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Archive for the ‘Anderson School’ Category

I felt anger yesterday.  And resentment.  Envy.  Ugly thoughts.  I don’t belong on facebook because of my hyper-sensitivity, but I’m on it to be the Scare-Me-Not mommy.  Facebook, childishly, really hurts.  I look around the site and see things that make me jealous, or left out, or angry.

Sisters on a beach vacation – beautiful, strong sisters I wish with all my heart were my own.  Family at Yankee Stadium – something I’d love to be invited to (and have vocalized this wish to my mother many times when she was one of the crew) but have been left out of over and over again until I gave up.  Young couples with their arms around each other, grinning ear to ear.  Friends who get 3 vacations in one summer.  The beach, the beach, the beach.  Their children playing together, jumping in the waves.  More sisters, four or five, all grinning, all looking like one another, all there for one another, no matter what.

(Oh, to bring Jonah back to the beach.  To hear him gleefully cry “the ocean!” again.  Now, it’s impossible.  Next year I will plan ahead and see if I can hire someone like Joe to go with me to help me with him – and we’ll take him to Cape Cod. )

The young family living in Hawaii.  The really nice rich cousin whose family goes to Rome, or Milan, or wherever else the 1% go for vacation.  The family who has little material possessions yet is drowning in love.

Then, the people fighting diseases, fighting for causes, fighting for their children…trapped in the midst of horrible things – all of them rooted deep in faith, all of them brave and uncomplaining.

And then there is me.

I don’t have the diplomacy to keep my mouth shut and I don’t have the grace to be uncomplaining and I don’t have the faith to hold me up.

For all those who so kindly commented on my last post, you see I am mostly just a little girl, emotionally – frightened and bratty as hell.  The spoiled only child who grew into the downwardly mobile idealistic hippie chick college student, who grew into a married woman who had a baby largely because she knew the child would have an amazing father (never even considering what kind of a mother I would make) who grew yet again into a numbed, dumbed-down version of herself – a broken, tired, jealous, Peri-menopausal mess.

There is no heroism in me and very little strength.

The acts of kindness I like to commit are only a conscious effort to combat what I know about myself…to have something, anything, to put some weight on the other side of the scale.  I like to believe myself a Buddhist, a least a little, and a Christian, a little more, and yet I fall so short of the ideals, the teachings.  I can’t stop these tight, tears-behind-my-eyes, ugly feelings that come roaring up inside me like a sickness.

So yesterday, when all was said and done, I eventually reaped what I had sown – ripe seeds of nasty, intrusive, pissy, uncalled-for emotions.

But I’ll get back to that later.

My mom and I drove down for our Saturday Jonah visit, and, as Andy said later, “he was on his A game.”  He was so amazingly good.  Almost too good.  What do I mean by that?  I guess mostly that it’s easier to leave him behind when he is aggressive and scream-y and difficult.  When he’s so good, I want to hold him close to me and never let go.

I taped a small “conversation” I had with Jonah but I’m not sure how easy it is to hear.  If you listen closely, at the very end, Andy asks, “Jonah, what’s a fart say?” and Jonah blows a raspberry.

And not only did he go swimming at the river,

He dropped his purple “octopus” in the river and then just pointed to it. “Go get it!” I told him…

…so he did.

Jonah and his dad, running back to the car at Jonah’s request to go to “grocery store?”

Andy, strapping Jonah into his car harness as Jonah laughs hysterically and clutches “purple octopus.”

…as visions of grocery stores dance in his head…

…but we also drove to “grocery store” at Jonah’s request to buy waffles and syrup and orange soda.  I watched as my boy got his own cart, spun it around and into the store, expertly steered it past both produce and people, and acted like a good little kid, only occasionally asking for something we weren’t going to buy (and taking it very well when we said “not now” or “tomorrow” or any of the other distraction words — anything but “no.”)    Jonah acted better, even, than some of the other kids there.  Of course we did have to go to the self-check out to avoid any waiting, but still it was so incredibly cool to watch him growing and learning and doing so well.

When my mom and I left, it was with the hope we always have when Boo is good – that he will continue in this direction, steadily learning patience and life skills as well as academics, gradually improving, progressively making his way out of aggression and into verbalization.  Socialization.  Happiness.  It never happens, of course – there is always the backslide, but every time, we hope – we have learned its necessity.

