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This morning I met Jonah, J, and P (his transporter/caregivers) for Boo’s retina doctor appointment.

It was raining out as I walked over to the van to greet them, and people going into the building either had umbrellas or were running to get to a dry place.  But I love being out in warm rain (and even pouring rain, if I’m at my house so I can go inside and change).  Jonah’s like me.  He stepped down from the van to the pavement and we danced around in the rain for a minute before going inside.  I greeted him with kiss and blue octopus and fruit snacks, and he was in a happy mood.  He sat nicely in the waiting room, too.

fruit snacks + blue octopus = happy jonah

fruit snacks + blue octopus = happy jonah

As we waited in the exam room for the doc, he sat on his legs, facing the back of the chair.  Then he lowered his torso and let me scratch his back and give him a little massage.  More here, he’d say, moving my hand to the spot he wanted scratched.  He even stuck his butt in the air.  “You scratch your own butt,” I told him, and he giggled.  He does have a sense of humor, my Boo.  He asked for kisses on his elbow, shoulder, head, and belly.  I tickled him and got more laughs.

He never lets me do this and it is wonderful.  Rare like a jewel.

He lifts his shirt so I can scratch and rub and kiss his back.  Kiss neck? he asks, and I happily oblige, pouring a weeks’ worth of love and affection into every touch and every kiss, whispering to him how much I love him, how he is my angel.

Boo was great for the doctor, too, tipping his head back like a pro for the eye drops.  The pressure in both eyes was 12 (very good) and the doc said she could see the back of the left eye some, finally.  When she tested that eye, he pulled his usual bullshitting: “A…X…J…G” – no matter what the letters really were…as if he thought he could outsmart us by declaring the letters with confident, rapid clarity.  So I’m in the corner laughing with P and then the doc tries holding her fingers up instead, and he could tell her how many fingers correctly from about a foot away.  This is super-encouraging because it means there is still sight in Jonah’s left eye.  And maybe it’ll even improve.   Best news of the day, hands down.

My boy has had a good week behaviorally, following a crappy week.  I’m starting to accept the uncertain cycle of this, for the time being anyway.

I’m writing so much that these newly-August weeks are filled with work; I took on a temporary assignment for standardized test passages in addition to my other job with Modest Needs.  I have two deadlines swiftly approaching.  That’s just fine with me. When you love to do something, they say, it ceases to be work – and I agree.  I love my job(s).  At the tender age of 43, I’ve been set free of the rat cage.  It almost feels like retirement, sans boredom.  I have nothing to complain about.  No matter what happens, I have been blessed.  Nothing can take that away.

Tomorrow my mom and I will drive down to Rhinebeck as usual, hoping Boo will be like he was today – but even if he’s aggressive and impossible to handle, he can see out of both eyes, and that’s what I’ll be most thankful for, no matter which Jonah the world hands us.

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Note:  This is kind of stream-of-consciousness – I am writing lazily and may or may not proofread or edit…

This morning, P, one of Jonah’s caregiver/bring-to-the-doctor folks, called me at 8:09am on my cell phone.  I was still lying in bed and answered sleepily.  Jonah had an 8am doc appointment today with his glaucoma doc and I’d forgotten to write it on my calendar.  There was no way I’d make it there, so I asked P to please call me after the appointment.

I want to emphasize my continuous daily gratitude at the mere fact that I can still be in bed at 8:09am on a weekday at all.  It’s a distressing mystery how (and how quickly) I furtively and quietly descend from undying gratitude to a place where I am taking everything for granted.  I’m doing pretty well at maintaining the self-awareness necessary to stay in appreciation mode, though.  So I am still here in Thankful Land; even though it may not sound like it, gratitude is still my foundation.

When P called me after the appointment, she told me they weren’t able to do anything there.  Jonah attacked her, J, the nurse, the doc…everyone but mama, the no-show.  My immediate reaction was guilt — he expected mama to be there.  I wasn’t there with octopus and fruit snacks and slinky and a drink.  I started to cry and I said “I’m so sorry” – everyone had gotten at least a good scratch or bite, I’m sure.  And I’m sorry because maybe if I was there he’d have been fine.  Three hours driving for nothing.  P told me it wasn’t my fault — and maybe it wasn’t — but my forgetting the appointment was my fault, and I don’t think I’ve ever done it before.  So they have to reschedule and drive back up tomorrow or the next day if possible, because the doc is going on vacation. 

