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Posts Tagged ‘Willie Wonka and the Chocolate Factory’

Back in the day, Jonah adored the movie Willie Wonka and the Chocolate Factory.  That’s not exactly accurate, either, because what he really loved was one scene. You know the one, near the end where Grandpa Joe and Mr. Wonka are screaming at one another…

Mr. Wonka: You STOLE fizzy lifting drinks!  You bumped into the ceiling, which now has to be washed, and sterilized, so you get NOTHING!  You lose! Good day, sir!

Grandpa Joe: You’re a crook!  You’re a cheat, and a swindler – that’s what you are!  How could you do a thing like this?  Build up a little boy’s hopes and then smash all his dreams to pieces?!!  YOU’RE AN INHUMAN MONSTER!

Mr. Wonka: I SAID GOOD DAY!!

For whatever the reason this absolutely smashed Boo’s funny bone.  He’d giggle and laugh and sometimes almost literally shriek with joy.

More this he would ask, and I’d have to rewind back to the beginning of that scene and play it again, usually 10 or 15 times in a row.  We watched it together so often that I began to dream of sterilized ceilings, inhuman monsters, and dreams smashed to pieces.

I’m not sure when it happened (because of this blog I could look back and pinpoint it), but for a long time now his little joys and interests, like the Willie Wonka scene, have waned and all but disappeared – replaced by a devotion to car ride alone:  mama in the front.

But two weeks ago when Andy and I drove to pick him up, he first (as always) greeted us with music on? and then, after just one car ride (an unvaried and specific loop), requested go back to ‘partment?

Surprised but happy, we drove him to Andy’s place, where grandma was waiting with Jonah’s favorite foods.  Once inside, he almost immediately attacked Andy, ripping yet another shirt and biting him on the wrist, drawing blood.  Andy got him down on the floor and tried to keep him still, while I held Boo’s legs so he couldn’t back-kick Andy in the kidneys.  We are strangely quiet during all of this, even Jonah. The only sounds are Jonah kicking and hitting us or the floor.  We’re grown used to it, and we’ve come to believe that if we can just get one attack out of the way, Boo will be okay.  Sometimes even really sweet and especially happy.

Sure enough, Jonah calmed down and after that he was fine.  Better than fine.

Train on computer? he said. I was floored.  He hasn’t asked to watch trains in what feels like years.  So, as small a thing as it sounds, I was thrilled to see a spark of interest in something besides car ride.  So I set him up on YouTube, typed in railfanner, and Presto Change-o, my train-loving Boo is back, staring with rapt interest at the coming and going of the endless speeding cars.

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And after a while, just as amazingly, he looked up at me and asked Oopma Oopma? – which is always how he requested the scene from Willie Wonka.  And so once again I happily obliged, the scene eliciting the same smiles and giggles in which we all once rejoiced.

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The next day at school, Jonah went after a staff member in the residence who did his best to restrain him safely, but Boo ended up hitting his face on his dresser and being brought to the hospital, coming back with a few stitches in his lip and a swollen black eye.  We are grateful to the caregivers who stayed with him, keeping him calm, safe, and occupied, until he could go back to his residence.

By our next visit the swelling had gone down and Jonah was his usual happy self.  He asked for train on computer again and even handed me his Jungle Book Disney movie to play.  So I set it up for him and watched him wait patiently on the floor, where he threw down a little yoga move (they teach the kids simple poses in school but I’d never seen him do one spontaneously)

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…and settled down to watch the movie – nearly 30 minutes of it! – before declaring all done Jungle Book.

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No aggressions that day.  None.  Not sure when the last time that’s happened, either.

I type ad nauseam of hope, and despair, and the tiring, endless cycle of the two, but a constant thread through both is change, always change – and growth, and learning, and steps forward.

There is.  Thank God there is.  Always there is something sweet to savor, and I am evergrateful.

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Sometimes when I don’t blog for a while it’s because of a superstitious belief:  because everything is going well with Boo, I mustn’t write about it because it will break the streak of good, of happy, of laughter and kisses and hugs and learning.