When I returned home from our visit, I drove up to the Rensselaerville Falls and made a large nature art creation.  Nobody was around.  Nobody almost ever is…even when the parking lot is full, most people are on the ridiculously steep trails.  I hefted rocks that I looked at after I was done, wondering how I’d lifted some of them at all — then, with my rock-circle-wall sufficiently constructed, I began decorating it, first with two branches to make a cross, then with fallen leaves I could find on the ground or trapped swirling around a stick in the water.

I sat on a rock shelf nearby and listened to the waterfall, always rushing, never-ending, as calming and reassuring a sound I’d ever heard.  I first searched for patterns in the sound, and for a while I opened myself further and let them enter me.  When I arose from my reverie, I realized I had made this creation for Liam the Brave –  The sweet, suffering toddler for whom I made the box.

And I walked fully clothed into the area of water surrounding me, into the middle toward the next waterfall level, feet groping as the water rose higher and higher on me.  To my calves.  My mid-thighs.  My waist.  Close enough to the drop of the falls for the sound to swallow my screams, loud and long and enraged.  I screamed and thrashed around in the water as if dousing Wicked Witches into melting pools.  I cried and I sobbed.  I yelled primal, awful AAAAAHHHHHs, and, finally, raised my body tall and straight.

I walked purposefully up and out of the pool of water, back over to my rock creation, and felt the rage rise again.  I barely stopped myself from deconstructing the creation, rock by rock, and shot-putting the smaller ones into the water, smashing them against rocks, pitching them at the falls.

But I didn’t.  It isn’t mine anymore, I thought.  It’s Liam’s now.

I picked up my things – my bug repellent, my camera, my sandals – and carried them up the hill, along the trail, and back to the car.

It was not until the moment I reached for the driver’s door handle that I realized I’d locked the doors (something I almost never, ever do).

With a sinking heart, I realized I’d left my purse (with my cell phone and my keys) in the trunk.

And what did I do?  I smiled.  The karmic slap.  You reap what you sow, you jealous, angry bitch.

Instead of finding someone in the Huyck Preserve office (I was sure it was closed anyway) or knocking on a neighbor’s door to ask if I could use their phone to call AAA, I just smiled again.

I know what I’ll do.

I searched around the parking lot for a little while until I found what I thought was a hefty, perfect, pointed rock.  Then I walked over to the driver’s side way-back triangle-window, and brought down the rock as hard as I could, right in the middle of the glass.  Instead of hearing a satisfying shatter, I watched a white scratch appear as the rock bounced off.  It was loud as hell, though, echoing throughout the park.  Again and again I brought the rock down on the glass.  More and more and more white scratches appeared.  Some small nicks.  Nothing much else.  By now the glass would need replacing anyway, I realized, whether I broke it or not.

So I reached down, grabbed up the uncomplaining rock, and walked maybe two feet away from the car.  I aimed as best I could and threw the rock at the window with all the strength I had.  Rock bounced off window.  I picked it up and threw it again, where it bashed in the silver trim halfway between the way-back-triangle window and the back window.  Still I threw it again, this time making the familiar white-mark-scratch, only this time even further off mark, on the back window.

At this point I was half in tears at my stupidity and half-laughing at the strange fun of trying to bash a window in with a heavy, sharp rock.

Finally, I walked to the office, which was actually open, and found a young man inside.  “Did you just hear all that noise?”  I asked him.  “Yeah,”  he answered.  “I was about to come out and see what’s going on.”

“What’s going on,” I said, “is  I’m trying to bash out my back window because I locked my keys in the car.  Do you happen to have a hammer?”

He did.  Both a sledgehammer and a pick-axe.  He chose the sledgehammer and held it out to me.  “Do you want to do it or do you want me to do it?” he asked.  “You do it, please,” I answered, not wanting to make a wild swing and cave in the roof or something.

“Well I’ve never done this before,” he said before giving the window just a wee more than a tap with his giant sledgehammer.  The result was my anticipated, satisfying SMASH, glass all over the inside of my car.

If you look closely you can see where I white-scratched the back window and dented the trim.