Maybe it was divine intervention – I couldn’t handle seeing Jonah like that, so I was supposed to miss this appointment so I wouldn’t have to watch (or be injured by) Jonah’s out-of-the-blue attack modes.  It’s just one more thing to add to the list of everything I don’t know.  Good thing I am relatively comfortable with ignorance where it can’t be helped.

Is it normal for me to constantly want to attach Jonah’s behaviors to some shred of meaning?  I am not a ruminator but maybe I should be more of one.  Maybe if I tried harder to attach things, they would finally attach.  For some reason today I need to feel like someone understands, and the blessing is that (partially because of a core group of readers’ comments), I know people understand.

There should be a non-fiction, realistic, autism book out there to help us feel like we are not alone and to educate the world that there are plenty of us who are just making it day by day, as best we can.  I’ve read most of the well-known “autism family” non-fiction books, but they seem to offer not empathy but rather a superior attitude.  And 90% of them (or maybe even 100%) are written about children with very high-functioning autism (or kids who were low-functioning, but thanks to the Superparents’ dogged determination, have climbed their way out of the darkness of autism into the fucking light).  Evidently the rest of us can rest assured we have done everything wrong, made bad choices, and are selfishly lacking in the love-drive necessary to save our children like the people in the books.

Now I’m projecting.

I feel angry today. Can you tell?

Part of the reason I haven’t written in a while is personal, stuff that doesn’t belong here but has nonetheless messed with my head on one level or another…not all in a bad way.  I have found out where I stand in order of importance/significance/priority with a person or two, and that order was lower than I knew, and that hurts. But I do it to myself.  You teach people how to treat you, as Dr. Phil used to say back when he was still good.  I’ve taught a lot of people to treat me however they please.  Unless you have hurt me in an ongoing, vicious, or deliberately harmful way, everybody knows it’s a safe bet Amy will capitulate on the side of letting it go… or letting it be, right K?   It’s the path of least resistance.

The truth is, though, things like this usually dissipate quickly.  They exit my mind…and so they’re only really a problem if I allow them to be.

A joyful Sunday – went with my wonderful friend D and her husband to Tanglewood for the Boston Symphony Orchestra, which was fun and lovely.   The Royal Baby was born (I wanted Kate to have a girl, though).  I watched the last episode of The Sopranos last night (which, perhaps for the same reason I love Schubert’s Unfinished Symphony and Lois Lowry’s The Giver, I found appropriate, clever, and chilling).  Then all the news: George Zimmerman and Helen Thomas, and this star’s marriage and the latest viral video.  And the way I put off writing here when I feel dangerously upset or anxious, because I don’t want to come off like I’m having a pity party.  The phone calls each night between Andy and me.  Something I said to him on Saturday I wish I could take back because it laid me so bare I shivered in the heat. 

Inside me today lives an unrest that may last for a day but has the potential to go on and on unless I get a grip, which I undoubtedly will, given the fact that I’m not sitting at a desk in an office selling advertising and trying not to feel all this.

I will post some picture-stores of what’s been happening since last I wrote.

On Sunday the 15th I went to Delmar for brunch to hear my lovely friend Chrys play with the Jim Sande Ensemble (they were awesome)

On Sunday the 15th I went to Delmar for brunch to hear my lovely friend Chrys play with the Jim Sande Ensemble (they were awesome)

Jonah, last week at the same glaucoma doc he flipped out on today.  Here they are testing his left eye.  He can't see out of the eye and is about to give some bullshit answer.

Jonah, last week at the same glaucoma doc he flipped out on today. Here they are testing his left eye. He can’t see out of the eye and is about to give some bullshit answer.

Boo playing nicely with the slinky I'd brought him...sitting in the waiting room patiently for doctor number two, this time planned.  He was a good boy the whole time.

Boo playing nicely with the slinky I’d brought him…sitting in the waiting room patiently for doctor number two, this time planned that way. He was a very good boy the whole time.

Chillin' while he waits for doctor number two, who told us everything looks great and the cloudy blood cells are beginning to dissipate).

Chillin’ while he waits for doctor number two, who told us everything looks great and the cloudy blood cells are beginning to dissipate.  He got to leave without the eye shield, too!  He’s had it on for two whole months.  Poor kid.

This past Saturday:  Daddy helping Jonah put his shoes on -- and no more eye shield, finally!

This past Saturday: Daddy helping Jonah put his shoes on — and no more eye shield, finally!

