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Archive for the ‘doctor’ Category

so it goes

Posted in Anderson School, autism, doctor, Uncategorized, tagged , on May 16, 2012| 1 Comment »

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

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

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

And So it Goes, Billy Joel

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

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

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

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

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

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

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

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

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

So it goes.



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light it up blue: boo says please & thank you

Posted in autism, doctor, placement, The Anderson School for Autism, Uncategorized, tagged , , , on April 2, 2012| 4 Comments »

There is something almost routine, now, about kissing my son goodbye after a visit or a doctor appointment.  But sometimes I step back unwittingly from that routine and kissing my son goodbye comes with a horror that feels like the day we said goodbye for that first awful time at the school. 

My mind is pretty good at erasing or dumping some memories and then it refuses to get rid of others;  I will never be able to escape the memory of kissing my son goodbye that day.  I don’t think I’ve ever held my breath for longer than when they led him away, out the door, down the hall.  Gone. 

When Andy and Jonah left today it felt like that.  I had a difficult time listening to what the doctor was saying and absorbing it all.  I gave her the direct number of Jonah’s nurse at school and I wrote down a lot of information before I left, though.  The conversation helped to snap me out of longing to run after Jonah and snatch him up into my arms.

For a while I have needed to go out in an empty field somewhere and scream my head off.  Really scream. 

It sits inside me, that scream.

World Autism Day.  Light it up Blue.  Good.  Make them aware.  Research, figure this out.  Please and thank you.

Today the doctor was a pediatric rheumatologist who is only in Albany two times a week.

Remember when we had to drive all the way to Boston Children’s Hospital?

There was a rumor that she had a practice in Red Hook, close to Boo, but no one could confirm this.   So E took matters into her own hands and found out this doctor lives in Rhinebeck (which also is near where Jonah lives).  E tracked her down and called her home phone to ask her does she have a practice in Red Hook or not?  

(E is badass.  I told you so.  She gets shit done).  But the doc’s got no practice in Red Hook.  

So today Jonah, in honor of World Autism Day, got his official diagnosis of JRA (Juvenile Rheumatoid Arthritis).   Now I am becoming acquainted with yet another disorder/disease.  There are several kinds of JRA, and Jonah’s is called Pauciarticular Onset JRA – the most common form of JRA.  Of the three JRA subtypes, (reads the brochure) children with pauciarticular have the highest risk for getting chronic eye inflammation called uveitis.   So it is piecing together, albeit slowly.  Next Tuesday we’re going back to Dr. Simmons again to see what now.  I’m researching Methotrexate, the drug they’re thinking of recommending.

As I typed this CNN e-mailed and asked me if I’d like to write some more, so I said yes of course, in honor of World Autism Month.  My favorite pressure, the pressure to write.  I guess because it doesn’t feel like pressure at all, the writing.  But as before I have no given theme or direction — they’re entrusting that to me — so I’ll kind of be winging it.  I am honored just to be asked.

Here are some pics of Jonah from the doctor’s office today – I love taking pics of Boo!

First he was happy.  “What color are the flowers, Boo?  Let’s count them!  1…2…3…4…”

Then he got antsy and needed to walk the hallways.  Black kitty he said, pointing. (I think it was actually an owl.)

Luckily we were at the end of a hallway with a big window.  He visited here quite a few times.  It makes you wish you had one of those passes you get if you take your kid w/autism to Disney.  They go first.  No waiting.  Seems like implementing this at the doctor’s would be a really good idea.

I have to say though, she was very cool, this doc.  We’ve been fortunate to have caring doctors for Boo.  A doctor even took the time to help me find where to go when I’d gotten lost.  Thank you, Dr. D.

“Grab a hold
Take these melodies with your hands
Write a song to sing
Isn’t such a bad, bad world

And I say these times are strange
I can feel it in the night
I’m standing in the dark
Holding up for the light

And here I’ll remain
‘Til the great sun shines
Standing in the dark
Waiting up for the light…”

~ Guster, Bad Bad World

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this gets gross

Posted in autism, behavior, doctor, hospital, Uncategorized, tagged , , , on March 20, 2012| 4 Comments »

Monday morning, and it was so early.  6am, which meant E & J  & Jonah had been on the road since 4, up since, what, 2:30am?  3?  J stayed with Jonah, cat-napping in the van.  E & I signed paperwork and I gulped coffee.  When they brought Boo in we went over to the toys in the children’s area.