I thanked the dude, stuck my lanky arm through the hole, unlocked the back door, opened it, stuck my body in the car, used my lanky arm to reach the front door lock and unlock it, popped the trunk, grabbed my purse, slammed the trunk shut and the back door closed, and drove the hell home.

Another view of my happy little car

And so, in one of the longest posts I’ve written in quite some time, there lies the moral of the karmic smash:

Don’t waste time being angry, or jealous, or resentful.  You’ll end up falling under the illusion of surface-sight and misunderstanding.  You’ll end up making assumptions that may not be true.  You’ll end up a grasping fool, unhappy and repellent.  There is no good in any of it.  Let it all go. 

Learn it, Amy.  And right quick.

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A year ago today, Andy and I dressed Jonah in a green “Hi!  My name is Jonah” shirt, drove him to the Anderson Center for Autism, dropped him off, and left him to live and attend school there.

I have a good memory for dates, so this was an easy one to remember – aside from the fact that it’s the day Elvis died (35 years ago today).  I woke up this morning with a strange feeling of dread, as though I were going to have to go through the whole thing all over again.

And yet something saved me from turning into the weepy self-pitying woman I, left unchecked, have the tendency to be.

That something was a boy.  And a box.

Someone on Facebook commented on the Scare Me Nots page (I am their facebook “mommy”) – and when I saw the name, I was compelled to look at their page.  The page is for a little toddler who enjoyed 3 months of health before seizures led to a discovery that his little brain is essentially degenerating – and there is nothing they can do.  I wrote to the boy’s mom and asked for her address so I could send her the Scare Me Not she liked.

Then, last night, I spent hours filling and decorating the box, all sides of the box, with pictures from books and magazines and calendars in my crafting basement.  I used a whole roll of packing tape and carefully adorned the box as though it were a gift in and of itself.  The process distracted me from thinking about how I haven’t had my Boo with me for a year.

This mama may not have her little boy at all for much longer.  There’s nothing like perspective to keep you from self-absorption.

When I got to work with the box in my passenger seat, I felt an urgency to get the box to her for her boy.  So I left work and stood in line when the post office opened, and I mailed it the fastest way I could.   Now I feel like I love her boy as well as my own.  I pray for him as I pray for Boo.  And after I mailed that box, I was no longer so worried, so pained, so obsessed with thinking, wishing, complaining, crying about my own boy — and I let go of holding myself bow-string tight.

Instead I felt humbled, and no longer alone in my sadness.  Pain is pain.  Loss is loss.  Everyone has to have some.  None escape grief and trouble.  We all have crosses to bear, some of them terrible.  Unimaginable.

Yet there is a hope we all must hold, that things will get better, that the light at the end of the tunnel is not an oncoming train but rather a beacon of sunshine.

That on the other side there is beauty — and others – even strangers – who really do care.

“All that matters is what we do for each other.”
  ~ Lewis Carroll

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I haven’t felt like blogging, which is unlike me, but lately it feels like I’m whining.  I feel envy and anger and grief, then I feel guilty for feeling envy and anger and grief.

In the midst of earthquakes and shootings, all I bitch about lately are first world problems:

I forgot to buy coffee creamer.

Jonah has a “management” at school (which is a euphemism for an aggression requiring a “takedown.”)

I have to write two articles for the Capital District Parent Pages this month instead of one, so I’ll have them done before I go to Mansfield, Missouri to see Laura Ingalls Wilder’s home & Pa’s fiddle on my birthday.

I haven’t been practicing/learning my Spanish enough.

That kind of crap.

So I went to my first organized party since I was in Four Winds.  It was my cousin’s son’s son’s 1st birthday.  (Boy, that sure dates me!)  I was afraid to go.  I’m always afraid to go to parties, especially when there are children and those children are regular ol’ kids running, playing, and making everyone smile.  I’m afraid my envy will burst through the fragile veneer of my smile – afraid I’ll cry and make everyone feel weird or uncomfortable.

Then someone says “you should have brought Jonah over,” and I’m afraid my anger will burst through the fragile veneer of my calm – afraid I’ll get snotty and say, “do you think I’d have placed my child in a residential facility if I thought I could bring him to a party?”  He’d attack the little ones and wreak havoc on the party-goers in general.  Of course it’s not as if the person who said that to me was being anything but kind and accepting, but still the anger rises.

