Posts Tagged ‘Rainman’

freude schöner götterfunken = joy, beautiful spark of the gods

Oh, the joy of an incredible day with my Boo.  And I learned a thing or two.  I’ll commence in telling you (says Dr. Seuss).

My mother can be exceptionally discerning.  She started to notice that Jonah, when we first pick him up, greets her by declaring what there is for lunch.  I’m not saying Jonah is psychic; it’s not like there are 100 items on the menu.  But it is interesting nonetheless because she makes tuna sandwiches one week and turkey the next, in a routine from which she does not vary.

Still, when she declared to me yesterday that Jonah tells her the right kind of sandwich on the right week, I doubted her.  “You watch,” she said.  “Today he’ll say tuna.”   And sure enough, when we picked him up yesterday, the first words out of his mouth were “tune-fish samwich?”

I realize how this may not seem like an accomplishment worth mentioning but I thought it was incredibly cool.  He remembers things very well.  He knows where he is in the world at all times, even when you think he’s not paying any attention. He’s no Rainman, but he does have a few strange, fascinating “splinter skills.”  (There are reports of individuals with an incongruous repertoire of abilities: apparently general cognitive impairment coupled with outstanding performance in specific areas, such as music, drawing, calculation, and memory).

Two or so years ago he started to utter the alphabet backwards, fast.   Who can do that?

And I’m not sure his swimming abilities are a splinter skill too but nature (God?) made him completely at home in (and under) the water, happily Pisces, a true fish who is unfortunately out of water most of the time.  If I had the money I’d buy us a private tropical place and hire a team of caregivers and teachers, and we’d swim every single day, with dolphins and manta ray, and he could run up and down the sands and jetties as fast as his long, lithe legs could carry him.  I have to get that child to the beach again.  I need to find a way.

Now I’m rambling, unfocused.

Yesterday.  On the ride from Anderson to Andy’s apartment, Jonah wanted me to kiss his hand.  He proffered said royal hand to me from the backseat.  Kiss hand?

The Godfather would like his hand kissed.

The Godfather would like his hand kissed.

Yes, Boo, of course kiss hand.  I kissed each finger and then pretended to suck his thumb, eliciting much joy from Boo.

I love the indescribable color of his beautiful, shaggy head of hair in the sunshine...

I love the indescribable color of his beautiful, shaggy head of hair in the sunshine…

He still has the chafing around his mouth.  I will call the nurse tomorrow.  We think it’s from the Methotrexate and the Humira, or both.  Side effects and more medicine to treat the side effects.  Sometimes I want to take him off every single med and see what happens.  Titrating him, slowly.  I don’t know if I am correct in this feeling.  It isn’t mother-instinct.  Just a question.
Look at all that hair on the top of his head.  The back is relatively short and the overall result is a ragamuffin look I really don’t mind.  It’s my mom who would like to dictate the length of his hair, not Andy and me. I think they should color it a deep blue.  He’d LOVE it.   Just no mullet, please.

I don’t know why I didn’t color my own hair a deep blue when I was younger.  I guess because I’ve always had a job, and since I graduated college in the early 90s they’ve frowned upon blue hair unless you work at a head shop.

If I ever don’t have a job I’m going to color my hair deep blue for a while.

I think he looks angelic here, with the sun all on & over him

I think he looks angelic here, with sun all over him

I really don’t care if he has splinter skills or not, of course.  I just think he is a fascinating manifestation of a boy, and on top of that I get to be his mother, albeit imperfectly and frightened as hell at every turn.  And yesterday:  more kiss?  more kiss?  At the apartment and on car ride to the transfer station.  More kiss?  More kiss?   Beautiful words.  Treasured words.  Joy.

Joy, beautiful spark of the Gods.  freude schöner götterfunken – from the Ode to Joy by Ludwig von Beethoven (Gina’s favorite composer).  They played the Ode to Joy as Andy and I exited the church with heartsmiles on our wedding day, August 19, 2000. — I’d sung the Ode to Joy in college with the Catskill Symphony Orchestra.  On that day – my wedding day – I felt joy so strong I almost couldn’t take it.  The day was a perfect sunny 70 degrees, as if the weather were celebrating with us.  There is still celebration in it, no matter how the subsequent years have unfolded.  You can’t take that kind of joy away, not ever.