Of course it is just superstition, but when you’re in my position you will cave to anything that works, or seems to work.  And that’s not the only reason anyway.  Without giving too much information about me, I had a hard February.  The kind of hard where I called a new psychiatrist for counseling and to adjust my meds and I called my OBGYN to figure out what the hell kind of hormonal changes are happening to me at the age of 44 1/2 to make me suicidal one day and joyful the next.  Menopause?  I already have osteoporosis and arthritis so why the hell not.

This will not do.

And so in the meantime I meditate and I pray and I work and I try to get outside – it’s so easy to hibernate most days when it is so damn cold and I work from home.  Some weeks the only time I go outside at all is to go visit Boo.

I didn’t even go to the advocacy thing I spoke about in my last post.  I was about as depressed as I get that day accompanied by a migraine that slammed me down into puking and crying.   Weakness.  My mind and my body betray me all the time, just when I’m ramped up to DO SOMETHING about all the low-functioning kids and their situations, just like mine before we were able to place Jonah at the Anderson Center for Autism.

And so for the first time in a month –  Two months?  – his school called me on Monday AND Tuesday to tell me that Jonah had gotten aggressive to the point that he needed “a two-person take-down” — meaning they’d had to subdue him physically.  Of course they know how to do it without harming the child, but someone always gets hurt in the process – usually a teacher or caregiver.  I suppose that’s better than another child, at least.

When I wrote to his room head teacher she told me she thinks it was because she was out sick on Monday, and on Tuesday there was a new child in the classroom.  Jonah does not do well at all with change.   Yet sometimes, as has happened many times in the past, there is no antecedent at all and we are left to wonder what the hell made him “flip out” for no reason we can discern.

It bursts my bubble again and again, and the longer Boo goes doing really well between aggressions, the bubble bursting hurts all the more.  Then again when I compare it to 3 years ago or so, I have to remind myself that it used to be 8-12 aggressions a DAY.  So I get out my trusty old bubble wand, blow some more bubbles, and hope.

He has been happy when my mom and I visit on Saturdays, dancing and singing and eating his lunch, taking his bath, requesting his Oompa Oompa, shrieking with joy, asking for car rides.  It’s our routine and he enjoys it.

Then I found a group on Facebook, thanks to an online friend, for people dealing with children who have “classic autism/severe autism.”  I expected the usual – a bunch of people arguing about diets and treatments and drugs, parents insisting “if you just do this you can cure your child of autism,” etc.  I was never so wrong in my life.  It was a light of love that I found — a place where you can say what is happening to you and your child without fear of judgement or blame.  A place where everyone affirms one another, cheers for the accomplishments and offers empathy for the disasters.  It is the best place with the best people I have ever found since Jonah was diagnosed, and I wish I’d found it long ago.

Because Asperger’s ain’t what we’re dealing with and yet that’s all anyone talks about in other groups, it always seems.  Parents bragging about their accomplishments, lifting their child(ren) out and away from the autism and into social groups and “regular” schools and how they take their child everywhere with them; that’s why their kids are doing so much better, don’t we see that?

I hate that shit.  I could never take Jonah anywhere with  me (in public) since the time he was a little baby, without facing stares and glares and the whole rest of it – my screaming, crying, unhappy Boo hating the car seat carrier, unable to participate in the little “music and movement” classes I’d enrolled us in before he was diagnosed.  Then, later, attacking random people in the mall, at the “family” restaurant, at parks and playgrounds.  And always the ugly glances, always the eyes boring into mine, the message loud and clear:  God what a bad parent she must be.  What a brat she’s got….until I prayed for winter to give us the perfect excuse to hibernate inside.

This new group is a cyber-world where I cry for others’ children and they cry for mine.  Where we offer each other suggestions and support but not any of that “I’m right and you’re wrong” bullshit.  Where we read one another’s stories, watch heartbreaking or joyful snippets of video, share blog posts, hugs, prayers, ideas, and love.   Where no one has to feel alone, or persecuted, or guilty.