None of this is fair.

But I kept the envy down and the anger away and simply enjoyed the people I haven’t seen for so long, all my relatives I love.  I did cry at one point, but it was only because my uncle M was talking to me and made me feel so embraced that my tears were ones of heartfelt emotion, pulled out of me by his loving-kindness.

Small steps.

On Saturday Andy drove Jonah up to my mother’s house.  It looked so threatening in the sky – about to rain, about to rain.  I begged God:  please hold off the rain until he gets a chance to swim (in my mother’s neighbor’s pool).  And then the rain did hold off so he could swim, and Jonah asked for train and we did see a train, and we ate sandwiches and chips and drank black soda.

On another note, I’ll buy a few Powerball tickets because it’s up to $305M.  Because that’s what people do…a dollar and a dream.  I never realized it before but there are all these websites where you can increase your chances of winning through statistical analysis.  I’m sure now I’ll definitely win Wednesday night, and turn my son’s school into a freaking paradise for kids with autism.

A few pictures from Saturday:

pimpin’ his Guster shirt

Jonah, in his element

My boo is still up and down, still attacking with no motivation.  Today when he aggressed, they were taking him to the pool, for God’s sake.

Nice goin’, Jonah.

I’m off to send pictures from the party to my aunt, and then squeeze in some Rosetta Stone.  Then sleep — beautiful, wonderful, awesome, comfortable sleep.

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* I’m not trying to call myself a blog star (did I coin a new phrase there?), but rather to give a small nod to the first video ever played on MTV.  Almost-twelve-year-old me was there to watch it all go down, and damn it was cool.  August 1, 1981 – we just passed MTV’s 31st birthday.  Video changed everything.

It still does.  I don’t know what it is about watching the video of Jonah in the last post, but I watch it & watch it & watch it again.   It’s as if the video allows (forces?) me to step outside myself, seeing Boo through a stranger’s eyes.  I can describe him until I’ve written a doctoral dissertation –but only the video can really show you his abilities, both excellent (swimming & his sense of humor) and not-so-excellent (lack of communication, and inappropriate noise levels).  Watching the video is different than the living of it.  Different scary.  Different real.  Or surreal.

How do I explain what I mean?

He’s ten years old.  He’s my baby.  Too soon to be an adult and, watching that video, I became afraid of all that means and how soon it is coming.  In fact it’s speeding up, as time does when we age somehow, and if I’m not careful I will worry in a million ways which will only waste time.

Operating under the assumption that I’m not involved, would I whip out my camera to film him aggressing and post it here?  I want to say yes – but I don’t know.

Anyhow, I found older snippet-videos, most of him swimming last year.  Here are two:

In this first video we see I am trying to take a photo of Jonah (who very accommodatingly smiled wide for the camera) and then realizing – duh – I have the setting on video.

In this second one you can hear him say “all ny-uh” – which used to be his way to say “all done.”   Now he just says “all done.”  He has come a long way at Anderson.  It happens so quickly, all of this everything.  Sometimes I feel as if I’m in slow motion, watching it speed past me.

For once this writer doesn’t know what to say or how to say it.

(Like that hard as hell Spanish course I’m doing on Rosetta Stone.  They make you say words when you don’t even know what they mean or how to use them.  I say the words over and over and over sometimes before they let me go on.  Never do you know the meaning of a word.  It’s all pictures, and repetition, letting you in on the secret of Spanish 0h so frustratingly slowly. 

Then you have to spell words correctly, accents and all with this keyboard tool they give you.  Then you have to hear the differences between ridiculously similar ways to pronounce two completely different words, like the words for baby and drink.   I have to admit, in English there are single words that mean different things.  Rose.  Lash.  Stream. 

Those are just off the top of my head.  Does Spanish also have this?  Am I even capable of learning it?  I forget all the words.  I don’t understand why it is “Tengo frio” (sorry, I don’t have my accents handy) and yet “Estoy hambre.”  If I’m even remembering that right.  One means I am cold and one means I am hungry, right?  Or no?  When do you use tengo and when do you use estoy?  And why?) 