He played a little…

… but was mostly very tired.  Yawning...

I suited up and held his hand as they wheeled him into the operating room for his exploratory procedure.  His eyes grew big and frightened.  “Just like when you were born,” I whispered, looking around at all the metal instruments, tables, and lights everywhere.  “It’s okay angel.  Mommy’s here,” I said.  The part where they put the gas mask on your child is the hardest.  Jonah struggled, scared, then a little bit of spittle appeared at his lips and he went to sleep.  It’s hard not to panic.  A nurse kindly ushered me out and I joined E in the cafeteria while J napped in the surgical waiting room.

When Jonah was brought into post-op, they called me in first.  Jonah tossed back and forth and I kept repeating “mama’s here, angel.  mama’s here,”  until his eyes focused on me.    I gave him kisses, brushed his damp hair back.  Then I saw he was gonna puke so I got one of those puke dishes, guided him up, and held it under his mouth, not a moment too soon.  He puked and puked and puked again, before laying back, exhausted.  A kind nurse brought him a popsicle, which I assumed was really some flavored electrolyte-replacer, and Jonah ate a few nibbles.  I put balm on his chapped lips.  After a few minutes he asked for J, then repeatedly, so J and E both came in to see us.  J lay right down with Jonah, almost, cradling him.  This big, muscular, scarred, toothpick-chewing boxer turns softie with my little broken boy.

Then Jonah pukes all over himself.  We replace the robe.  I catch the puke in another basin.  The room is full of puke trays and washcloths and tissues.   Suddenly Jonah says “go baffroom?” and tries to get up, quickly.  “K, homie, let’s go,” J said, expertly guiding both Jonah and his IV pole into the  restroom.  Here I am, all proud that Jonah asked when he needed to go to the bathroom,  reveling in that pride, and as I stare at the restroom door I see a red light flash above it, accompanied by an alarm. “They need help,” I called out automatically.  Someone opened the bathroom door and went in, and I caught a quick glimpse of the chaos within.  Puke and pee and poop, all over the place.

When they finally came out and Jonah came back to the room, dressed in a hospital gown, J excused himself to go wash up.  He’d been, um, spray-splattered.  He was exhausted, nearly gagging, and went off to clean and go outside to get some air and Jonah’s change of clothes.

This man is probably paid twelve dollars an hour.   I might be shooting high on that guess.

When he came back in, he was himself again. “Me and homie on a whole new level now,” he joked, putting his arms around my boy as E figured out all the appointments, coordinating it all.

When we loaded Jonah back in the van, a comfy pillow and blanket set up for him, I watched my boy settle into the soft nest, put his thumb in his mouth, and sigh.

I started crying in gratitude and frustration.  It’s not fair that Jonah has to have autism and have operations and other things wrong with him he can’t even understand, and it’s not fair that people like J and E, and all the caregivers — these amazing, wonderful, patient people who literally care for and watch over our children — are paid so little.  Why? I am not pointing a finger at my son’s school.   It’s like this everywhere.  They don’t have the funding?  Who decides who makes what kind of money?

For that matter, why can’t they institute a sliding-scale tuition based on the parents’ income, and put that money toward salary hikes?  I’d gladly get on board and pay my share.  Not all disabled kids are from poor families.  So the rich disabled kid gets exactly the same free services as the poor one?  It doesn’t seem right.  When the kids become adults I can see the equality, but until then I say the parents who are able to should work together to raise the salaries of people we are counting on and grateful for.

Somehow I got on a rant.  I really didn’t mean to.   Basically his eyes looked good.  Jonah’s left eye had high pressure, but that could have been because he didn’t have his eye drops that morning… so they’ll take a measure in the regular office next week, then see what’s what.