I am so grateful to have found them, my fellow aliens on this planet of normalcy, so many of them suffering worse than I ever did, with other children to protect and deal with, often more than one on the spectrum, sometimes facing heart operations or other serious medical problems on top of all the other stresses.  God bless them all.  I don’t know how they do it but I do know how they do it — because life isn’t offering any of them a choice — you do it because you love your child(ren) beyond reason and would do anything to help them when they are suffering.

And so now I am no longer alone in this, not at all, not ever.

Yesterday when my mom and I visited, Jonah was happier than ever.  Laughing, giggling, smiling, lovey.  He pointed to the computer and asked for train and I put on an hour long video from YouTube with endless trains coming and going, coming and going, made by some rail fanner adult.  Boo sat mesmerized, first on my lap and then alone in the computer chair, alternately single-mindedly catching the visuals of the movement of the trains with a dumbstruck look on his face and smiling at the approach or departure of the train.  “Bye bye train!” I say, every time a train rounds a corner and disappears, only to be replaced with another approaching train.  Boo smiles, giggles, eagerly anticipating the next train.  Over and over.  Train after train.  When I had him on my lap I breathed him in at the back of his neck, gave him little mama kisses all over his shoulders, rubbed his back, whispered “mama loves you so much” into his ears.  I drink him up every time I see him like this.

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And, on his car ride, as happy as the song playing on the radio:  Happy by Pharrell Williams.

My mom and I left in a satisfied state of happy ourselves, both of us saying “thank God” as we get into the car to drive away from Andy’s apartment, where he and Jonah will have “quiet time” in the big blue bed, just lying together, and sometimes Jonah will take a nap.

Then, later, the daily phone call from Andy, always around 8:08pm, always just after he has called Jonah’s residence house to see how Jonah did that evening – on Saturdays, particularly, after Andy has dropped him back off.  The news wasn’t good this day.  Always Jonah cries a little and maybe tantrums as he is being brought back to his residence.  He likes his residence and has his favorite people there but still leaving daddy behind is hard for him.

This night his favorite staff members were not there, and he was angry, and did not want his dinner.  They have other foods to offer the kids and he asked for a bagel.  I want bagel please? he kept asking, over and over even after he’d been given one.  His voice gets more desperate and he cycles through a million things.  Bath?  Car ride?  Train?  Bagel?  Bagel?  Bagel? and he ramps up even more, torn between a mysterious desperation and an OCD-like anger and sadness.

Eventually he went into his room and was quiet for a while.  Then one caregiver heard banging and crashing, and when she went into his room he was kicking the walls and throwing items around, frenzied with the sadness/anger again.  When she gently asked him what was wrong he flung himself at her, attacking her, and eventually needing 3 people to get him under control.  Another bubble burst.

God forgive me but I am grateful I don’t have to see it, to be the one attacked anymore, to have the freedom of being removed from it all, physically if not emotionally.

I have gone from this scratched-up, bruised, beaten down person

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to this person

View More: http://ourtwohearts.pass.us/the-beautiful-amy

in three years.

I can’t believe the difference.

And Jonah has gone from this child:

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to this one:

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I have to remember that despite the setbacks, in general we are both so much better, so happier.

And if I am upset or confused or angry or sad, I know I now can reach out to my new peeps online in the Facebook group, and there will be understanding, there will be light.

I will try to post more often, superstition be damned…

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So I allowed myself a break from telling the story of Jonah and our ups and downs…the roller coaster twisting racing in turns of joy and aggression, stopping at the station for deep breaths of still, of peace, but the safety bar won’t raise – it never lets us out – and then after a day a week a month the announcement to keep hands and feet inside the vehicle, and we’re off again and climbing that hill from which comes the fall the fright the feelings, stop the ride I want to get off please.

