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So I came across a news story on Yahoo about a special needs kid getting his high school diploma.  Proud mama is grinning, and the headline reads Child With Severe Autism Beats Odds To Graduate.

Severe autism my ass.  I’ll show ’em severe autism.

I guess we’ll need new terms to describe people like Jonah.  Perhaps we could use adjectives from bags of Doritos:  Extreme autism.  Ultimate autism.

Or natural disasters:  Tragic autism. Catastrophic autism.  Lately it’s felt pretty catastrophic.  Jonah’s gotten worse and worse, with a few glances of happy, like this one on Christmas Day –

Christmas Day 2015

One tick of grandma’s kitchen clock – and even as he smiles, you can see him reaching up to pull my hands off his body, ready to take off running-humming-spinning.  At the next tick of the clock he’ll turn on you snakestrike quick, hands snatching hunks of hair, scratching skin, head butting, legs kicking, all the while strangely quiet as if silenced by a fear of his own violence.  (When I visit him, I’m always half-blind; I don’t dare wear my glasses and I can’t wear contacts).

Thorazine didn’t work, though they tried raising the dosages steadily.  And now the Anderson Center for Autism has reported to the Albany School District that Jonah is not meeting his educational goals (which include behavioral benchmarks).

In other words, you’ve got to find somewhere else for this kid. 

Andy and I knew this might be happening soon.  They’d hinted at it before.  The Anderson Center reassures us, at least, that Jonah will not be sent packing on the next train to nowhere.  They’ll continue to teach, house, and help him until we find a more suitable placement.  In fact, one of his behavioral specialists tells me they’re planning to set up an alternative learning environment for Boo, where he will be the only student.  It’s probably almost necessary, in fact, given Jonah’s recent attacking.

I don’t even want to consider what options there were for someone like Jonah a hundred years ago.  I’m grateful it’s 2016, and I’m grateful for Anderson’s staff, who have worked so hard to help.

It’s just that I always considered the decision to place Jonah in residential care as the edge of the cliff.  You do as much as you know how to do – call on every resource, employ every method you can, persist in every hope – until you face this wall of reality and on the other side your child must eat-sleep-learn-breathe-live away from you.  As in, not in your home at all.

It was the end of a geographical era in our lives.  It was an atom bomb.  A record-breaking earthquake.

But not really.  Turns out it’s just another chapter in a book about a kid so behaviorally affected that even the residential school we found for him couldn’t handle him.

An e-mail from this past Wednesday:  This email is to notify you that Jonah was in a physical intervention on 1/20/16 at 10:30am, 10:53am, 12:30pm and 1:40pm.  They’d called an ambulance to take him to the hospital the day before, because the aggressions were so frequent.  The hospital isn’t the place for Jonah when this happens; Andy and I know it.  But what is the place when this happens?  Where can he go?

If Jonah gets better, he will undoubtedly stay at Anderson, of course.  The cogs in this machine turn slowly, and if we can just get a handle on this, Jonah’s life need not be disrupted.

Urgency + desperation + helplessness = how Andy and I feel.  We talk about it carefully, if at all.  Not a lot needs to be said.   “Where Jonah goes, I will go,” Andy tells me.   I believe him; he moved to the Rhinebeck area when Jonah did, more than four years ago.  He has a life there now – a job and a girlfriend he loves.  But we take things one day at a time.  We try not to put carts before horses.

Now Jonah has been completely weaned off Thorazine. Beginning tomorrow, he’ll start taking Clozaril – what seems to be a “last-resort” drug, usually used to treat very severe schizophrenia.  And nobody even tried to sugarcoat the situation.  This drug is risky.  The information I look up is scary.

From drugs.com:  Clozaril is available only from a certified pharmacy under a special program. You must be registered in the program and agree to undergo frequent blood tests.  Jonah’s nurse explained how everything is well monitored – in fact they can only get 7 days of the medication at a time.  Andy and I signed a form, as we always do with a medication change, but this prescription also had to go before the board of health as well.