They called me today to tell me Jonah had a one-person takedown (a wrap) to keep him under control.  I was at my doctor’s office when my cell-phone rang, which was weird.  And it’s always a strange conversation, because it’s almost always bad news and so I find myself hoping for news which isn’t that bad.  And there isn’t anything to say – they’re required to call a parent when there is a takedown. Okay then, thanks for calling.  I’m really sorry.  I hope nobody is hurt.  (I know someone is hurt, of course).  Sometimes I don’t even want to know these things.

Sometimes I want to know nothing at all.

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eye hurt?!

Posted in autism, doctor, grandma, hospital, singing, tagged , , on March 18, 2012| 4 Comments »

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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the ides of march

Posted in Anderson School, autism, doctor, The Anderson School for Autism, Uncategorized, tagged , , , , on March 15, 2012| 2 Comments »

“Thanks to Shakespeare’s indelible dramatization, March 15—also called the Ides of March—is forever linked with the 44 B.C. assassination of Julius Caesar, and with prophecies of doom.” ~ Brian Handwerk

I have to admit I don’t particularly like Shakespeare, unless I get to see it as intended, as an audience member watching very good actors on a stage.  Reading Shakespeare for me is like trying to translate something you’ll never quite understand.  And we won’t even talk about Chaucer and his bullshit middle English.

But I love to hear my boo talk, no matter how hard to understand or decipher.  When he is happy he fairly chirps – sometimes screams and screeches – and laughs until his tummy hurts.  My God that child can laugh.

Sometimes he’s just giggling but other times he just cracks himself up, or something strikes him as hilarious, or he just is filled with joy.

Tomorrow please God let it be E and J who come to meet me at Jonah’s appointment with the rheumatologist.  I am excited to see Jonah.  I hope he wants hugs and kisses.  I’ll bring bubbles.  Everything will be fine.

There was a beautiful rainbow this morning, and I went in and dragged M outside to see it.  He came out and we stood at the end of the driveway at 7:20am and looked and looked.

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residential educational facility

Posted in Anderson School, autism, behavior, doctor, placement, The Anderson School for Autism, Uncategorized, tagged on December 30, 2011| 4 Comments »

“Jonah lives at a residential educational facility for kids with autism” is how I say it.

Innocent conversation-starter questions at networking events or out in this bad, bad world*:  So Jonah is 9?  Is he in 3rd or4th grade?

I almost always tell the truth, and it sounds like a carefully phrased script constructed to confuse with alliterative, technical-sounding words that hopefully distract the listener while I try to usher the conversation elsewhere. 

Jonah’s at a residential educational facility for kids with autism. 

I’m not trying to be politically correct here, though of course it must seem it.  It’s just that any alternative phrasing feels awful. “Jonah lives an hour and a half away from me, cared for by strangers I have no choice but to trust because his kind of autism comes with behaviors so severe it was unsafe for everybody to keep him at home.”

What else could I say?  “My son’s at a school for kids with autism,” I guess would be okay, but it lacks that alliterative technical-sounding distraction technique and, instead, seems to always invite more questions.

Luckily most folks then let me take us on to “so you went to school for marketing?”

And then, later, I allow myself to wonder what Jonah would be like if he were in 3rd or 4th grade, just a regular kid at a regular school.  Would he still love the water, and celery, and tight hugs and car rides?  Would he be good at different things?  Would we go places and do things together?  Bake and hike and play games?  I get the feeling I’m over-romanticizing regular kids.  You get what you get.  And everybody gets their share of shit.  It’s just sometimes I feel like mine’s smeared all over me.

There are times I don’t talk about because I’m ashamed of them, the times when I forget.  It used to be for a minute, then an hour, then a day.  What I forget is how bad it was, how scared I was all the time, what despair and dread we lived with day after day after God-awful day.   I forget, and then I feel relief, and I tell myself that Jonah is well taken care of and in the best possible place, with his father just 5 minutes away.

I forget, and I am relieved, and I am ashamed.