It’s the same shit I always spout and am tired of spouting.  How about this year I turn my metaphor around, into a river…not round and round but journeying somewhere, rocks and rapids notwithstanding?  Not so much dizziness but the radical acceptance of a fluid situation.  Change not as an event but as a constancy.  Journeying not with a destination but as the destination.

Yeah, like I’m gonna turn all Zen.  Well I can give it a shot, anyway.

First the third wake:  my friend K’s father passed away from the lung cancer that killed him on Friday the 13th of December.  Her bravery and strength, the way she carries this burden like a strong woman of faith with a will of iron and a heart of truth and beauty…she is the only child, like me.  Now she slams the door shut on 2013 and perhaps is still in shock that her father will not be there in this new year.  How strange is grief, and the different ways it works its necessary, surgical-like job inside each one of us when we mourn.  I have tried to be a good friend but still feel helpless.  Through it all she managed to make batches of Christmas cookies and gift them to me along with a Willie Wonka shirt for Jonah with Oompa Loompas on it.  I am proud to call her one of my closest friends.

My real-life-friends have whittled down to a few, but they are gems who have stuck with me no matter what – without judgement or competitive bullshit or cattiness.  That feels right.   In 2013 I have given and forgiven; I have risen to the occasion and I have fallen apart.  I’ve slipped and stayed lying on the ground for a while.  I’ve crawled and danced and risked everything and lost my shit it felt so good to smash that glass all for a better way to get through this life, for better things to do, for more important goals, more impactful work.   I’ve soared higher than ever on the warmest winds of change and beauty.  I’ve cried my eyes out both in sorrow and laughter.  I’ve lived. 

During the month of December I also allowed myself to feel the angry, awful pull in my heart every time I saw kids waiting for Santa, counting days, getting excited, dressed for photos, new babies joining bigger siblings by the fireside as mom bakes cookies, the whole Christmas scene and winter family fun I envy.

Then I take the time to realize half of what we see is illusion anyway, and the other half probably would envy my ability to give my boy bubbles, tangle toys, and a Willie Wonka & The Chocolate Factory DVD for Christmas while they are faced with kids who want iPads and gaming systems – the right sneakers and the cool outfits, hundreds and maybe thousands of dollars of presents.  Of course this is all conjecture and generalization, but you get the idea.

There are no right outfits for Jonah, unless you count the fact that comfort is king.  In fact, Andy drove Jonah up to my mother and me on Christmas in jammie bottoms and an unmatched shirt, because that’s what Boo wanted to wear.

Jonah Boo, playing on my mom's floor with a flashing turnabout radio-controlled car

Jonah Boo, playing for a few minutes on my mom’s floor with a flashing turnabout radio-controlled car

My mother had cooked a ham & pre-prepared it all into containers for us and, just like Thanksgiving, we spent Christmas on car ride seeking a train that once again refused to come because it was a holiday.

I caught the little bugger for a Christmas pic with mama

I caught the little bugger for a Christmas pic with his mama

My mama and me

And one of MY mama and me

When Jonah loves a particular scene in a movie or show, he'll run up to the TV with a happy screech

When Jonah loves a scene on TV or in a movie he will run to the screen with a happy screech.  Here’s another example, taken a few days later:

Still Willie Wonka on the screen

Still Willie Wonka on the screen

And the coolest pic of all, methinks, because Jonah is watching on one side and a kid IN the movie is watching on another:

I love this pic

Here comes the falling somersault

So I may not have a lot of details to share, some because I chose to forget and some because I am too lazy to type out a month’s worth of details….but there are many moments of Jonah being his repititious-yet-never-boring self.

I have to give a shout-out to Jonah’s dad, Andy, who as usual has come through in his amazing father way.  Since he lives so close to Jonah he sees him more than I do — but that doesn’t mean he has to pick him up for visits as much as he does, or withstand the aggressions, the emotional strain, and the exhaustion which nearly almost follows a visit — he has picked Jonah up for a visit whenever he can, whenever he is not working.  Always he is patient and takes Jonah on all the car rides our boy so loves, playing Prince CDs for Jonah (which is kind of like me playing Guster CDs for him, because Andy loves Prince like I love Guster).