I never thought I’d be okay with a drug that has so many warnings.

On second thought, I don’t think “okay with it” is what I am about the drug, or about any of this.  But Jonah’s doctor said she’d used it on 10 patients and 9 of them showed significant, life-altering improvement.  It gives us all hope, somehow, still.

The cycle of Hope and Despair turns stubbornly.  In the midst of despair, you think you’ll never entertain hope again.  Hope has let us down, after all.  It’s let us down every fucking time.  Despair is painful as hell but at least there’s no one holding a football to yank it away at the last second.

peanuts-lucy-charlie-brown-football-2.jpg

What a deliverance of hope it would be if Clozaril was the answer!  I allow myself to imagine it this day for a tiny piece of time – a Jonah freed from aggression, from anger, from violence.  My happy boy, our sweet Boo, the baby-est angel.

If I indulge in the fantasy, I come running at the football again, trusting Hope to hold it in place.  What does it mean to come running again and again, knowing the football will be yanked every time?  People have philosophized on this.

I don’t know.  I just don’t want Jonah to hurt anymore.

IMG_20160117_114931767_TOP

I took this photo last week during a car ride, when Andy pulled over and we got out to avoid being kicked.  These pull-overs happen frequently; Jonah’s good at scrunching way down in his car harness to get good leg extension and reach us in the front seat.

You can see Andy’s reflection in the window.  Juxtaposed with Jonah’s expression, I think it paints a poignant picture.

Today was better, at least during our visit.  Two direct caregivers walked Jonah out to Andy’s car to avoid the recent attack-mama-or-daddy-as-soon-as-they-walk-in-the-residence pattern.  One of them told me Jonah’d had a severe aggression about an hour prior to our arriving, so we set forth with trepidation…but despite much kicking and multiple pull-overs, Jonah was better for us than he has been.

In the apartment, I even got him to sing a little as he traced a large figure eight in and out of Andy’s bedroom into the living area.  We sang I’ll Be Working on the Railroad, Bye Bye Blackbird, and more than a few Guster songs for good measure.  First I sang a line, then I motioned at Jonah, who easily picked up the melody, lyrics, and rhythm.

I thanked God for it.

Evidently they’re expecting Jonah to respond to Clozaril within two weeks, if he’s going to respond at all.  Tomorrow’s the first dose.

Hell, I may just run at that football one more time.

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This has been an extraordinarily fantastic day.  My blog is usually so filled with frustration, sadness and despair – but not today.

First, it is a warm, slightly-breezy, summer-calm, bright, quiet, Paul-Newman-eyes-sky June day.

Now take a deep breath for this wondrously lengthy run-on sentence:

Since I no longer work in a building dressed in office clothes in a windowless area where I am isolated at a facing-a-corner desk, under pressure must-make-money selling advertising over the phone, BUT, rather, am now employed as a writer – typing tip tap tip in my hippie skirts and comfy t-shirts, from home, on the couch, for a charity I love, with the TV tuned to “light classical” 1270, all windows open, house clean, food & drink for whenever I feel like eating, Almanzo-kitty and Jack-dog at my side or in the yard, breezes and birds calling me outside where I stretch and break from work to water plants, walk barefoot to the park, garden a little…whatever I want so long as the work gets done, I am grateful because this alone makes every day like a fantasy-dream come true.

I can’t really express how I feel the need to pinch myself each day.  I wake when I want and I don’t have to go anywhere at all.  The work I do feels like painting a picture or making nature art by a stream.  Creation.  It’s a joy for me to write.  And I am unbelievably blessed.

What a deliverance. 

As the shock begins to wear off I am finding myself breathing slower, feeling more relaxed, smiling inside and out.  I sit in meditation easily.  My head and heart are clearer.  I’ve befriended new neighbors and gotten closer to old ones, and when I do not have writing work, I love to spread the word about Modest Needs, the foundation for which I am now director of communications.

