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Archive for the ‘trains’ Category

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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“Well on the way, head in a cloud,
the (boy) of a thousand voices talking perfectly loud
But nobody ever hears him or the sound he appears to make,
and he never seems to notice…but the fool on the hill sees the sun going down,
and the eyes in his head see the world spinning ’round.”

~Fool on the Hill;  The Beatles.  (I changed man to boy, for Boo).

Fool on the Hill is Andy’s mother’s favorite Beatles song.   I remember little details and forget big ones.

It was not a good weekend for Boo, or so I hear.  I didn’t get to see him.  This weekend was our annual Spring Convention at NYPA, where we represent nearly 800 community newspapers and gather them all for a weekend full of training, fun, and elegance, this past Friday and Saturday at the Gideon Putnam in Saratoga.  As it involves months of preparation and hard word, it is particularly difficult on some people in my office, and they pull it off, year after year, with smiling, professional aplomb.  I don’t have that kind of whatever-it-takes to do it.  I tried, years ago, and couldn’t pull it off.   “The weak get crushed like insects,” young David’s father told him in the fabulous move Shine.

So mostly I attended a lot of classes, all taught by awesome speakers giving great advice.  Our keynote speaker at Friday’s lunch was Alex Jones, and I thought he was awesome.  I even bought one of his books when I got home:  “Losing the News: The Future of the News that Feeds Democracy (Institutions of American Democracy).”

Friday night there was a Gala, and I wore a slinky blue dress, flowing and sparkling.  I loved it when I saw it and bought it without concern for whether or not I could pull it off.  “Keep your shoulders back,” co-worker L kindly reminded me, for I tend to hunch in on myself, as if in an attempt to disappear completely.  If you’re going to sport a dress like the one I wore, you have to have something I just don’t have.  I felt shockingly thin and overly self-conscious.  When will I learn to find a fashionista friend to shop with me and be my Simon Cowell?  I don’t drink, so I didn’t gain “liquid courage.”  (In fact, one of the reasons I don’t drink is that at one gala I did get tipsy, and overbearingly begged for one publisher’s reminiscence of the Grateful Dead for way too long.  I’m still embarrassed every time I see him; I think he’s really cool.  When I am drunk I am a train wreck.  Best to avoid that.

Dr. Phil (who is not my personal guru or anything, believe me) says “You wouldn’t be so worried about what people thought of you if you knew how little they did.”  In this case I know he’s right. In spite of my stupid self-absorption I  had a great time and met lots of incredibly awesome people.  ‘Twas a success, methinks.  A big one.  The whole thing was made all the richer by the presence of a new bunch of people representing ethnic papers.  They were gracious and cool to meet and talk to, learn from.

At the end of the conference I gave one publisher’s daughter, little J, my ID card lanyard.  She wore it proudly. 

But

I am sorry for my mom and for Andy most of all.  I guess on Saturday Andy drove Jonah up to visit my mom, and everything was okay for a while, until car ride.   They went to see train and caught a long one, but Jonah quickly became agitated afterward.  My mom said he took off his pants, grabbed handfuls of his poop and smeared it on the back window.

God knows what else he did that neither she nor Andy told me about.  The cleanup, the tantrums, the shit quite literally all over the place, the ride home.  Dropping Jonah off.   Thinking about it and trying not to try not to think about it.

I was spared from it by convention, thank God.  Were I there it would have almost certainly been worse for everyone and maybe me the most.  The weak get crushed like insects.  Thank you to my mother and to Andy.

Tomorrow Andy and I have to take Jonah to a semi-emergency appointment to see the pediatric rheumatologist.  (The earliest appointment she had was in June and she squeezed us in now because we have to be quick about all this).  So far we’ve gotten lucky with Jonah’s doctors but we’re due for a shitty one.  Either way, it looks like there is eye surgery of some kind in Jonah’s future.  His right eye, blessedly, is fine. The doc appointments just  kind of just go on and on, but I guess that’s just being a parent.  We will save the sight in his left eye; I’m going to do my damndest to see that we do.

Next Tuesday is another appointment with Dr. Simmonds again, the glaucoma doc, and E and J will be able to bring Jonah up to that one.  I love those guys.  I know I keep saying it, but I can’t help feeling so grateful for them.  By then the glaucoma doc and the juvenile arthritis doc will have conferred and will have a good recommendation for what we can do.

Your mama misses you, Boo, and loves you very, very much.  But I’m not going to lie to the people this weekend – I’m glad I wasn’t there when you flipped out this Saturday.  I’m glad – even if that exposes me as a selfish little girl.

I am so tired today, I don’t have it in me to do much of anything at all.