Always he is a wonderful father.  The best parent with the strongest constitution and all the love in the world for his precious son, his only child.

Here is Jonah crying because we forgot to bring his favorite Prince CD on the car ride.  Luckily we were not far away and were able to return to the apartment to retrieve the longed-for CD.

"Diamonds and Pearls?!"

“Diamonds and Pearls?!”

This is not a boy with autism having an aggression.  This is a kid who wants his Prince and ain’t afraid to cry about it.

Oh the humanity

Oh the humanity

Poor Boo.  The aggressions I thought might be gone for good have returned.  I have no idea how many times the pendulum has to swing before I get it through my head:  pendulums swing – it’s what they do.  Perhaps I can incorporate this into my head as well this year. Or, better yet, find a way to blow up the pendulum.  Smash it all to hell.

I’m gonna learn play my new acoustic guitar (thank you Richie, who came to visit from Japan, for teaching me the 1-4-5 progression, which means I can play about 10,000 songs very poorly so far)…and maybe try a song or two for Jonah…

yes I asked for this specific one because I am a DUMMY with an acoustic guitar

Yes I asked for this specific one because I am a DUMMY with an acoustic guitar

So here is a 2013 pictorial to usher in what I pray will be a better year – for everyone!

The Year of The Eye: January 2013

The Year of The Eye:
January 2013

March:  more eye doctor

March: more eye doctor

April:  thumb-sucking contemplative Boo

April: thumb-sucking contemplative Boo

May:  waking up from the eye operation to try & save the sight in his left eye

May: waking up from the eye operation to try & save the sight in his left eye

June: The endless wearing of the eye shield

June: The endless wearing of the eye shield

July:  a smile through the eye shield

July: a smile through the eye shield

More daddy-love in August

More daddy-love in August

No more eye shield.  The operation didn't save his sight.  Thank God for Boo's healthy right eye!

September:  Happy Boo, rocking back and forth to a tune in the car. The operation didn’t save his left eye’s sight, though. Thank God for Boo’s healthy right eye!

October:  visit to the juvenile arthritis doc - everything looks great!

October: visit to the juvenile arthritis doc – everything looks great!

November:  Boo asks if the nonexistent "Thanksgiving train" is coming, and points to where he thinks it'll come from.

November: Boo asks if the nonexistent “Thanksgiving train” is coming & points to where he thinks it’ll come from.  He looks hopeful.  Sorry Boo!

Rockin' his Almanzo Wilder Homestead shirt & eating some chips and dip...

December: Rockin’ his Almanzo Wilder Homestead shirt & eating some chips and dip…

Boo’s ready for 2014.  We’re three days in already and “Snowstorm Hercules” (I guess they’re naming all the snowstorms now) has dropped maybe 7 or 8 inches here in Albany.  Hercules my ass.  They should have named it Deep Freeze — it’s about negative 4 outside and even opening a curtain feels like I’m subjecting myself to snow-blindness from all the white-bright.

P.S.  My biological family does not want anything to do with me.  Surprise surprise.  It was a bee sting, really – for a short while it hurt, burned, stank of rejection and things not right or fair.  I cried.  Then I got up off my ass and put some calamine lotion on the whole mess and flicked the bee off my arm.  That bee died stinging me, just as this biological-relative bullshit is dead to me now.  I am blood-related to Boo, and that’s all I need.  That, and the family I already have and love – including those outside my adoptive family whom I have chosen to adopt as sisters or brothers or cousins, DNA be damned.

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World English Dictionary
Revelation
(ˌrɛvəˈleɪʃən)

— n
1. The act or process of disclosing something previously secret or obscure, esp. something true;

2. A fact disclosed or revealed, esp. in a dramatic or surprising way;

3. Christianity:

a. God’s disclosure of his own nature and his purpose for mankind, esp. through the words of human intermediaries.
b. something in which such a divine disclosure is contained, such as the Bible.