But that’s just the groundwork for this awesome day.

Jonah’s caregivers, P and N, drove him up to this “second chance eye doc visit” (after the failed appointment-cut-short exactly a week ago today).  I met them at the van and Jonah came bounding out, smiling wide and with a fresh new hair cut.  We walked around outside and in the lobby for a good 20 minutes before they called P’s cell to tell us to come up and into an examining room.  Usually I underscore every last detail of all this, but today I will simply tell you Jonah was an angel.  A “normal” kid could not possibly have been more cooperative or have amused him/herself any better.  After waiting those 20 minutes downstairs, we waited again from 10:30am (when they called us in to a room) until 11:30am (when the doctor finally came in) and I tell you he was the picture of patience.

He walked in tight circles and we played “high five” and sang songs – everything from “I’ve Been Working on the Railroad” to Guster’s “Keep it Together” to “B-I-N-G-O” to “Bye Bye Blackbird.”  I gave him a green octopus and many white tic-tacs.  He asked for hug and more hug and kiss eye and more kiss, over and over, his repetition sweet music.  I held him tight and kissed his eye, the top of his head, his shoulder…we made a game of it — we made a game of everything — he was happy and giggling, asking for donut? even as I made up a song about him asking for donut.  N and P are incredibly cool and we were able to talk and laugh among ourselves and along with Jonah.  

Donut?  Donut? he asked several dozen times, lest we forget.  He knows the drill: Number one: doctor.  Number two: donut.  Donut?  Donut?  “Yes, Boo, of course!”

He never fell apart, and we checked out and walked back downstairs.  I hugged P and N goodbye before kissing Boo soundly and sending him off to get his beloved donut.

I’m not going to ruin this post with details about Boo’s eye.  Later.  For now, just pictures.  I took several – here are some good ones:

First I opened the door of the van and gave him green octopus

First I opened the door of the van and gave him green octopus

happy boy, waiting in the lobby

Happy boy, waiting in the lobby

walking into the eye doc office

Walking into the eye doc office

...and being a really good boy for his ultrasound!     ...and being a really good boy for his ultrasound!

…and being a really good boy for his ultrasound!

It was damn near a miracle.

Today I pray one of my two main prayers (the other is please): 

Thank you.  Thank you.  Thank you!!!

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“Likely as not, the child you can do the least with will do the most to make you proud.”

Mignon McLaughlin

It was the first thing Boo asked for when I met him at the car; Andy had just driven up to the eye doctor’s office and I was there, yesterday, waiting for them.  “Octopus?”  he said when he saw me, reaching out his hand.  “Hi, Boo.  I’m sorry.  Mama forgot the octopus,” I answered, cursing myself.  I’ve bought him so many octopi and he destroys or loses them all, or they get so grimy and un-washable we have to toss them away.  But next appointment I’ll be sure to have one at hand.

Jonah and his "octopus."

An older picture of Jonah and his “octopus.”

This is a picture of what Jonah calls “octopus.”  Any kind of those squishy rubbery toys with nub or finger-like appendages will fit the bill – even those that look like caterpillars or balls.  To Jonah they are all octopus.

He was a good boy in the car ride up, and a good boy at the eye doc office, even though we had to wait a good while in a small room.

Daddy played 'push and pull' Jonah's legs while we waited.

Daddy played ‘push and pull’ Jonah’s legs while we waited.

After a while, Jonah started turning his circles in the small area, becoming less patient.

You can see where we've cut the hair along the top of his head to keep it away from his eye shield.   What he needs is a buzz cut for the summer.

You can see where we’ve cut the hair along the top of his head to keep it away from his eye shield. What he needs is a buzz cut for the summer.