Here’s a cute little video of us in the car:  me handing Jonah some lip balm and showing him how to press his lips together afterward.

Me, at Tanglewood Sunday afternoon, about to enjoy Tchaikovsky, Bach, and Tellmann (all contemporaries; Beethoven and Mozart came next)

Me, at Tanglewood Sunday afternoon, about to enjoy Tchaikovsky, Bach, and Tellmann (all contemporaries; Beethoven and Mozart came next)

When the music's over...

When the music’s over…

Lots of writing work today.  I can tune my TV to 1270 and go back to the music…

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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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Last Saturday I brought the big-ass pillow with us (the kind that you use as a backrest, with two “arms” on either side) and we successfully got all 4 of us in the car for a ride.  The pillow served to protect the backseat occupant with its bulk and punching-bag-like sturdiness.

The way we accomplished it was to put the pillow in the backseat right from the time we picked Boo up at the residence, and then after his lunch, we told him “we’re all going to the grocery store and grandma’s coming too.”  When he started to protest we reminded him that we’re going to buy chocolate donuts but only if grandma can come.  And by gosh, it worked.  He was even good in the car — he liked the pillow and rubbed it as we drove along.

Boo with his new grey pillow

Boo with his new grey pillow

a soft barrier

a soft barrier

I taped a small conversation we had along the way, though he’s parroting through most of it:

Overall it was a good visit.  At the store Boo successfully navigated the cart politely around other shoppers to the exact location where the beloved chocolate donuts awaited his arrival.  This Saturday we switched our visit to Sunday, so I will see him tomorrow, on Father’s Day, then come home in time to take my own dad out for dinner.

Instead M and I indulged in other plans, afterward ending up driving near Thatcher Park.  What a gorgeous day.

gorgeous day for it

beautiful

the bluest sky

the bluest sky

When we got home M wanted a nap so I took a walk alone to Buckingham Park and took some more pictures, then made some “nature art.”

Always there are ducks and geese, fish and turtles.

Always there are ducks and geese, fish and turtles.

I liked this little boy and took his picture as he watched a goose

I liked this little boy and took his picture at the park

I sat in the grass and I materials that were within reach

I sat in the grass and used materials that were within reach

On Wednesday Jonah had another follow-up appointment with the eye doc/surgeon.  It wasn’t a good visit.  I’m grateful that sometimes it is easier to handle Jonah’s outbursts/aggressions/whatever-you-wanna-call-them.  Sometimes they roll off me like rain washing river-paths along my body, navigating around my heart.  I don’t know why – I wish I could tap into those “sometimes” all the time.  Maybe it had something to do with the rain falling on us all week…

…but, at first, he was good.  Two care-givers from the school brought him up, so I felt more secure knowing they were there.  Still, I came armed with fruit snacks and a yellow octopus I’d bought ahead of time.  He liked both of these gifts.

all, at first, was fine

all, at first, was fine

He even smiled as she guided his head into the eye machine

He even smiled as she guided his head into the eye machine

She told us the pressure in his eye was 18 – nice and low.  She doubted herself and took the measurement again, and got 17.  She looked in his eye and said there was a lot less blood present.  We asked if he could go without the eye shield now but she said no.  This means he’s been wearing the thing for more than a month and has to keep wearing it for we-don’t-know-how-long.  Then she asked Jonah to sit back in the chair and he suddenly freaked, arching his back and standing up, his face melting into anger and sadness.

You can see one caregiver behind him and one in front.

You can see one caregiver behind him and one in front.

And yes, in case you’re wondering, it is awkward for me to whip out a camera at these moments to take a picture (all in the name of photo-journalism).  One more pic, and then I was required to enter the fray.

??????????????????????

Moments after this picture he bit N’s wrist, hard, drawing blood.  (The dude is about to retire; I bet he feels it’s none too soon).

After this we got Jonah down on the floor, where he thrashed, kicked, hit, head-butted…the usual whole 9 yards.  In the interest of protecting the two of us at his feet, I leaned in to take off his left shoe and BAM he thrust forward at the same time and kicked the shit out of my right shoulder and, afterward, scratched me up right between the eyes. (I never wear glasses around Boo anymore).  Eventually it took me, the two caregivers, and even the doc herself to get Jonah under control.