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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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This all starts Thursday night and I suppose could make up a very long entry.  I don’t know what’s going to happen yet in the writing of it, but the living of it has stretched out miles in every direction.

This is Jack, our 90lb. 2 year-old dog (American Bulldog + maybe some mutt) named after Laura Ingalls Wilder’s childhood dog:

Jack loves to pose, statue straight, like in this picture.  He’s a sweetheart of a dog, curious and full of life, trying to jump up for a chance to lick you.  But he’s also all-muscle strong, and when I took him for a walk Thursday evening and he saw a squirrel, he launched himself forward full-speed; I held tight to his leash and was dragged up and off my feet like a fish on a line, landing with a hard smash on the side of my head, complete with skinned, bloody knees and a stunned shock that left me just lying there.  Jack came running back to lick my face, and I managed to get us both inside so I could lay down to rest.

As the night went on, I just tossed around in bed, my head hurting more and more.  I got up twice to throw up.  By morning there was no question of trying to get to work and by 10am I couldn’t take the pain and puking anymore.  M came and brought me to the ER where I was given an IV-cocktail of anti-nausea meds,  morphine, and whatever they mean when they say “liquids.”   The morphine was magic, whisking the pain away like a cool liquid eraser.  A few hours later they released me with bandaged knees, a negative CAT scan, a prescription for Loritab, a bill for $100, and instructions telling me I had a concussion and should rest for the next couple days.  I didn’t need convincing.  Woozy and weak, I gladly climbed back into bed.

But I knew this would be a long and difficult weekend for Andy, what with Jonah once again aggressing so much that it’s an abnormality when he’s not hitting the window in the car, Houdini-ing himself out of whatever harness he’s in, knocking over the lamp, the fan, the end table, toys, a glass – whatever is in his path – and running at you to kick, bite, scratch, and swat.

His preferred method of getting me is by reaching out lightning-fast (usually when I am putting him in his car seat) to grab my face in one hand, his fingers splayed like a starfish, each nail digging into my skin and scratching hard unless/until I can get away.  Let’s just say my reflexes are growing faster.

I felt well enough by mid-Sunday afternoon to watch Jonah some.  About an hour before I’d arranged to pick him up, Andy called me.  “Can you help me?” he asked, Jonah wailing and screaming in the background.

“Just go get his wagon from the park,”  he told me when I asked what I could do.  So I drove to the house, parked in the driveway, and walked up the street until I got to the little park behind the school.  And there, on the grass next to a green fire hydrant, was the little red metal wagon my mom had gotten him for his first birthday.  I stood for a moment and just stared at it, picturing Jonah flipping out, imagining how Andy managed to get him home, and wondering how many neighbors are witnessing exactly what kind of freakish folk we are.

If I’d had my camera on me I would’ve taken a picture of the empty red wagon.  It felt strange to take its black handle in my hand and drag it back onto the pavement, along to the corner, and down the hill of the street to the driveway with no passenger, a racket of rattling and banging announcing further craziness abounds! – a metaphor for everything I am, and do, and feel lately.

How were the visits yesterday and today with Jonah, M, and me?  I think if you read my blog much, you know.  It was difficult.  Our options are limited.  But we did go to grandma’s twice and he did have some good times too, like here on the slip-and-slide she’d laid out on the lawn…

…but even when happy he asks to go on to the next thing – car ride?  swim pool?  daddy?  train? swim pool?   I’d give a lot to have a pool, our own pool, where we wouldn’t be yelled at if he jumped or ran, where there were no other little kids for him to hurt, where he could swim his little heart out.  But there is no such magic pool.  My friend H even invited us to her pool, but she has a 3-year old so that wouldn’t work.  And we’ve been told that, because of his behaviors, he can’t attend the normal summer camp program; for the first time he has to stay back at school with other kids who, for one reason or another, can’t go to camp.  And guess what they have up at the beautiful Altamont camp?  A big huge pool.  SIGH.

M and I try to devise different things to do with Jonah – an empty park to take him to, a new car ride route, a walk in the woods, the SUNY fountains maybe?  We don’t know.  After 3 and a half hours or so, I am gladly bringing him home to daddy.

Once again I pause to wonder at Andy’s mental and physical fortitude; his courage, determination, and patience.

He is stronger than I – always has been – and I am grateful he is the one caring for our precious, out-of-control, enigmatic puzzle of a son.  Please God get us placement for him somewhere soon – even as it rips at me – I feel like we’re losing him and they can bring him back.  I’m counting on it.

I’ll be not-unhappy to go back to work tomorrow, skinned knees and all.