We sang “I’ve been working on the railroad” for a while, trading lines, but then he stopped and said “no,” clearly done with that entertainment.  Finally, I thought the taking of the pictures themselves might occupy him. Sometimes it makes him mad, so usually when I take photos I do so surreptitiously.  But this day he enjoyed it.  I took one of him with his daddy and then daddy took one of him with me:

Coming in for a hug with daddy.

Coming in for a hug with daddy.

Sitting on mama's lap

Sitting on mama’s lap

Eventually Andy went into the hallway to tell someone that Jonah was fixing to have a tantrum (though he really was still being good) — we knew the longer he was left in the room, the harder it would be for the doc to examine him once she arrived.  Soon afterward the doc appeared.  She had me take all the tape off his eye shield and remove it altogether; I hoped against hope we could leave it off for good this time.  But his eye still looked bloody and the pressure was too high (around 32) – both of which things, she told us, were to be expected.

She put two kinds of eye drops in his eye, one of which stings, and did an ultrasound with blue goo all over a wand against his closed eye.  All of these things would bother an adult, let alone a child of 11 with autism.  But my little trooper was so good – he patiently let her examine, shine lights, and more while Andy and I waited anxiously.

She said the ultrasound looked like things were much better, and she wanted him to have two more appointments, a week apart.

Unfortunately, we had to put the eye shield back on.  Jonah seemed resigned to this and happily gave both of us kisses when it was all over.  I needed to return home to work, but Andy brought him to see grandma, and then back to his residence, without much trouble at all.

I was so proud of my Boo.

Thank you to all of you who sent prayers and well wishes through comments, or through my facebook page, or by e-mail, or live and in person, or in your hearts.  Jonah loves you all, unconditionally.  Mama promises.

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“There is love, there is peace in this world.
So take it back; say it’s not what you thought

Grab a hold, take these melodies
with your hands, write a song to sing…
Isn’t such a bad, bad world!”

~ Guster, Bad Bad World

What a wonderful visit with Boo today.  Lately he doesn’t want grandma to come with us to transfer station (our weekly recycling destination) so my mom stays at Andy’s apartment and watches Fox News.  But just like last time, just like she said, he knew exactly what was for lunch.  You could have given me a year and I would have never figured out there was a pattern, even one as simple as every other week.  My mom even brought Jonah a surprise – potato chips and dip. 

He was in heaven.

chips n dips

“chips n dips?”

He wanted mama to help him at bath time, and it was fun to watch him splashing around all goofy and happy.  Kiss hand? was again an oft-repeated request, and we sang his new favorite song, which is actually an old favorite song my mom taught him years ago.  We sing it to the tune of “London Bridge:”

Jooooo—na Russ is Grandma’s boy, grandma’s boy, grandma’s boy!
Jooooo—na Russ is Grandma’s boy, yes oh yes he i—is…

The care workers at his house know the song, as Jonah has taught it to them.

shaggy hair kidwith his lovey grandma

shaggy hair kid
with his lovey grandma

My mother really wants them to cut his hair.  It think it’s cute all bushy and long on top, so I don’t push them to cut it. 

Sorry, ma.

Jonah, leaning into grandma

Jonah, leaning into grandma

And so it must be confessed that Jonah is a grandma’s boy.  She’ll get to see him on her birthday, which I imagine will be her favorite present.

I feel a lot of love in my life right now.  Thank you all for every time you express it toward me, or Boo, or Andy, or any of us.  I’m putting it out there, too, consciously, engaging only in emotions which carry me forward along the river running through the world, which isn’t such a bad, bad world after all.  I’m in a card-and-care package-sending-mood, and I’ve been doing things like writing letters to the people (and the bosses of the people) I encounter in the world who are awesome, who have gone above and beyond, whether they have helped me negotiate Jonah’s Medicaid system or just been really kind and friendly to me at the grocery store.  I know I’d like it if someone wrote a letter of praise to my boss about me.  I hope they all get raises.  Perchance to dream…

When the terrible things happen, like the standoff in Alabama with that 5-year-old boy in the bunker with the Vietnam vet, I try to combat the awfulness with goodness, however I can foster it.  If I don’t, I lose faith in humanity too easily, too frequently.  I become hypnotized by all the anger…by the illusion that any of us is an other to be bullied, manipulated, hated, dismissed, captured, or even killed.