My tears were brief, and all for Jonah this time, whose face crumpled, desperately upset — innocent even in the midst of the aggressions.  The doc hadn’t yet done the ultrasound, which is an important part of the whole exam, but she made the wise choice to put this off, scheduling another appointment for a week away, making this coming Wednesday another anticipated & exciting attempt at examining his eye properly.

Then we somehow convinced Jonah that it was all over, that there would be no more doctor, that we were all done.  N was able to stand him up and guide him out of the office, holding both his arms.  I stayed behind to check out and make the next appointment.  Of course I could feel all  eyes on me, all the seated, (mostly) senior citizens who’d heard the screaming and carrying on, but I’m used to that.  What I’m not used to is what happened next with the elderly lady in line behind me.  I glanced at her and smiled, but she narrowed her eyes at me, the corners of her mouth turning sour-down in disapproval, shaking her head as if to say “what a shame you can’t raise a child who isn’t such a brat.”  Instead of shoving her over like I wanted to, I turned back to the receptionist, got our paperwork and appointment card, and quickly walked away.

Andy just called and said Jonah was good today, both with him and at the residence.  May tomorrow be a happy day too.

Happy Father’s Day to all the fathers out there, all the step-fathers, foster fathers, grandfathers, and people who act as fathers to others….to all the fathers no longer with us, to all the brand new fathers, and to fathers who are sick or alone, and to all the men who decided not to be fathers because they were mature enough to know they didn’t want to do it.

When it is Mother’s Day I usually also give a shout-out to all birth mothers who selflessly made adoption plans for their babies, but I don’t feel the same way about birth fathers.  Perhaps I should, but I just don’t.  At least not about the ones who don’t stick around long enough to see the whole thing through, and I haven’t heard about too many of those.   I couldn’t give a crap about my birth father…who he is, or where he is, or why.  At least my birth mother carried me in her womb and then had whatever it takes to watch as they took me away.

I miss my mom’s dad, who I called “Poppy.”  Jonah’s middle name is Poppy’s first name — Russell.   He died just after I’d gotten engaged to Andy.  I wish I could have known my other grandfather, my dad’s dad, but he died when I was a year old or so.  He was a deputy fire chief in Albany, and was just 57 when he passed away.

I honor Andy as our son’s father, and I’m looking forward to honoring my own father too, by spending some time with him and taking him out to dinner later in the day.

It has been good.  I feel like I can handle things.  And I’m grateful for that.

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I have not wanted to write here.  I am only going to spout lots of depressing crap in this post, so if you don’t feel like reading it, please feel free to skip this one altogether.  It reads too much like a diary and is too personal.  I admit things I don’t want to admit.  I’m this close to deleting the whole damn post.  In fact I want you to skip it.

Sigh.

When my mom and I drove down to visit Jonah last Saturday it was difficult all around.  Andy had taken Jonah the night before for an overnight visit, and Jonah didn’t fall asleep until 5am.  I don’t know if it was the heat that kept Jonah up or what, but as a result Andy was exhausted.  At first the only discernable effect on Jonah was a strangely voracious appetite, asking for one food after another, though later he napped against the window on his car ride.

asleep in the car

asleep in the car

He refuses to have all 3 of us in the car, which almost always means my mom has to stay back at the apartment while Andy and I drive him around.

This time we tried to force the issue, but Jonah wasn’t having it.  My mom got in the back of the car with him and Jonah immediately attacked her, pulling her shirt and scratching up her shoulder.  So as usual she went inside and watched Fox or QVC or whatever the hell on TV.  But she’s sick of it, the whole thing, the making sandwiches for all of us ahead of time and driving an hour and a half every week to bring Jonah gummy bears, chips, special treats, then visiting him for 10 minutes and being left behind.  She’s tired and she doesn’t want to do it anymore, as much as she loves her grandson.  Then, to add to it, Andy and I have been arguing on the car rides recently and sometimes I come back crying, and that pisses her off too.  She yelled at me on our ride back home, demanding why can’t two people get along for 3 hours once a week?

I have no answer.  I don’t know why.  It was never a problem before.

There is so much frustration in everything that has to do with Jonah now.  God help me but sometimes I don’t want to drive down either.  Back home I sit in Jonah’s room sometimes — I’ve got it decorated like a guest room now:

Jonah would destroy all of it with one sweep of his arm

Jonah would destroy all of this with one sweep of his arm

I look at it all and then close my eyes.  I picture the room as we’d prepared it before he was born:  the pale green checkered curtains and light wood crib with matching green checkered bedding.  The toy box, bookshelf full of baby books, closet & dresser full of tiny clothes.  The before.  And the wee baby days when Jonah was sweet, strong, holding his head up early, walking early.  We all thought he was so very healthy, so uniquely intelligent.  I’d nurse him on my lap and balance my own dinner on the edge of the boppy pillow, gazing down at my beautiful son, our eyes meeting with love.