End of rant about learning Spanish.  But if you know the answers feel free to chime in.  Por favor!

In exactly one month I will no longer be the answer to the universe.  (Unless I die before that, in which case I will always be the answer to the universe).

We’re coming up on the first anniversary of Jonah’s going to Anderson.

I miss him a lot tonight.

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Something woke me up early Friday morning.   I don’t know why, but I sat at my computer at 6am and read the news on Yahoo.  One person, standing in the front of a movie theater and opening fire.  I actually got chills.  It struck me harder than any other school shooting or killing rampage of late (and there have been plenty to choose from, no shortage there).  A brilliant man.  A brilliant, likely schizophrenic man who decided to do this unimaginable, horrible thing.

As I read the news I realized I’d been holding my breath and I thought Mark and I were just in a theater in Denver to see Guster with the orchestra and when I let that breath out I wept like my heart was broken.  I don’t want to live in a world where things like this happenI want off this planet.

But when I got to work, P put me straight with the perspective I needed, God bless her.

“How many people gave money to the bullied bus lady you told me about?”  she asked me.  I understood what she meant.  The good outweighs the bad – and by a lot.  It does it does it does.  She kept my mind from spinning off into a dark place.

See how much kindness phoenixed from the ashes of the bullying.  See how much good there is.  See that.

It has been a better day today, though I have to consciously embrace the belief that the Universe knows what It’s doing and I have to hang around and do what good I can for as long as I can keep it together, for my son, for his school, for kids with autism, for lots of reasons.

Jonah was a joy today!  It was a lovely day of sunshine and everyone had fun.  Of course, as soon as lunch and bath were done, Jonah wanted to go to the river.  On the way he pulled apart the sensory toy I’d just given him…one of those rubbery, squishy, nubby things.  This one was a caterpillar, but Jonah called it octopus.  He named the colors of each segment correctly, then yanked the pieces apart, turned them inside out, and tossed them around the car gleefully.

Down at the dock by the river, there was a washed-up, rather large dead fish, partially eaten away.  Jonah wanted to investigate and we quickly ushered him away from it.

You can see the big dead thing in the lower right hand corner of this picture.  Just after I snapped this, he pointed to it and announced, “broken fish.”

Yeah, you could say that. 

I love my Boo’s nomenclature.

He wanted to sunbathe on the dock ramp.

See how his feet are all turned in?  That’s his mama all the way.

YAY!  Water boy swims again.

Tonight my dear friend R is coming from Japan; I’ll pick him up in a few hours  at the train station when he gets in.  I’m fixing up a room for him, and he bought a guitar to use and have here in the US (he’ll be here for a month) before he goes back to Japan, where he teaches English.  It was delivered yesterday, and I can’t wait until he feels rested enough to play some.  I always beg him to play New Speedway Boogie, and though I have it on tape, nothing beats a live performance.

“One way or another, this darkness got to give…”

~ New Speedway Boogie;  The Grateful Dead

P.S.  I am on Rosetta Stone learning my Spanish for at least 1/2-1 hour a day now.  It’s really hard; they push you right along.  I keep repeating lessons.  I’m determined though, now.

Hablan a español o morir en el intento.  (Yes, I had to look that up.  I’m not that far along yet.)

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I love when Jonah’s school sends me photos:

Jonah, my little Boo, connecting his train cars carefully at school

Oh, Jonah.  Mama and daddy are trying hard to advocate for you while dueling eye docs offer equally insistent yet diametrically-opposed opinions on your Retisert implant & whether or not to take it out.

Eye doc number one strongly recommends NOT taking it out at this time and thinks doing so could be dangerous.

Eye doc number two seems anxious to remove it, and the sooner the better.

Every pediatric ophthalmologist I can find within this area is in the same practice as either doc one or doc two, so no real possibility for another opinion there, and these constant medical problems for my little boy are pissing me off today.

Stop piling all this shit on my child, damnit…. most of Jonah’s doctor visits are two-to-three hours long, odysseys of which Jonah endures with admirable spirit and patience.  The poor kid.  I do research online and pore over articles I can only half-understand even after two or three re-reads.  Today I called the nurse at Jonah’s school and am going to call his primary care doc first thing Monday morning.  We all need to advocate together.  Andy has long shifts of work now so it takes both of us to figure all this out.