Boo restores my faith in humanity.  It happens every Saturday when I walk into his house and he runs into my arms.  It happens every time he re-directs himself without an intervention…every time he asks for hug from daddy and I see the beauty in the way they embrace…every time he laughs with his silly, uninhibited, pure joy.

I got some good video of his laughter today toward the end of this 40 second video – and a lot of his turning in circles:

I love how the video starts out with my mother admonishing him for something:  That’s not funny… and then at the end how he comes right at me: more hug?

“Laughing brains are more absorbent.”
~ Alton Brown

I like to think Jonah’s brain is a laughing brain.

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Usually I know how to calm him at first, to get him used to being with me.   Singing softly.  Today I try Guster and The Beatles but he gives me a no to both of those.  I’ve Been Working on the Railroad it is.  We take turns with the lyrics, me singing a line or two, then pointing to him, he picking up tune & rhythm without breaking tempo.

It’s a complicated song as children’s sings go, but he prefers complicated songs with distinct bridges into all-new musical directions, and back again.  Keep it Together by Guster, for example.  I should turn him on to Bohemian Rhapsody or A Day in the Life.

He asks me for hug and so I slide over to him, and he wants kisses on his head, and I wrap my arms around him gladly, taking advantage of this somewhat rare physical closeness I get with my son.  More kisses? he pleads, giggling.  I kiss him all over the top of his sweet little head and then lean back to face him for a kiss on the lips.

SLAP his hand flashes out and catches my upper cheek and eye.  SMACK comes the other hand, fingers now curled to grab and pull at me, though my glasses are off and I’ve tucked my hair under a hood, so contact is minimal.

I caught his wrists after that, and we got him to the apartment okay.

I forgot my camera; this picture is from another week.

When I got home, I did laundry and dishes and raked my whole front lawn, stripping off layers of sweaters and zip-up fleeces until I was wearing just a t-shirt.  I moved in hard sweeping lifts, leaves clinging to the rake, my clothes, my gloves.  The sun and the cool and the wind-less day made for ideal raking conditions.  I felt strong: alive and focused.  I shoved the leaves down inside the bags with one leg, my foot stomping hard, compacting – my nose filled with the almost-decayed smell of fallen leaves.

I’m just a hair shy of the kind of OCD that would have me picking up stray leaves one by one from the lawn.

It felt so good to work fast and hard, to know what to do to complete a task, to literally bag it all up, and to have a different result than when I started.  Anything I can do that brings with it a logical beginning, middle, and end is good.  These blog entries are vital.  Making a difference somewhere, somehow, any way I can.  Even if it’s just clearing a scattered gathering of autumn leaves.  The leaves aren’t going to pretend to go willingly into the bag and then suddenly stage a coup and escape, attacking me with their sharp pointy stems and edges.

Work is important. Tasks are vital.

Otherwise I would go mad.  Mad madder maddest. 

Keep it together;
Can we keep it together?
We’re singing a new song now…
and everything starts today.”

~ Guster

My friend D send me a coloring book in the mail, and I’m about to go have brunch with two other wonderful friends, after which I will take a walk in the sunshine to the park. Maybe make some nature art with what’s left of the colorful leaves.  Or break out the crayons and play in my new coloring book.  Play UNO with M’s kids.  Play with my dog, pet my cat, send out some cards, maybe a package.  Perhaps I’ll even call someone I haven’t talked to in a while.

Just to pass the time away.

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“Can we miss
the storm that sucked the
whole
world
in?”  ~ Guster

So here comes the Frankenstorm, and it’s become a mini-series on television, just as every similar event becomes a Truman-Show-esque production of graphics and sound — loud bass drums pronouncing doom. Bum bum BUM!  Frankenstorm 2012.  We shall see.  I went to the store, yes, and got extra stuff.  Better safe than sorry and all that.