I live for it.  Like an open window from which you can glimpse heaven itself.  It’s in the uncontrollable laughter, the uninhibited play, the favorite books, the embrace of a partner, the eyes of your child, the song that lifts you, the friend who shares, the pets who love unconditionally, the innocence that brings tears to your eyes, the purity of grace which cannot be denied.

My favorite love poem.

XVII (I do not love you…)
by Pablo Neruda

I do not love you as if you were salt-rose, or topaz,
or the arrow of carnations the fire shoots off.
I love you as certain dark things are to be loved,
in secret, between the shadow and the soul.

I love you as the plant that never blooms
but carries in itself the light of hidden flowers;
thanks to your love a certain solid fragrance,
risen from the earth, lives darkly in my body.

I love you without knowing how, or when, or from where.
I love you straightforwardly, without complexities or pride;
so I love you because I know no other way

than this: where I does not exist, nor you,
so close that your hand on my chest is my hand,
so close that your eyes close as I fall asleep.

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It is Jonah Russell’s 10th birthday today, and time itself must be bending and twisting and teasing me, because I just can’t wrap my mind around that.  I’m off work from noon today until next week.  I was going to drive down to see Jonah after I got off work, but I’m recovering from an ugly stomach bug (I didn’t go to work at all Monday) and don’t want to bring it to him (if he didn’t bring it to me). Plus, I don’t want to upset his special day with an unexpected visit – he won’t comprehend why I’m there.  They’ll have a pizza and cake party for him tonight — and he even gets a present or two.

We had our own birthday party for him at grandma’s house on Saturday; Andy drove him up and grandma had gotten him balloons, all his favorite foods, and cake with chocolate frosting.

Tomorrow morning M and I are flying to Denver, Colorado to see Guster play with the Colorado Symphony Orchestra.  Then back home for two more acoustic shows before (sob) the tour is over.  There is a reason my son learned to sing one of their most complicated songs.  If you click on –> Keep it Together you can see a You Tube video of him singing it, and in pretty good tune & rhythm, when he was 7 — at a time when his verbal language consisted entirely of two-word phrases. (Sorry to long-time readers who’ve heard me say this a dozen or so times).  I guess I brainwashed the child; he was certainly unresistant.  And so together we live happily ever after in Gusterland.

I just sent their album Keep It Together, in fact, to the awesome nursing staff who drive him to doctor appointments.  It was their idea; they said they’d play it in the van for him.  I’m so grateful for the kindness of those who have my son in their care.  There is no better gift to me than to nurture, teach, play with, care for, and maybe even love my little Boo.


At that moment the nurse at his school called to tell me Jonah required another two-person takedown today, after it happening twice yesterday.  I called his glaucoma doc yesterday to ask if the new meds he’d given him (eye drops) could cause pain or increase aggression but they told me no.

I don’t know if I believe this.

I’m going to ask a good doc I know, though, and look into it some.  I don’t want my boy to be in pain, or feeling this compulsion to aggress anymore.

What is it, bunny?  What can I do to make this world softer, better, more tolerable for you?

Sometimes I get mad.  It’s like that scene from Rainman where Raymond’s younger brother Charlie, played by Tom Cruise, loses it while driving in the desert and Raymond insists on purchasing underwear at a K-Mart 5 or 6 states away.  Charlie screeches the car to a halt, throws himself out onto the empty road, and paces wildly, ranting to the desert before returning to his brother, screaming, “You know what I think, Ray? I think this autism is a bunch of shit!  Because you can’t tell me that you’re not in there somewhere!”

It’s the whole theme of the movie, and sometimes the theme of the frustration I feel when I can’t communicate with Jonah the way I wish I could.  Our bright, amazing, incredible little boy has such violent aggressions – and now juvenile arthritis and glaucoma to boot.  It ain’t fair.  He’s so brave.

Despite everything, little Boo, you are ten today — and I love you more than the earth and sky.

Baby Jonah, 2002

Happy Birthday, Sweetheart…

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Tuesday, two people from Jonah’s school drove him up to his glaucoma appointment, and I met them there.  This was his first appointment at a glaucoma doc since they determined he had it.  We knew he had a good chance of getting glaucoma.  In February of 2010 they operated on his left eye, placing a Reticert implant inside (which constantly emits a controlled dosage of a steroid, locally) and they replaced the lens of his eye with a fake one.  Too much pressure in his eye.  Glaucoma was likely, eventually, they said.

In photos you can see his left and right eyes look different.