"those were the days"

“those were the days”

“And you know where you were then…”  I sigh too because sweet, innocent, dingbat Edith (Jean Stapleton) of my favorite show has died, “stifled” all too soon, even if she was 90.

Now we don’t know where we are, or what to do to solve anything, and more questions, trouble, worries appear on the horizon of each day.  I have no health insurance for 90 days, and I can’t afford COBRA.  I need to find out what insurance paid for which doctor and what medicine so I can ensure Jonah is still covered for everything he needs through Medicaid disability.  Andy wants to get a divorce now (we are currently legally separated).  He has been saying for some time that he no longer wants me to help him monetarily — not with health insurance, not with car insurance, not with anything — going so far as to tell me (in a moment of hyperbole) that he’d never talk to me again if I paid for any of his expenses.  Maybe the divorce will give him closure; maybe it will make him less angry at me so much of the time.  I don’t know.  But even a no-contest divorce through our mediator is more expensive than I guessed.

And I keep thinking I should make an appointment with Jonah’s psych doctor, talk to her about weaning him off the cocktail of meds which are supposed to mitigate the anxiety and aggression, then put him back on them one at a time to see what works and what doesn’t…but I’m not sure it’s the right thing to do and I’m not sure who can tell me or how damaging it might be for Boo to put him through that.  Plus I want his eye to heal first.  I don’t know what to do.

Andy took him to the eye doctor in Rhinebeck today.  When he called me tonight to give me the daily “Jonah report,” he told me the eye doc checked Boo’s vision in the left eye…and that now Jonah can’t see anything out of that eye at all.  My heart stopped. You mean all this has been for nothing?  The operation…the hell week afterward…the anguish and the aggressions and the all of the everything?

Evidently Jonah can’t see out of his left eye because it has hemorrhaged somewhat and there is still blood in it, blocking the retina, so the doc was not over-alarmed. But Andy says it will take a very long time for the blood to clear.  Does it mean Jonah will have to wear the eye shield for another week?  Another month?  Does it mean that when the blood clears, he will be able to see again?  We don’t know.

We don’t know what is going to happen and we don’t know how to visit with Jonah and we don’t fucking know.  Andy took Jonah for a while today and Jonah attacked him twice when they were having “quiet time” lying on Andy’s bed.  Other than that he was good, Andy told me.  Other than being attacked twice…

On Sunday M and I went to church, a non-denominational Protestant Christian church his co-worker goes to in Schodack.  It was the first time in decades I’d been to anything but a Catholic Church.  I suppose it should be easy for one raised Catholic to go from the seeped-in-ritual Mass to the virtually ritual-less service of this kind of place — at least easier than if it were reversed, and one had to try to unravel all the movements and prayers of the Catholics.  But the pastor spoke about the story of Abraham and how God told him to sacrifice his son.  I started to cry, of course, silently, drawing an immediate parallel to my own life, and I couldn’t stop the tears through the whole service.  I felt like an idiot, though M assured me afterward that it was a perfectly fine place to have tears rolling down your face.  I suppose I should be glad of that.  (Of course, in the Bible passage, as soon as Abraham agreed to sacrifice his son, God changed His mind and let the child live).

My little Boo, the sacrificial lamb.

We gave him up all right, but for what?  He’s been at his residential school for nearly two years, and though he has learned a lot, his aggressions haven’t gone away at all.  If the medicine is mitigating the aggressions, I shudder to think of what he would be like without them.  He is now older, stronger.  Are they simply managing him?  No.  He is learning and he does have good days of joy and peace.  But still he moves lightning-quick to strike and slap and pull hair, to hit, to kick, to hurt whomever is in range, even when he has just been given something he wants – even when he seems perfectly happy just microseconds prior to the aggression.  It’s as if Andy and I have permanent PTSD.  Or just TSD, because there isn’t any Post.  It’s ongoing.  I am ashamed to say it but I am grateful I do not have to take care of my son; I am grateful he is not in my home.