L and M brought Jonah up from Anderson on Friday for his retina doctor appointment.  We had the 9am appointment and still had to wait an hour.  It’s hard enough for your average kid to wait an hour, let alone a Jonah-kid.  From now on we’re just going to have to get the first appointment of the day.

I gave him PEZ, green tea,  and a stress-ball to keep him occupied.

His eye looked good, said the doc.  The pressure’s gone down and his right eye looks normal again.  And he was a very brave boy.  He even waited pretty patiently in a special large room they put us in.  The room was filled with expensive looking eye-equipment and I’m thinking are they insane?  But there were three of us there to keep him busy.  I even got him to sing “I’ve Been Working on the Railroad” and “Keep it Together” to calm him.  More often than not Jonah will hush me when I start to sing, but this time he was into it.  I love when we sing together –I will sing a line or two and then point to him, and he’ll pick it up in perfect rhythm and tune, and then I’ll take over, then we’ll sing together, etc.   It’s pretty cool.

Yesterday our visit was good – Rhinebeck was having one of its ubiquitous, cool festivals – this one for Halloween, and the streets were lined with costumed adults, kids, and dogs going business to business to get treats.  If you wonder why we didn’t take Jonah, you haven’t been reading this blog for long.  Besides, the kids at Jonah’s school have their own Halloween trick or treating thing. (Going for tongue-in-cheek, I bought Jonah a prisoner costume).

During the visit we stuck to the routine – lunch, bath, jumping on the bed, rapid-fire requests for various items of food and drink.  He got his trip to the grocery store, and was a good boy amidst the Frankenshoppers.

He was particularly lovey, especially with grandma…

And all in all it was a beautiful day with Boo.  I cried on the way down, though, idiotically and forcibly bringing forth memories of horrible times.  I have one particular memory, after Jonah was diagnosed as special needs but before the autism diagnosis…

I’d signed him up for a music-and-movement class for kids about his age (18 months or so).

The instructor has the parents all sit in a circle with our kids on our laps.  Strike one.  Jonah wants to wander.  Finally I get him semi-settled near my lap and the instructor tells all the kids to reach into the basket in the middle of the circle and take two maracas. 

Strike two Jonah has no idea what she’s just said or is ignoring her completely.  So, tears behind my eyes now with confusion and embarrassment, I quickly grab two maracas and hand one to Jonah.  Next we’re instructed to shake our maracas along to a song she’s going to play on the guitar.

Strike three.  Jonah breaks away from me and runs to one edge of the far side of the room, where the wall-length radiator begins.  First he gets a good, quick visual on the scene and then he places his maraca on the bars of the radiator and runs up and down the room – Bat-a-bat-a-bat-a-bat-a-bat-a-bat-a-bat.  You get the idea.  By the time it was over I was practically sobbing. Oh my God what is the matter with my boy?  I’d never seen him in the context of a bunch of other kids his age, all doing the same thing — he being the only one who couldn’t, or wouldn’t.

I need to flush that memory down the garbage chute.

I was fine by the time we got home, and psyched, too, because friend H and I were going to see the Classical Mystery Tour which, to my understanding, was the Albany Symphony Orchestra playing the songs of the Beatles.  It was a birthday present from my dad, who knows I’ve loved the Beatles since I was 13 or 14. (I’d turn down the volume on my Atari 2600 Pitfall game and listen to the Beatles’ 20 Greatest Hits instead).  We had good seats, about half way back.

Last night was almost a full moon, and H and I saw evidence everywhere we looked.  What a strange, amazing night.  I ran into my dentist, of all people, who thought he recognized me as a dental-supplies vendor.  I said, “no, man, you’re my dentist.”  (I don’t think I actually said man).