There is more.  Doctor number one sees “activity” in Jonah’s right eye indicative of the same uveitis as the left eye.  Now Jonah has drops given to him in both eyes.  I’ve read articles about uveitis, claiming that it is responsible for 17% of vision loss, and I’ve read articles about how glaucoma is treatable until surgery is necessary.  After that I hate the word they say.  Blind.  I’m going to indulge in my histrionic state of mind and say if Jonah loses his vision I will go fucking stark raving angry, mad with the universe, mad crazy.  Mad.

I would never blame Divinity.  I don’t believe God works that way.  I don’t believe “God does not give you more than you can handle” and I do not believe “God only gives special children to special people.”  They are nice things to say but I do not believe them.

“I do not think God makes bad things happen just so that people can grow spiritually.  Bad parents do that, my mother said. Bad parents make things hard and painful for their children and then say it was to help them grow.  Growing and living are hard enough already; children do not need things to be harder.  I think this is true even for normal children.  I have watched little children learning to walk; they all struggle and fall down many times.  Their faces show that it is not easy.  It would be stupid to tie bricks on them to make it harder.  If that is true for learning to walk, then I think it is true for other growing and learning as well.

God is supposed to be the good parent, the Father.  So I think God would not make things harder than they are. I do not think I am autistic because God thought my parents needed a challenge or I needed a challenge.  I think it is like if I were a baby and a rock fell on me and broke my leg.  Whatever caused it was an accident.  God did not prevent the accident, but He did not cause it, either…. I think my autism is an accident, but what I do with it is me.”

 ~ Lou Arrendale, the main character.  He has high-functioning autism.

From Elizabeth Moon’s The Speed of Dark

I agree with Lou’s assessment of what God causes and what God doesn’t.

Years ago, before he had uveitis or glaucoma,                    posing with his big brown eyes

What’s keeping me from freaking out entirely is that God has gifted me with doctor number three, brilliant and kind, who lets me cling to him….all during breakdowns, emergencies, and these kinds of what-the-hell-do-we-do-now decisions.   He’s going to help us get to the bottom of all this.  He’s my ace in the hole.

For now I’m going to just enjoy seeing Jonah tomorrow.  He’s been a good boy, they tell us.  Good in school, good at his house.  Good = no aggressions.  Good is what I will focus on.  What you focus on expands, they say.

Focus.  I really meant no pun.  But for now I’m done.

(I didn’t mean to rhyme, either).

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“They say Jonah was swallowed by a whale
But I say there’s no truth to that tale
I know Jonah
Was swallowed by a song…”

~ Jonah by Paul Simon

Jonah has a broken finger incurred sometime during this morning’s tantrum/attack/aggression, on the bus that takes the kids up to the school building.  They took him to the hospital, x-rayed his hand, splinted his finger, brought him back to the house.  Not an enormous deal but one that caused me some concern.

His regular nurse was so kind when she called to tell me.  “Jonah is fine,” they always start out by saying.  Sometimes he isn’t – not really, but at schools like this everything is relative.  And he is fine.  He is safe and he is fixed up and it is over.

But I asked her to please contact Andy first next time.  Andy lives 5 minutes away.  I live an hour and a half a way.  I have a full time job, and I can’t be at my desk crying, like I nearly always end up doing.   I’m a crybaby, they need to understand, “strong mother” or no, and you can’t make me lose it at work because then nobody wins.  I need my job.  Let Andy call me at 5:30 when I get home from work and then tell me what happened, unless it’s an “he’s not okay” emergency.  Andy’s willing to do this and we’re going to try this new “leave mom out of the loop for a few hours” plan.

I’m tired of the merry go round.  I want off.  After a while it makes you sick to your stomach.  Your horse or your ostrich or your donkey goes up and it goes down, over and over, while the merry go round itself circles round and round, all with the bad-stereo strains of carousel music playing too loud and endlessly, no way off, no one to stop it all.

I just don’t have the fortitude.

for·ti·tude

[fawr-ti-tood, -tyood] Show IPA

noun

mental and emotional strength in facing difficulty, adversity, danger, or temptation courageously: Never once did her fortitude waver during that long illness.
They ain’t talking about me, folks.
Ah, but wouldn’t you rather see some new pictures instead?