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Sometimes it amazes me how much happens in our lives between blog posts.  On Friday morning, one of the specialists from Wildwood School called me at work and she asked for the status of Jonah’s admission into Springbrook and Tradewinds.  It’s not great news.  Tradewinds (in Utica) has accepted him but they’re full and we have to wait indefinitely for a spot for Jonah.  Springbrook may or may not take Jonah, depending on whether they can squeeze him in among the kids they’re bringing back to NY from out of state.

Then she told me the functional behavioral assessments aren’t working – that almost always they can determine the cause/antecedent for a child’s behaviors – at which time they can then implement a plan, which almost always works, at least to some degree.  But with Jonah, the functional assessments come out different every time.  Avoidance, say, or attention-seeking.  And oftentimes, nothing at all.  Even during preferred activities he will sometimes aggress, lightning-quick and without any warning whatsoever.

She told me Jonah’s quality of education is now practically gone; they’re just managing him at this point.  I realized suddenly that, in a sense, I’ve been an ostrich mom, hanging on to the ‘promised placement’ I used to fear and now long for, burying my head in the sand until I can entrust Jonah to the hands of other people – professionals…experts…specialists who will help our boo get better…people who will unburden me from everything I don’t feel like I can take anymore.  With that realization came some sort of a second wind…an epiphany that no one will help us the way we’ll help ourselves, though Wildwood sure is trying.  They are kind and encouraging, diplomatic and sensitive.

They’re helping me look into other options – other residential places they’ve seen and are very happy with…the Anderson Center, they say, in Staatsburg NY, near Kingston, though we once scheduled a tour there and canceled it, back when I thought I could be picky about schools and we wanted something closer.  Wildwood also suggested ruling out physical causes for his aggression – something we’d suspected but weren’t sure if we should pursue because of the trauma all the doctors and travel and tests would cause for Jonah.  Was it worth it, we wondered, when the so-much-more likely cause was simply a severe symptom of autism?  Now it looks like something else really is going on – physically, or neurologically, or God-knows-what.   I know it’s time to do more.

So I approached my boss all a-wreck, explained the situation briefly, and asked if I could take an hour or two to make some phone calls, please.   She was very understanding and said of course.   I went back upstairs, closed my office door, cried, cursed, swallowed half an extra dose of klonopin, and breathed in and out, in and out, in and out…slowly getting my shit together.

First I left a message at The Anderson School to schedule a tour…then I called a parent or two, for advice and guidance.  I left a message with a doctor here in Albany who (one parent told me) can run a full round of blood and genetic tests.  I called Boston Children’s Hospital to make an appointment.  I called Jonah’s pediatrician to order a sedative so I can get him there.  I called a homeopath.  I went online and ordered fish oil chewables.  I researched PANDA and gluten/casein diets – the former I’d never ever heard of, the latter was something we’d always dismissed for Jonah, since it never seemed he had any stomach issues, really, and we didn’t think there was much more than anecdotal evidence to support trying it.  Also, since Jonah’s recently been clinically diagnosed with juvenile idiopathic arthritis, I called the Arthritis Foundation as well, told my story, and was promised they’d get back to me soon.

Now momma-ostrich is awake and determined, shaking off the sand.  We’re gonna figure some shit out no matter what I have to do.

That was Friday.

Today M and I picked up Jonah to give Andy a break.  It was a beautiful springtime day in the 60s with sunshine, high pulled-cotton clouds, and that wonderful new-season-scent that pervades everything.   We went to the woods behind Russell Road park and Jonah practically skipped down the path, smiling and happy.

He loves the woods, is gleeful in the forest.   He was so good for us.

We let him slide in the dirt and toss handfuls of pebbles, hug birch trunks and throw twigs around.  (He was unable to hurt anyone, even if he’d wanted to, though he was as far from aggressing as I’ve seen him in a while).  Unencumbered by rules and regulations, alive and free to do as he pleased, he scampered – digging in the leaves and earth, running down the path ahead of us, laughing… again my sweet, fun, awesome little boy.

When he’d had enough of this particular forest, he requested train, donut, and waterfall, all his favorites and all within reason and reach.  After a speeding train and a third of a donut, which he politely handed back to us:  no donut – we drove on to the falls.  For the first time this year we walked down to the water, though he didn’t ask to go in.  Again he cavorted, explored, told me bye bye – and as I walked 10 feet or so away, he stood watching and listening to the falls, at home in his little zen-place.

In the midst of the storm of our lives, it was a pretty good hurricane eye.