Then, this guy who tried to direct us to the bathroom had such a heavy accent that we had no idea what he said.  We could only thank him and run far away to laugh until we cried.  We had great seats and noticed a mostly-older audience, though there were plenty of Gen Xers and younger, even.  H went for a drink and even brought me back a t-shirt.

I didn’t realize there was a Beatles look-and-sound alike band playing with the orchestra.  Even after I saw the main instruments and grand piano on the stage, I didn’t realize what we were in for…and then, still before the concert started, things got truly weird.  A man sat down next to me.  He was alone, and I quickly realized he was on the high end of the autism spectrum.  “Don’t you love the Beatles?” he asked happily, and I enthusiastically answered “Yes!”  He was practically bouncing in his seat.

He told me his name, J, and his exact birth date:  November 30th, 1970.  Throughout the concert he would lean in toward me and sing in this beautiful voice.  I sang harmony to his melody and melody to his harmony. When I complimented him on his voice, he told me he was a choir member of St. T’s in a nearby town.  I tried not to stare at him.  It was difficult for me not to love him.

I was amazed and not amazed.  How can I explain?  This is the third concert I’ve been to in two years or so where I was seated next to a disabled person – all were adults, and two of them had autism.  There is no way this is a coincidence.  I have been struggling with finding faith in the midst of all this, and I feel these incidents are nudges from divinity.  I’m here.  I won’t leave you.  Trust.  Don’t worry.  I love you.

All these things and more I hear.  Oh, and I want to share this video, partially narrated by my favorite Father Noone, about the kids in Haiti I’m trying to help.  I realize there is a Frankenstorm coming and perhaps some people will need much more, but even one or two or five dollars will help a cause I believe in strongly.  You can support both.  The tiniest amount, when we all chip in, becomes a miracle.

Who knows why I get all up in arms about one thing and not another?  I think I am behind this because I love Father Noone, and I met Pierre, and now I see, in a world where it evidently requires a billion dollars to run an election campaign, that it is possible to raise this comparatively paltry amount of money so that these kids can go to high school and manage their own country effectively.  Education is everything.

“These Frankendays are yours and mine, Fran-ken-days.”

Be careful, everyone.

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I’m tired, and a little sick to my stomach from thinking about the pain my boo will be in – again.  After the first eye surgery was the first time in his little life that he’d verbally expressed pain.  “Eye hurt!?” he cried, more beg than announcement.  Help me.  Do something.  Why do I feel this way?  And we, helpless, holding him, rocking him, offering him pain meds that obviously weren’t working well enough.

Yesterday my mom and I drove down to see Jonah.  We cycled through our routine – sandwich, bath, barbecue potato chips, black soda (or sometimes, now, cranberry juice), cookie.  Jump jump jump on the bed. Car ride.  “Daddy in backseat?” asked Jonah, but I can’t drive a stick and I wasn’t about to put my mom in arm’s reach of my volatile son, so Jonah had to settle for mama.  On the ride he sang with me and then stared out the window, sucking his thumb two different ways:

Then we drove to the park, and visited the ducks

and he got to swing on his favorite swing

then on we drove, down to the river, where the train tracks run

Jonah and his dad watching the waves from the wake of a ship

When we were done there Jonah wanted another bath and The Wiggles, so we drove back to the apartment…

And all the while he seemed fine –but then he puked.  My mom and I cleaned it up while Andy did the bath part.  I am going to talk to the nutritionist ab0ut the possibility of stomach troubles with Jonah.  He’s been throwing up kind of a lot.

He did very well for his rheumatologist appointment on Friday.  Thank God it was indeed E and J again who drove him up to Albany; I guess it will pretty much always be them.  You don’t know what it means to me to have them.  I will never forget their kindness, to me and to my boo.  Their ability to keep track of everything, keep Jonah busy, keep everything together –it’s all so awesome.  I know I say this over and over but I can’t say it enough.

Still,  I’m not at all looking forward to tomorrow.

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