And so now glaucoma.  At the appointment I was given a brochure called Understanding and Living With Glaucoma.  Its clear, clinical language was interrupted in just one place:  the first sentence (under the heading What is Glaucoma?), which somehow managed to sound both dismal and anthropomorphic:

Glaucoma is an eye disease that gradually steals your vision.

I closed the brochure.  Not now.

During the whole time, Jonah was the bravest little boy ever.  I’m so very proud of him.  The doc was almost an hour late, so we had to entertain him, and the two people who drove him up from school turned out to be incredibly awesome, operating like a well oiled machine.  I don’t mean to say they were in any way cold, either.  E was a short giant of a woman.  She knew her shit.  She was friendly and efficient, and perceived exactly how to handle everyone, from me to the doc to the receptionist.   E put everyone at ease, and kept everything at Def-Con 1.  A compassionate magician of a woman.

She understands the system and works well within it, but she also demands respect and damn well gets it.   I loved her.

With her was J, a muscular young-looking man with a strong-yet-softie look about him.  He and Jonah were like brothers.  (I kept thinking of Rainman:  V-E-R-N.  My main man Vern).  J is definitely Jonah’s main man.  He knew how to re-direct Jonah and did so with a deceptively casual brilliance.  He’d look over at Jonah and say give me the punch and they’d bump fists, Jonah giggling.  J too was friendly and comforting; when I sang with Jonah he said “you got pipes” – and we chatted easily.  He told me he was an amateur boxer, and he was about 10 years older than I’d pegged him for – all the while engaging with Jonah as necessary and wise.  I loved him.

I tell you these people were awesome.  I was so grateful I was nearly in tears.  When other people are in charge of your child, people who are not relatives or even friends, you want to kneel before them as you would royalty, for they have the most important job in the world, to parents like Andy and me.  They care for our little boy.  He will be ten on March 7th,  sharing a birthday with, of all people, Tammy Fay Baker.

Wait!  Wow.  I just searched for “Who was born on March 7th” out of curiosity, and found out Elizabeth Moon shares his birthday!  She wrote one of my favorite books, The Speed of Dark– set slightly in the future, about a man who has high-functioning autism and must decide whether or not to undergo a new procedure to make him normal.  The book is where I got the title for this blog, Normal is a Dryer Setting.  In The Speed of Dark, one character with autism says it during a conversation.  I love that.  Who else was born on March 7th?  Ravel, the composer.  Wanda Sykes, the comedienne.  And even Pam Carter – Wonder Woman’s sister.

But I digress.

Doc was good.  A little cool and clinical, but 99% of doctors are, after all.  (Not you, Jacob.  Or you, Neil. You’re the 1%.  HA!)  Here’s where it gets weird, though.  With both E and J holding Jonah, the doc put numbing drops into Jonah’s eyes (Jonah’s used to eye drops so that wasn’t the big deal you’d think it might be) and then looked through his fancy machine and said “this suture is broken.” He turned to the nurse, asked her for an instrument, and proceeded to (I have no idea how) remove the broken suture from the back of my son’s eye.  Um, okay.  Wow.

Turns out it had been scratching his retina, the suture, and as a result the retina was red and irritated.  “How long do you think it’s been broken?” I asked.  “Months,” he replied coolly.  “At least.”  I looked at the suture he’d set on a tray.  “Could he have been in pain all this time?” I asked.  He paused.  “Yes,” he answered.

But Jonah’s to the point where he can say if something hurts, I was thinking.  After his eye operation, he cried in misery and very clearly stated “eye hurts!”  I don’t understand and I don’t know what to think.

But in a few weeks they’re going to put him under anesthesia so two specialists can take a closer look at his retina.

Then the doctor set me up with the name of a rheumatologist who sees children – something we were told a year ago did not exist in this area…which is why we traveled to Boston Children’s Hospital to get him diagnosed with juvenile arthritis, something all the doctors here suspected he had.  Now, finally, he can be hooked up with a rheumatologist.

There is more but I am tired.  It has been a very exciting day, and I’ll tell you all more about that later.  I have to go watch Tora Tora Tora; my dad said it was the most historically accurate portrayal of the events leading to the attack on Pearl Harbor, and I’m interested in that.

Good night all.  Good night, little Boo.  Sweet dreams.  If there’s any mistakes in this I’ll come back and fix ’em tomorrow.  I don’t have it in me to edit.

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Doctor: Ray, do you want to stay and live with your brother Charlie?

Raymond: Yeah.

Doctor: Or do you want to go back to Walbrook?

Raymond: Yeah.