If I were a born-to-be-a-mother-mother, one of those special people some folks say I am, I’d have found a way to keep him home with me, protected and loved.  No matter what I had to do, no matter how expensive.  No matter if I had to get a second job to pay for a 24-hour personal aide, an autism service dog, a kick-ass nutritionist.  A behavior analyst – Harvard valedictorian, class of 1988.  Some Superdoc who will fix all his violent behavior.

Not everyone should have kids.  It shouldn’t be an expected order of things:  High school.  Then college.  Job.  Engagement.  Marriage.  Buy house.  Have 2.5 kids.  Work until you retire.  Wish you had something to do, wish you still felt important to the world.  I may not understand it fully but I feel it coming, all this being pushed off the planet by the next generation and the generation after that and the generation after that.  Everything starts to confuse you and technology feels exponentially rapid now.

So maybe I shouldn’t have had kids.  The truth is I just really, really wanted some unborn child to have Andy for his/her father.  Unfortunately I was also selfish enough not to realize it probably shouldn’t have been with someone like me.

I don’t mean to sound whiny or crazy.  UGH.  Should I post this mess?

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counting, breathing, bye bye mama

Posted in Anderson School, autism, doctor, placement, swimming, tagged , , , , on July 25, 2011| 7 Comments »

“For things to reveal themselves to us, we need to be ready to abandon our views about them.”
— Thich Nhat Hanh (Being Peace)

Thank you for everyone who voted for me – I seem to be see-sawing back and forth between #20 and #19, and I don’t expect to stay this far up on the list, but I cracked the top 25.  I appreciate your votes, all of you. It’s funny – Elizabeth Moon has a blog on the list (I haven’t looked at it yet) – but she wrote a fantastic book about autism, The Speed of Dark, set slightly in the future, which gave me the idea for the name of my blog; one of her characters said it in the course of a conversation.

So I am relentlessly counting.  Twenty two days – three weeks from tomorrow – we pack up Jonah and all the things they’ve asked us to bring for him, and we drive him away to live at an educational residence for kids with autism.  It’s like a movie I am watching, or a book I forgot what chapter I’m on…a dream I am consciously trying to end.  Sometimes I literally can’t even breathe… I can feel the pressure in my lungs, my heart, my bones, my center.

Tomorrow Andy and I go for our free consultation for divorce mediation.  M is tired of me being miserable and often “snippy” as he calls it.  He helps me watch Jonah 4 times a week and it is wearing on him – he has his own children and he wants time to relax.  My sadness wears on him too; he says I am not the same person I was.  That it true – I am not and never will be again.  It is not his fault that I am a mess.  I wear this like a cloak and I shed the cloak sometimes but then I wrap it around me again.  How many metaphors can I use to describe this kind of helplessness, this form of pain?

Maybe I should be alone.  Maybe I should be done.  The counting won’t stop, this ticking ringing in my ears (I go next Friday for a hearing exam but it won’t stop the clock).  I hold my breath and hold my breath and pray I don’t burst out crying at the gas station or the grocery store.

I try to hold my son tight and he says bye-bye mama, bye-bye mama…

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the necessary path

Posted in Anderson School, autism, behavior, doctor, placement, The Anderson School for Autism, Uncategorized, tagged , , , , , on July 14, 2011| 4 Comments »

“I been talkin’ to Jesus, but he’s not talkin’ to me…”  ~Guster

Wednesday morning I met Andy and Jonah at the Retina Care Center at 7:30am for Jonah’s eye exam.  The last couple times Andy tried to drive him, they never even made it to the building because Jonah was violent, so we hadn’t been there for a while.  And even though we always ask for the first appointment of the day and it is the crack of dawn, there are always about 9 other patients waiting; I don’t think Jonah’s ever been the first patient actually seen by the doctor.

The staff knows Jonah falls apart quickly – they’ve certainly seen it many times before.  And when I say “falls apart,” I mean falls the fuck apart, aggressing so that Andy has to get him out – biting, scratching, kicking and thrashing – and screaming so piercingly, frighteningly loud you could sell the sound as a special-effects scream for a horror movie.