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rewrite

“I’m working on my rewrite, that’s right
I’m gonna change the ending
Gonna throw away my title
And toss it in the trash
Every minute after midnight
All the time I’m spending
Is just for working on my rewrite, that’s right
I’m gonna turn it into cash

I’ll eliminate the pages
Where the father has a breakdown
And he has to leave the family
But he really meant no harm
Gonna substitute a car chase
And a race across the rooftops
When the father saves the children
And he holds them in his arms

And I say help me, help me, help me, help me
Thank you!
I’d no idea
That you were there
When I said, help me, help me, help me, help me
Thank you, for listening to my prayer…”

© 2010 Words and Music by Paul Simon

This has been a tough day.  I felt anguished and guilty, helpless…I wanted to leave.

But eventually I dried my stupid tears, took pictures of beautiful things, and kissed my little boy (with his incredibly dirty face and feet) before returning to the basement apartment to watch Match Game on DVR.

At least my new Paul Simon CD came in the mail today;  Paul’s one of my favorites (yes, I do love other bands and artists besides Guster)… I love his new music and was cranking it in the car today.  I tried to put it on when Jonah was in the back of the car but after 3 seconds or so he cried:  Cranberry Guster?  So I changed the CD and we drove to see the train, which never came.

“dir-fee!  dir-fee!” he called over & over until I realized he was saying “dirty feet.”  He’d been running around the yard playing barefoot when I arrived after work.

So to make up for the coherent post I just don’t have it in me to write, here are some pictures:

train comin?

in the background, buddha looks on at the near-blooming tulip & stonepile

magnolias blooming outside our kitchen window at work

dirty feet

i love cushy yellow ball

we’re forever crossing bridges.

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I will not remember today as Easter so much as the last day of Jonah’s vacation.  Tomorrow he’ll probably be a hellion at school, but he wasn’t so bad this week, as long as it must have seemed for Andy.  Jonah adores his daddy, after all, and when he’s home on break his routine is filled with no-pressure stuff like car ride and grandma and peanut butter roll.

Besides, Easter doesn’t feel much like Easter this year.  My mom, God bless her, made a big ham dinner last night and separated it all into Tupperware and packages, some for Andy and Jonah and some for M and me.  Today when M and I watched Jonah, we saw the train and stopped at grandma’s to visit and pick up our share of her Easter feast.

There’s no sitting down and eating it, you understand, without thrown food and overturned dishes, splashed drinks and a constant Jonah-vigil not worth attempting anymore.  Jonah showed little interest in the Easter basket grandma filled with bubbles and chocolate, jelly beans and spinning tops, running instead up the stairs, down the stairs, and up again into the spare room where he jumped on the bed screeching.

Then he wanted grandma to go for a ride with us.  When we’d buckled him into his harness, his beloved grandma seated next to him, he decided:  bye bye grandma.  You want to go bye-bye with grandma, or you want grandma to go bye-bye?  We didn’t know.  We never know.  He changes his mind before we can puzzle it out:  Grandma come on car ride, he said.  So we headed off for a tour of Latham and Loudonville but only got maybe 1/2 mile down the road before he pronounced:  all done grandma.  So we turned around, drove back, and dropped my mother off.  I ran inside to get Jonah’s basket and our dinner, and we left.

M and Jonah and I ended up at the Rensselaerville Falls, as usual; it is much warmer now and the snow has melted in all but the most shadowy pockets of the forest.  As usual Jonah ran way ahead of us and only wanted to stay a short while; even he understands it is still too cold to walk down to the water and wade.

This morning my friend texted me a picture of her little 3-year-old boy, seated on the couch with two baskets, a big smile on his face, the message reading:  Happy Easter! 

It’s the kind of thing you’d send to a bunch of people in your address book.  I stared at the picture of her sweet little boy, his huge smile — the Easter Bunny came!   I texted Happy Easter back to her and put the phone down, wondering:  What is it like to raise a neurotypical child?

I’m sure it’s actually harder to dress your kid(s) up, get to church and the family gathering, then come home exhausted with the kid(s) all hopped up on candy.   Hell, I ate half Jonah’s candy myself without him ever knowing or caring, and the only place we had to go was on a car ride to the woods to watch a waterfall…so we had an Earth-Day Easter…

I took a lot of pictures today, as you can see.  I also made some necklaces and put together a care package for someone.  I like to imagine the surprise of getting a box of fun things out of nowhere and for no reason at all. 

Guster has this video I love and play whenever I start to lose my faith in humanity, when I feel my hope waning.  It always makes me feel better.  I want to be a part of things that make people happier, even if it’s just one person at a time.

Anyway, after M and I ate our homemade dinner, I polished off a piece of J.S. Watkins cheesecake my mom had procured, then a healthy slice of humble pie as well.  Ah, all the complaints I spew.  And how small my little life really is.

Easter was delicious.

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