Doctor: Which is it? Go back to Walbrook or stay with Charlie Babbitt?

Raymond: Go back to Walbrook, stay with Charlie Babbitt.  Stay with Charlie Babbitt, go back to Walbrook.

~ Rainman, 1988

– – –

“Jonah, do you want a donut?”  I ask him this morning on the way to the train.

“Donut?”  he repeats.  “Okay, boo, mama’ll get you a donut,” I tell him.

I come out of Stewart’s with a donut and hand it to him.  Before he’s even taken the first bite, he’s on to the next request.  “Grandma?”

“Grandma’s closed,” I answer.  I know my mom’s working today so that means she won’t be open for business until at least 3:30 this afternoon.  We continue on to the train tracks just as a train is going by, so it’s an instant-gratification experience for Jonah.

“Eddie?”  comes the next request.  Eddie is our office cat where I work, and sometimes I’ll take Jonah over on rainy days to feed Eddie a treat or throw a jingle-ball down the stairs to him a few dozen times.  The last place I want to be on a lovely weekend morning, however, is my workplace, so I shoot down this request as well.  “Eddie’s closed,” I say in what I hope passes for a mournful tone.  “Let’s go for a little car ride.”

“Window?”  he asks.  I give him the go-ahead and he rolls his window down all the way.  It’s kind of cold, being a mid-September morning — maybe 55 degrees.  But Jonah is impervious to cold in a way I neither share nor understand, so I turn on my heated seat and crank up the blower heat too.

My best friend Gina loved rolling her window all the way down, in any weather, and I find myself thinking of her…remembering our road trips, all the car’s vents directed toward me, blowing hot as she enjoyed the chilly wind.  She died 8 years ago but I can almost hear her laughing at me, riding around Voorheesville early Sunday morning to watch a train go by, for God’s sake…blasting heat and begrudgingly allowing Jonah to roll his window down.  I like the wind too, I imagine her whispering in his ear.

Then:  “This way?!”  Jonah half-requests and half-insists.  He has not pointed in any direction so I don’t know which way he wants to go.  I glance backward and ask him again.  “Straight?”  I guess.  Straight will take us along our normal loop up through Altamont and back to the train tracks in Voorheesville. “Straight,” he repeats (while pointing to the left).  But I’m not looking at him, so I drive forward, operating under the foolish assumption that Jonah knows what straight means.  “This way!”  he shouts, agitated now.  “This way!”

I pull the car over so I can see where he’s pointing, and then turn the car around to pass back over near the train tracks.

“Train?”  he asks.  “That way?!”

“You want to stay here and wait for another train?”  I ask.  I am very nearly ready to endure whatever tantrum is brewing rather than attempt to further unravel his fickle directional desires.  “Stay he-ah?”  Jonah echoes.  So we stay.

I lean back in my seat.

I close my eyes.

After a minute or two, from the backseat:  “That way?!”

I can’t help but laugh.  “Jonah,” I ask him, quoting Rainman, “do you want to stay with your brother Charlie or go back to Walbrook?”

“Stay he-ah,” he answers definitively.   Not five minutes later another train comes by, and Jonah is delighted.

Sometimes I think he’s got it all figured out and just likes to mess with my head.

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Charlie Babbitt: Does Raymond know how much money he’s inherited?

Dr. Bruner: No, he doesn’t understand the concept of money.

Charlie Babbitt: He doesn’t understand the concept of money?  He just inherited three million dollars and he doesn’t understand the concept of money? Wow, good work, Dad. I’m getting fucking poetic here.

~ Rainman, 1988

– – –

Like Rainman, Jonah doesn’t understand the concept of money.

But boy does he love a good handful of change.  It’s one of his favorite playthings.

“Moneycoin?”  he pleads, standing on our bed and trying to reach over to the dresser to retrieve whatever assorted pennies and quarters have accumulated on top.

“Moneycoin is…open for business!”  I shout, giving him a handful of assorted coinage.  He drops his precious moneycoin in a small Tupperware container and shakes it, then gleefully tosses the whole works into the air; like game show prize money it rains down on us.

Jonah rolls moneycoin along the wooden floor in the hallway.  He spins moneycoin on the living room coffee table.  He clutches moneycoin greedily in tight fists: a miser gone berserk.

At any given time in our house you could probably collect twenty dollars of moneycoin from behind furniture, between couch cushions, and under beds.

Here moneycoin is ubiquitous, much to Jonah’s supreme satisfaction!

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