But Jonah did well this time.  He only needed to be re-directed about 40 times during the course of our 15-20 minute wait.  He begged repeatedly for “ride brown car-ah,” dumped the container of glaucoma brochures, nestled his little face against his daddy’s, asking for hug?, yelling MEOW, walking over toward the exam room and back to mama, announcing boobie!, flopping and flailing on the carpet at least twice.  All this on medication to calm him.

(My friend K just e-mailed to tell me it looks like Thing from The Addams Family is crawling on Jonah’s head, and I laughed my head off.  It totally does.  Creepy!)

It’s funny how you go from being embarrassed by your child’s behavior to not really giving a damn if people think you’re bad parents or your kid is an unruly retard.  It took me a good while to get to the place where you don’t give a damn.  It feels better here.

When they finally gave Jonah his eye exam, though, I was impressed at his cooperation to deal with the dilating drops, more waiting in another waiting room, sitting in a strange chair in a small exam room in the near-dark, holding the black plastic thingee over one eye, reciting his letters.  (How do they get this information from non-verbal patients?)  He tolerated the different slides of  smaller and smaller letters – with both eyes, even.  The doc told me later that his eyes were about 20/25.  After she examined his eyes in another exam room (with fancier equipment he also tolerated admirably), Andy and Jonah went bye bye doctor and I stayed behind to talk with her.

She’s kind, sharp and smart; she was the one who operated on Jonah’s left eye.  I trust her.  I made an appointment for October and left, holding the card in my hand, thinking the next time we bring him, it will be after picking him up where he’ll be living, an hour and a half away, at the Anderson School for Autism.  Halfway down the hallway stairs I stopped walking and turned the card over and over in my hand.  “…where he’ll be living, at the Anderson School for Autism…”

I revisited the thought from a place of detachment, kind of the way you do when you first hear about the death of someone close. There isn’t a right way to react to all that has happened during this past year.  I’ve gone into a mode where I’ve ceased to be surprised by anything at all, where every part of me knows that anything can happen, at any time, to anyone.  Everything comes at us so quickly now, and there is a sense of unshakable urgency.

Yesterday after work Andy and I took Jonah for a car ride, and on the way home there was a beautiful rainbow.  (Whenever I see a rainbow, I stop whatever it is I’m doing to take a picture – even if it means running out into the parking lot at work and getting all wet to do it).   I pulled the car over and took as many pictures as I could before I started to feel like that double-rainbow dude on Tosh.O.


I need to continue to notice things, be grateful for things, believe things.
There is no other way right now.  This is my necessary path.

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boston children’s hospital

Posted in autism, behavior, doctor, Uncategorized, tagged , , , , , on July 3, 2011| 3 Comments »

Andy and I Jonah and I left Albany at 6am last Tuesday to bring Jonah to Boston Children’s Hospital for a 9am appointment with a pediatric rheumatologist (because even though we live in the pretty little capital city of New York State, there are zero pediatric rheumatologists here).   Jonah has been limping and was clinically diagnosed with pediatric juvenile arthritis based on other health problems like synovitis in his hip and jaw, and iritis/uveitis in his left eye.

In February of 2010 little boo had an operation on that eye to replace the lens, and they implanted something called Retisert to constantly dispense small doses of steroids locally.  When we got him home and the anesthesia wore off completely, I took a picture of him in his misery.  I guess I wanted to record it while desperate to alleviate it.

I hate this picture.

This was the only time in his little life that he verbally expressed pain to us:  eye hurt, he cried – just once – as if agony could forcibly pull language out of him.

We gave him medicine and I rocked him in my arms, wishing I could fix everything.  Turns out we can’t fix his arthritis either – but it’s mild, they told us, and naproxen should be able to help him with his limping and any associated pain.  They told us neither his eye nor his arthritis would cause his aggressions.  Nobody can tell us what causes the violence exploding like mines inside him, timed to a schedule so erratic it has no business being associated with time at all.