– 0 – 0 – 0 -<3

It has been a week or two of revelation.  Jonah, sprouting up tall and learning self-calming techniques from his teachers and caregivers, is almost a different child.  Yet Boo keeps it real always, never letting us forget he is and may always be what I half-jokingly refer to as a “punk ass.”

Consider this photo taken yesterday while on car ride:

his arm raised to hit, boo narrows his eyes and sucks his thumb like it's the bad-assest thing a kid could do

his arm raised to hit, boo narrows his eyes and sucks his thumb like it’s the bad-assest thing a kid could do

The difference is he did not hit that time.

I just turned back in my seat and ignored him, knowing my picture-taking, even sans flash, may be pissing him off.  He did not ratchet it up – no pulling my hair or Houdini-ing himself out of the harness.  No dissolving into tears or throwing reachable items from the backseat into the front.

I think he just wanted to enjoy his car ride, unfettered by attention or expectation.  We are beginning to understand one another more, in a strange way I can’t quite explain.  He is getting older, and learning independence skills.

Yesterday he cleaned up after himself like a pro, going overboard like only a child with autism can:  Upon deciding lunchtime is over, Jonah picks up his plate and any surrounding napkins or garbage, opens the garbage can lid, and carefully throws it all away.  (And instead of using the garbage can as a perch/stool…

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…like he used to, more often than not now he will sit at the table).

Then he grabs the potato chips and returns them to their rightful place – in the right-hand cabinet on the left-hand side of the second shelf up.

After that he comes back to the table, grabs up mama’s half-drunk teeny sized can of black soda, grandma’s just-opened can of white soda, and places them gently on the counter next to the sink.

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After pausing a moment to regard their placement, he rearranges the cans so that each faces exactly front and are perfectly next to one another.

“Oompa Oompa?” he asks next, and I start his now-favorite movie, Willie Wonka and the Chocolate Factory, on the DVD player.  Jonah first arranges and straightens the 3 remote controls on top of the TV, then reaches both hands out to similarly straighten the VCR and cable box.

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Andy brings him 2 plates, one with cut-up banana on it and the other with cheese and chives cracker.  Jonah happily sits on the floor next to the coffee table as the movie, at whatever point we stopped it before, starts to play.  My eyes fill with tears.  They don’t fall, but everything blurs as, for a few minutes, he is just a boy having a snack, watching a cool movie.

For a while he got up on the couch and I asked him if I could scratch his back, and he said yes in his cute small voice.  I asked if he wanted me to scratch over or under his shirt.  Under shirt? he requested, so gently I scratched his back.  Kisses? I asked him.  More kiss, he replied, which also means “yes, kisses.”  And so I kissed his head and his cheek and his foot, and we laughed together, and I thought about all the words and concepts he is learning, and how incredibly amazing it all feels.

Yes, last week when he was standing on the bed and I leaned in for a kiss, he leaned in too – and smacked me in the face.  But I’ll take it, if it means the pendulum is somehow holding itself in a mostly good space.

Some more pictures:

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Jonah and his daddy, who loves him very very much.

All good, this time of revelation.

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On Tuesday morning, I set out with something like hope to meet Jonah and the two caregivers who’d driven him up for his glaucoma doctor appointment.  Jonah hadn’t seen one of the caregivers, J, in a long time.  J and Jonah have a special bond, and I’m sure Jonah was thrilled when he first saw him.  I love watching them together: a big brother and his little pal.

Jonah was so good while we waited in the hall.  He amused himself, turning circles, humming, making random noises, occasionally approaching J or P or me to touch us lightly or lean in for a hug.   Of course I’d come prepared with bubbles, octopus, peanut butter crackers, strawberry seltzer, and peppermint tic-tacs.  He was as quiet as an NT kid.  Probably quieter, for a few minutes anyway.