Our dog Jack has the United States of America on his nose.  Look closely.

Jonah loving Guardian Gus

Beautiful rosebushes

Thus ends a long Thursday.  Across the miles I am holding my son in my arms, so close, smelling his hair, breathing him in, and he is calm, and we have snuggle time, and we are both swallowed by a song…a lullaby…

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There is a fine line between telling my story “sans sugar” and telling too much, or, worse, lacing it with saccharine.  The truth is, the narrator is still not exactly sure where she belongs in this world, if she belongs in it at all – but also that this doesn’t matter.  It’s all about Jonah.

For an only child like me it’s a tough pill to swallow sometimes.  It isn’t at all about me.  And yet, can I be relieved of my role in all of this?  Of course not.  Jonah needs his mama.

Still I sometimes think:  I can’t live this life anymore

And:   What a nice hot day to park the car at the top of the Rhinebeck Bridge — so perfectly inviting for suicidals – no barriers to your leap, yet reminding you every few hundred feet or so that LIFE IS WORTH LIVING.  I know I have mentioned this bridge before.  I’ve always wanted to fly, and that view is so spectacular, and if I ever did come to that fine line and cross it, I think that would be my place to fly-bye

And:  I wonder if other people have places in their minds, like I do.   My place is like the cyanide pill they ostensibly give you when you go up in the space shuttle.  It is a choice you may never have to make but one that’s comfortingly there nonetheless

I still, though, think:  I have to do whatever it takes to ensure Jonah’s health, education, happiness, and nurturing.  I must ensure everything.  Some of that everything is making sure things can stay the way the are, and it looks like things are going to need my help for that to happen

And I berate myself:  You ain’t going nowhere, fool

And I can dance around things that were said this weekend, and all the millions of ways, as usual, in which I was spectacularly weak.  But I’ll post pictures too, for Jonah was mostly good, albeit scattered and frenetic.

It was a sunny day, almost too hot.  A beautiful Saturday, and a good portion of Jonah’s day and mood mirrored that.

Andy was kind enough to drive Jonah up to visit us at my mother’s house.

my mom’s next door neighbors kindly let jonah use their play-set and pool, once it’s opened. jonah asked for “Pool?” a dozen or so times.

At home way at the top, my climber-boo

hey mama!!! hey mama!!!

Eventually he wanted to go see train so we piled in the car, Jonah singing along to the Top-40 Andy’s got on the radio.   We were relieved to see the green light down the tracks meaning a train is coming, so we pulled into a parking lot to wait and watch for it, like we’ve done hundreds and hundreds of times before.

This time, though, he got scared of the train after a few seconds.

This was the last of the pictures for the day.

Out of nowhere he grabbed for my hair.  I know what to do when someone pulls your hair (grab their fist and pull it in toward your head) so it wasn’t a big deal.  Andy got out of the car to let me out of the car, and then Jonah burst into tears, sobbing and upset.  Within minutes, though, he was okay and we were able to say bye bye to the train (thank God it wasn’t a long one) and go back to Grandma’s for another shower.  His beloved train reminded him of how much he misses home?  No.  Don’t invent things inside Jonah’s head, I tell myself.  You’ve got enough troubles inside your own. 

Today M and I went on a long Sunday ride, just like in the olden days when it was deemed neither wrong nor unusual to do so.  When we got home I planted flowers in the God-awful hot for about 13 minutes until I felt I would die.  I thought about Andy, and how unless I am mistaken he is working for somebody today doing some mulching under this same heat, and how under that same sun too my boy probably asked for pool ad infinitum.

Tomorrow I have to go back to producing numbers; here I can produce words.  It’s a fine line, my tightrope.  Sundays are difficult.  And I only took 3rd place in a “query letter” contest I was hoping to win.   And I’m not schooled in query letters.  Looks like I have some work to do.  First place was the opportunity and $500 to self-publish.  

I don’t really want to self-publish anyway.  Isn’t that, after all, what I’m already doing?

Anyway.  Jonah has his daddy close-by.  Today, after all that hot work in the sun, Andy came and got Jonah and kept him for another part of the day.