And now I will admit the most shameful thing of all:  sometimes, on the worst days, I become ignorantly envious of parents whose children sicken and die, and for this simple reason: because there is an end to it. 

No, of course I don’t want Jonah to die.  And I am not really envious of parents whose children die.  I know it would be horrible, beyond my imagination or comprehension.  It’s the end to it that I want. 

I just want an end to it. 

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Hi everyone

Jonah and I and Andy have been living at my mom’s house since Jonah’s operation on Tuesday.  She has no Internet access so I am running home to pick up clothes and hurry back; Jonah needs constant vigilant attention right now.  Although the operation went well and he is okay (thank God), he is uncomfortable, often unbearably demanding (wanna go see train?  want breakfast sandwich?   want cupcake? — over and over, ad infinitum, and sometimes at all hours of the night), and, at times, extremely aggressive.

He has a follow-up appointment on Monday, after which we are going to try to bring him back to his residence.  My mom and Andy and I are scratched, bitten, kicked, and hit on a daily basis, and since Jonah MUST NOT touch his eye it takes all three of us to handle him.

When I return to write more it will be to express far more gratitude than I am feeling right at this moment.  I will say, for now, thank God for my mother – for without her I don’t know where we would be or what we would do.

Thank you to everyone who has reached out with caring support.  It means much more to us than you know.

pre-op, Jonah holding his ScareMeNot, Deep Breath Dudley

Pre-op, Jonah holding his ScareMeNot, Deep Breath Dudley, with daddy

waking up right after the operation

waking up right after the operation

During a calm moment -he got to see his beloved train...

During a calm moment -he got to see his beloved train…

Back as soon as I can be….

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Andy called yesterday to tell me Jonah had a bad tantrum/aggression in the van – not sure where they were going to (or coming from), but Jonah was being all snuggly & lovey with a caregiver one moment, then launched himself at her, grabbing a chunk of her hair.  Another caregiver tried to intervene but Jonah got a chunk of her hair too.  When it was all over, Jonah had two handfuls of hair and a small bruise.

I’d almost rather hear that some kid attacked Jonah and got a hunk of his hair than be told Jonah was the aggressor.

His caregivers are dedicated individuals who deserve to be wealthy, and though I have been assured they are paid better than at some other schools, I still don’t see why they don’t get more for what they endure, and how they love, and why they do what they do…which is essentially to be foster parents for groups of disabled children.

So many things work backwards in our world.  God forgive us all for not caring more about one another.

I know Jonah does not hurt others deliberately, or at least not with malicious intent, and I know he can’t help who he is and what goes on in his little brain…but that knowledge doesn’t fix anything or help the pain I feel when he hurts others.  In all my life I never imagined giving birth to one who harms people.  It’s almost funny.

And in a little more than two weeks he will have his big eye operation to take the Reticert implant out, in a last ditch effort to save what little sight he has remaining in his left eye.  The irreverent thought just came into my mind that if Jonah cannot see as well, perhaps he will at least start missing his targets.  Andy and I will have to be hyper-vigilant to ensure Jonah does not touch his eye shield or try to itch his eye beneath it.

Today I am going to visit my therapist and I will talk to him about my struggle with this ever-cyclic aggressive behavior I can’t accept and have no power to control.  I know better than to hold on to the wish to control it, and I know better than to place blame upon myself, or upon Jonah, or upon God, or upon anything at all.  I know better.  I just can’t help the tears that always come, the feelings that always arise, the frustration I always feel.  The fear that as he gets older and bigger it will only get worse.  Hopefully Dr. A. can help me with all that.

I know when there is a situation I cannot change, I can only change how I react to it.  And so I am making changes.  Now I exercise, eat better, meditate, pray, and take long walks in the woods.  I breathe deeply, in and out.  In and out.

I’m counting on the spring to bring new life, new hope, and new health, body-mind-spirit all working together to find the place inside where things are quiet and still.  Where music plays and my heart rejoices.  Where there is peace.

No one gives their dreams away too lightly
They hold them tightly warm against cold
One more year of traveling ’round this circuit
Then you can work it into gold

They say, “Jonah, he was swallowed by a whale”, hmm
But I say, “There’s no truth to that tale”
I know Jonah, he was swallowed by a song

Here’s to all the boys who came along
Carrying soft guitars in cardboard cases all night long
An’ do you wonder where those boys have gone?
Do you wonder where those boys have gone?

Jonah by Paul Simon

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