He even sat down nicely in the waiting room chair (for a few minutes)   :-)

He even sat down nicely in the waiting room chair for a while

…shortly thereafter deciding to chillax into “punk ass” pose:

I love the punk-ass pose...almost always accompanied by the thumb-suck, making it even funnier

I love the punk-ass pose…almost always accompanied by the thumb-suck, making it even funnier

Jonah was great for the eye test too, but the glaucoma doctor seemed to underestimate and overestimate my son’s cognitive abilities.  What I mean by that is:

Doc wants to assess Jonah’s left eye only so he covers the right eye and puts the Big-Ass-E up on the screen.  Boo probably can’t see a thing but he’s also no dummy.  He’s been to dozens of eye appointments, and he knows damn well the first letter they ask him to read is always E.  Sure enough, when the doc puts that giant E on the screen and asks Jonah what letter he sees, “E,” Jonah announces confidently.  I tell the doc that Jonah knows the first letter is always E.  So the doc shows him the second line:  A  L  O.

Not missing a beat, Jonah tells him “E F G.”  He has no idea, but has E F G is the standard answer he uses at such times.

The doc sighs and shuffles through some drawers; he finds a card with the letter E on it, and I wonder how this will help since we’ve already determined Jonah will answer “E” to just about anything asked of him.  Jonah watches as the doc holds the card up and then turns it to the right, so now it looks like a boxy M.

boxy m

“Jonah, which way is the E pointing?”   Jonah says nothing, so the doc’s next idea is to ask the same question using more difficult terminology.

“Jonah, which way are the E’s tines pointing – up, down, right, or left?’

E F G,” says Jonah.

“The tines,” the doc tries again.  He may ask well ask Jonah for the square root of 3,481*.

“I wish I had my alphabet cards,” I say.  This is a good glaucoma doctor, awards all over his wall, but he never seems to remember (or doesn’t understand) Boo — and by now he’s seen him in the office probably a dozen times.  Maybe it’s just that I’m too close to it all, and to Jonah — whose language, largely unspoken, I understand.

Finally, the doc holds up five fingers and asks Jonah how many.  When Jonah answers “two,” I think we all know there isn’t much sight in the left eye. 

The good news, though, is that the doc told us Jonah could have some of his sight restored after the blood cell clouding dissipates.  It just remains to be seen (no pun intended).  He was concerned, though, about a surprisingly low pressure read in the left eye.   He wanted Jonah to get an ultrasound at the other (retina) doc next door, right away.  He called to tell them we were coming — and we braced ourselves for the dire possibilities inherent in this plan.

But Jonah surprised us, happily amenable to “doctor number two.”

He actually sat patiently through two eye exams with two different doctors within 40 minutes of one another:

doctor number one

doctor number one
doctor number two

doctor number two

After the ultrasound, doctor number two said he liked what he saw of Jonah’s eye, and that his right eye looks just fine.

It was a wonderful day.  I suppose it’s a little strange that some of my best and happiest interactions with my son are at doctor appointments, but then both the good and bad can happen anywhere – so perhaps it isn’t strange at all.

Yesterday (in the ongoing heat and humidity that will surely mark this summer of 2013) my mom and I drove down to another wonderful day with Boo.

Good day, sir!

Good day, sir!

While Jonah took his beloved bath, we (meaning mostly me) recited his favorite scene near the tail-end of the 1971 film “Willy Wonka and the Chocolate Factory,” eliciting great smiles and giggling  from Boo.  GOOD DAY, SIR!   I love to hear him laugh.

There was only one incident during car ride to transfer station and I managed to capture it in photos from beginning to end.  No one was harmed during this incident, which was mighty nice.

Still relatively happy

Still relatively happy

We think he didn't like the volume of the song (probably not loud enough for his taste) or the commercial break, or his dislike of the song itself, though it remained a mystery why it made him so desperately upset and sad.

We think he didn’t like the volume of the song (probably not loud enough for his taste) or the commercial break, or his dislike of the song itself, though it remained a mystery why it made him so desperately upset and sad.