“He was fine,” Andy told me on the phone. “He had a fun day.”

For me, for now, it is enough.  As usual it is still only early evening and I am bone tired.  I imagine Jonah settling in to sleep.  I miss watching him sleep but imagining it is sweet — I can use memories and visions and dreams.  It is good.

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“And this is why my eyes are closed
It’s just as well for all I’ve seen
And so it goes, and so it goes
And you’re the only one who knows

“So I would choose to be with you
That’s if the choice were mine to make
But you can make decisions too
And you can have this heart to break

And so it goes, and so it goes
And you’re the only one who knows…”

And So it Goes, Billy Joel

The phrase “and so it goes” appears 106 times in Kurt Vonnegut Jr’s book Slaughterhouse Five.   The story continually employs the refrain “so it goes” when death, dying, and mortality occur, as a narrative transition to another subject, and to explain the unexplained. (from wikipedia)

This morning was the first of 5 doctor visits for Boo up here in Albany…and each time he’ll be escorted by his peeps, E & J.  Today we saw Dr. S, the glaucoma doc who is borderline strange but quite efficient, matter of fact, businesslike,  and nonplussed * unaffected by Jonah’s colorful personality. 

The nurses and staff all know us by now and are very kind to Jonah.  When we go there we wait in the hallway outside so Jonah can pace around, and they come out to get us when doc is ready.  In the meantime Jonah frolics in the hallway, crouching and running and shouting happily.  He loves E & J.   I love them too.

J put gloves on Jonah, and they played high five and gimme the pound, bumping fists.  Jonah’s getting to be such a good boy at his doctor appointments.  He is brave and sweet and funny.  Even if I’m under some sort of mother-spell skewing my perception completely, it feels good to have seen him, all lovey and silly.  Precious Boo.

He’ll need another eye operation; they want to take the Reticert implant out.  It’s been there 2 1/2 years now and Dr. S wants it out soon, so Jonah will have another appointment with Dr. S, but first an appointment at the pediatric rheumatologist, a pre-op appointment at the eye surgeons, then the surgery itself, then follow up appointments, etc.  Can you imagine if I didn’t have E & J?  Andy or I would have to pick him up and drop him back off every time.  The transportation to and from doctor appointments, paired with two individuals like J & E, is an invaluable service and responsibility.  I have no idea how they do it.  Thank God they do.

You probably can’t tell, but he’s laughing his head off here, wearing his exam gloves and knocking on the door three times, shouting “knock knock knock!” each time.  Little peanut butter, E calls him. He wanted me to give him noogie and knock knock knock lightly on his noggin, silly with giggles and ready for mischief.  Wan go van? he’d ask J on occasion, and J would distract him with lists of delicious things to eat:  french fries!  pizza!  bleu cheese! circle pepperoni

When it was time to go I kissed Jonah soundly as he settled into his cushion-y nest they’d made for him in the back of the van.  I entrust him to others. 

I have to, but with E & J, I am actually glad to. 

* I believe that most people misuse the word “nonplussed” – including me.  I always thought it meant “unfazed.”  Turns out it means exactly the opposite.  

So it goes.



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Today Jonah was a little lover, if a bit screechy and semi-hysterical.  I guess the usual.  Only one small glasses-snatching hair-pulling incident, but Andy pulled over and got him off me.  “Daddy in backseat?” asks Jonah incessantly, but neither my mom nor I can drive Andy’s stick-shift car so Jonah’s gotta choose between grandma or momma to have in the backseat with him.  “Momma in backseat?”  he decides in the form of a question.

He requested “Noogie?” right away.  I guess that’s how you spell it – when you rub your fist into someone’s head.  He loves playing knock knock knock on his head too, and though it had fallen out of fashion, his new gimme-the-pound (where you bump your fists together) has brought back the memory of his sensory-input fiesta.

Speaking of Fiestas, it is Cinco de mayo.  “Say cinco de mayo,” I told Jonah.

“Cinco tomorrow,” he answered with his big grin, shaking the maracas I’d brought him.  The pictures tell the story, a good one today, thank God:

(Watchdog Wally’s holding the maraca)

He’s shaking the maracas so fast that the one is blurry…

My big Boo, watching his beloved water…

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