The three hour trip to Boston was okay – we’d given him sedatives the doc had prescribed – and we managed to get him in and out of the short appointment without any major aggressions.  It is undoubtedly an amazing hospital, even aesthetically, complete with musical steps, bubbling walls, and God knows what else we didn’t see because we were in and out of there so quickly.  On the ride home we had to pull over three or four times because Jonah went bezerk.  Andy ended up in the backseat with him, holding him, getting his own arms scratched to hell.  There was virtually no conversation there or back.  We were collectively frazzled – got back into town around 3.

After I dropped Andy and Jonah at the house I went home to my apartment where sweet Jack Ingalls was waiting,

and I lay across the bed, trying to make myself think of nothing.

“The things that I’ve loved; the things that I’ve lost
The things I’ve held sacred that I’ve dropped
I won’t lie no more, you can bet
I don’t want to learn what I’ll need to forget…”

~ Audioslave again, “Doesn’t Remind Me”

I can’t write anything else right now.

I’ll come back.

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god’s nod & anderson’s answer

Posted in Anderson School, autism, behavior, doctor, placement, Uncategorized, tagged , , , on June 26, 2011| 3 Comments »

I was happy to hear on Saturday morning that Governor Cuomo signed the same-sex marriage bill into law.   2011 is ashamedly late for this to be happening, but at least it finally is here.  Equality and inclusion.  As one comedian said, “Gay people should have the right to be miserable, too.”

So in the afternoon, D came to help me watch Jonah for a while, and we rode him around,  meandering all over God’s creation – past ominous black cloud masses, through driving rain as amazing & short-lived as the taste of Fruit Stripe gum,  finally stopping at one of the Albany Airport’s car turn-offs where you can watch the planes take off and land.  There we saw a huge rainbow in the sky –  D took this pic with her phone and e-mailed it to me; of course it looked so much prettier and vibrant in person…

A rainbow the very first day of same-sex marriage equality in New York State!  God’s nod, I said.  D liked that and posted it on facebook.

Of course we stayed just a little too long for Jonah’s liking and so he started unbuckling all of his harness fasteners, the sound a now-familiar harbinger to his freak outs – this one ending with D and Jonah on the grass outside the car.  Safe hands and body was our mantra, D handling Jonah in the calm, seemingly unfazed manner only one with the expertise of working with these kids can pull off…me standing back, arms folded nervously, not sure what to do – a disempowered, frightened mom.   I got it together quickly enough and was grateful it was D who was with me.  She doesn’t call me on my mental state or make me feel bad about its weakness.   She’s supportive and silent, and so we all just move on down the road.  Sometimes she is my sister and sometimes she is my savior.

I should be used to Jonah’s attacking, but whether it is M or Andy or D in the car with me, when Jonah flips out I go unwillingly to a place inside my head that feels like a little girl place – scared out of my mind, horrified at my child intending to do me and others harm.  I go right into verge-of-tears helpless-mom mode.

Meanwhile Andy walks around with wrists (on both sides) slashed with scratches, making him look like he’d recently, half-halfheartedly, continually attempted suicide with a weak grasp on a plastic knife.

Then:

Daddy?  Huck?  Jonah will say, meekly and sweet, followed once with both skinny little arms wrapping around Andy’s neck, gently and loving -& minutes later those same skinny little arms shooting out to grab/bend/throw daddy’s glasses with one hand and scratch blindly with the other.  That kind of pendulum-swing can mess with a person’s head after a while.  If I feel like I’ve lost it, what must Andy feel?

Then, at times Jonah is pensive, listening, almost Buddha-like in his own little zen way.

When D and I were driving Jonah home after leaving the airport, once in a while he’d sing little snatches of Cake, or Guster, or Paul Simon songs, in tune and perfect rhythm — and D and I would look at each other and say awwww.  He is first a child-demon and next an engaging angel.

By Monday or Tuesday we should know Anderson’s answer. Andy and I are leaving at 6am Tuesday morning to take Jonah to Children’s Hospital in Boston, where he’ll see a pediatric rheumatologist.  I don’t know how in hell we’re going to make it to Boston and back safely, let alone out of the car and into the hospital itself.

As Brett on Match Game would say: Good gravy.   As I would say: shit.

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