’s difficult and I’d rather write here or more for the Capital District Parent Pages…but neither of those pay me a dime.  For the test writing I get moneycoin.

It is also a nice distraction from the anxiety that seems to invade, uninvited and inevitable, when I have less to do.

Mama loves you, little Boo.

Everything is okay in the end.  If it’s not okay, then it’s not the end. ~ Unknown

I just heard now that Whitney Houston died, of unknown causes, at the age of 48.  How sad.  What a waste.  I guess if everything’s okay in the end, everything’s okay for her.  How weird that I had just typed that quote…

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I just returned from some standardized-test writing training in San Antonio, TX.  I brought a small Guardian Gus to give away, but first we had a photo shoot (and yes, people were staring at the full-grown woman taking pictures of her stuffed animal friend)…

Hanging out in the palm trees & basking in the 70 degree sunshine

Checking out the jacuzzi

Gus, defying gravity!

Gus, Willy Wonka style, in the great glass elevator

Hanging at the cabana

I ended up kissing Guardian Gus goodbye and handing him to a sweet lady from Arizona who has 5 kids.  Gus is so excited to be a part of a big family…

Guardian Gus promises sweet dreams!

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