Andy's pulling over now.  Jonah is almost on the floor, kicking his legs up the front and beginning to cry.

Andy’s pulling over now. Jonah is almost on the floor, kicking his legs up into the front seat and beginning to cry.

After being bear-hugged and comforted by daddy, Jonah resumes his punk-ass pose.

After being bear-hugged and comforted by daddy, Jonah resumes a punk-ass pose.

This time when mom and I drove back to Albany it was with a light heart, and to my lovely musical selection: Guster Live Acoustic.

He has had a good many days in a row, sweet Boo.  And he gifted me with many hugs and kisses on Saturday, to last me ’til I see him next, on Wednesday, at the same two doctors in a row (this time planned that way).

I am grateful indeed.  Thanks especially to J and P, who as always were a huge help and support.

How I do love my amazing little boy.

* 59

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Sorry for the Buddhist-poem-flake-out.  It’s all part of the necessary path, I guess.

“There’s no earthly way of knowing… which direction we are going…” ~ Willie Wonka

Not only don’t I know which direction we are going, but I don’t even know now where I am.  I sleep as early and as much as possible – greedily falling into the cushion-y darkness where everything turns OFF for long, glorious hours.  I wake confused, then teary, and I gulp down the pills that help me through the day.  I’m just not hungry lately either.  It’s as if I got to an anxiety/fear point so high I smashed through its glass roof (Willie Wonka style, speaking of the great confectioner) and now I’m flying around grasping at different ideas, completely ungrounded, definitely dazed, and evidently, flaking out as well.

All these thoughts.  I decided I ‘m going to learn Spanish.  I want to visit Mansfield, MO, home of my beloved heroine, Laura Ingalls Wilder.  I’m going to read books even as an English major I’d never dared attempt:  Les Miserable and War and Peace.  I’ll learn to play guitar.  Write a novel, maybe even out of this blog.  Visit my relatives, send them all care packages.  Volunteer to read to kids at the library.  Walk dogs at the humane society.  Do yoga.  Learn to paint.  Anything, everything.  Something so I’m not nobody doing nothing.

Sometimes I have these grandiose plans to change the world, at least my world and the people in and around it, making positive deposits in the great big bank of karma.

But still I play out scenarios of the day we drop off our son, over and over, with different circumstances and outcomes each time…except he is always gone at the end.  In the scenarios we always have to go, we always drive away.  He is always, always gone, and he will be gone, and he will be gone soon.  No wonder I am meditating on impermanence.  I can’t really comprehend any of it.

Andy and I met with a mediator and we have workbooks to fill in, just like we did at the church when we were planning to marry.  Everything is cyclic.  We will wait until Jonah is at his new school and then we will re-convene, workbooks completed, bringing yet another thing to its conclusion.

My friend H (bless her) invited M and me and Jonah to her pool again tomorrow, thank you thank you thank you little H.  To her it may not be much but to us it is everything.  Yesterday M and I had to drive Jonah around the entire time we had him; there was simply nowhere we could go.  It poured rain and Jonah didn’t want music.  I got him singing at one point but then he started his repetitive requesting-phase:

Wannatakeabath?  Wannatakeabath?  Wannatakeabath? Bye Bye M.  Wannatakeabath?  Daddy?  Wannatakeabath? Bye Bye M.  Daddy?  Daddy?  Grandma?  Swim-pool? Swim-pool? Wannatakeabath? Wannatakeabath? Wannatakeabath? Wannatakeabath? (Insert BLOOD-CURDLING SCREAM instantly followed by giggling laughter).  WannaseeJack?  WannaseeJack?

And I curse myself for gritting my teeth and wanting to shout SHUT UP because soon enough I’ll wish I could hear his little voice, no matter what it was saying or shouting or screaming.

Oh, what a weird place in time & space this is.

“For the rowers keep on rowing,
And they’re certainly not showing
Any signs that they are slowing…

~Willie Wonka

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