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Whenever I stop blogging for a week or longer, there is too much to say.  Then another day goes by and more happens, and I start to dread attempting to sift through it all to highlight all the events, which then usually get amalgamated.  So be it.

Sometimes I’m lazy and turn everything into a pictorial.  This will be kind of like that, I suppose.

Last week Jonah had a doc appointment with the pediatric rheumatologist at Albany Med.  I love her and her staff.  They get Jonah right into a room and usually see him quickly.  I’d made sure to buy a whole pile of octopi, so I was prepared with both that and a bag of fruit snacks for Boo.  I called my dad to see if he wanted to come, because Jonah is rarely aggressive at this particular doctor, and I thought Jonah would like to see his “pa.”  So my dad met us there.  But Murphy’s Law being what it is, Jonah came at me at his usual light-speed and grabbed the front of my shirt, nearly ripping it in half down the middle.  Luckily both N and P were there from the school, so they intervened quickly and that was that.  It was enough to send my dad off into the waiting room for the rest of the appointment.  Though I tried twice to convince him to come back in the room, he refused.  His theory is Jonah aggressed because he was there, which may or may not be true…but he was a good boy for the rest of the appointment.

Jonah with his octopus and fruit snacks (and still, the eye shield)

Jonah with his octopus and fruit snacks (and still, the eye shield)
Boo, acting all punk-ass, slouched in the big chair

Boo, acting all punk-ass, slouched in the big chair

It’s a shame my dad did not get to see him for a longer period of time. I think he carries a deep sadness inside him, a kind of trepidation in his gut that simply will not abate.  I understand this, though it’s distressing for me to witness.  Sometimes I wish my parents had adopted another kid or two, so they’d have more grandchildren.

This was the second doc appointment that week, the first being the amazing one I’d talked about last post, so I got to see Jonah 4 times in one week, most of which were affectionate and joyful visits.

Though his retina doc still wants Boo to wear the eye shield, we got permission for him to go swimming with a life vest on (so he wouldn’t go too much underwater), and evidently Jonah was okay with that, even though he has never in his life needed a life vest.  I thought he’d pitch a fit, wanting to go deep under and swim along the bottom as is his preference…but I suppose he was in no mood to look this gift horse in the mouth (even one which forced him to compromise).

I missed him so much after that — maybe because I’d gotten to see him so many times the week before.  So I was really looking forward to yesterday.  When my mom and I were driving down I was in an awesome mood.

But the visit was tough.  Jonah was on the playground when we arrived to pick him up, and though I held my arms out wide for a big hug, he ran straight into daddy’s embrace.  This I can handle and understand; he is with his dad more than he is with me, but still I can’t help wishing he’d run to mama once in a while.

We arrived at the apartment and all seemed okay.  I was proud of myself because once he tried to lash out at me and I deflected his swing “Karate Kid” style, wax on-wax off, just like Daniel-son.  But then he got me good a few minutes later, coming at me with two fists and tightening each on a wad of my hair.  I called out and Andy came running, lowering Jonah to the floor and telling me to come with them (as if I had a choice).  I grabbed each of Jonah’s fists and pushed them into my head so as to lower the pain level and ensure he didn’t dig his fingernails too deep into my scalp.   While Andy was trying to disengage Jonah’s fingers and my mom tried to reason with him (Now Jonah, don’t hurt mommy), I writhed on the floor and cried like a wimp.

Then Jonah scratched up my eyelid (my eyes were closed tight) and bit my left arm, twice, hard, leaving painful welts I can feel today.  His shoes were still on, so I got a few nice hard kicks to the stomach as well.  Finally Andy disengaged him and I ran into the bathroom and closed the door.  If I’d had a sense of humor about it at the time, I’d have taken my camera into the bathroom and shot pics of myself.  My hair looked Halloween-crazy, teased into a mountain of snarls and tangles.  I carefully combed it out and removed a huge handful of hair from the comb,  washed my face with cool water, took a few deep breaths, and came back out to the kitchen.

After that he was mostly okay.  I’d bought him a train video (a double DVD of real trains) and he liked that.  We took Jonah for a car ride (my mom stayed back after I helped her log into Facebook so she could look up some relatives) and Andy gave him an eye drop, and for a while it was peaceful enough.  Later we had to pull over twice because Boo started crying and asking for one of his favorite caretakers at his residence.  Each time Andy got out of the car and hugged him tight, letting him cry.  I breathed deep.

We'd taken the eye shield of to give him his drop but you can see how it looked all gooky

We’d taken the eye shield off to give him his drop, but you can see how it looked all gooky

We have two more eye doc appointments next week – one at the glaucoma doc and another back at the retina doc.  I hope and pray the blood in his eye has abated, and that he will have some sight left in the eye, and that he can swim as he likes for as long as he likes.  My poor Boo.

Someone at his school called me last week to see if I had any questions about Jonah’s progress or anything I was concerned with, and I mentioned the medications and the aggressions-sans-antecedents, and she assured me that it was a fine idea to speak with Boo’s med doc, though I still want to wait until his eye situation is under control.  Also, the pediatric rheumatologist saw no problems with his joints, so if he does not need it for the eye, we may be taking him off the Humira and possibly also the Methotrexate.  So I don’t want to monkey with his psych meds at the same time.

It is hot today and I am smiling just picturing him able to go in that pool – not being left behind as all the other kids get to swim.  I hope he is having a happy day.  I’m still doing well and shrugging off the incidents where he hurts me.  I know he does not mean to hurt his mama.  I know he loves me and I love him and we are all doing everything we can to ensure his happiness, safety, and well-being.

I know we are lucky – especially when I broaden my perspective and think of the rest of this planet.

Every morning I wake up and the first thing I think is thank you.  My new job has an overwhelmingly positive effect on every single piece of what I think, what I do, and what has become most important to me.

Andy may bring Jonah up this week to swim in my mom’s neighbor’s pool.   We just have to borrow a life vest from someone.  I will get in the pool with him and we’ll have a blast.  At least this is what I hope.

“We must accept finite disappointment, but never lose infinite hope.”

~ Martin Luther King, Jr.

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!!!

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.

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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.

“Turn the clock to zero, boss
The river’s wide, we’ll swim across…
Started up a brand new day.

It could happen to you – just like it happened to me
There’s simply no immunity – there’s no guarantee.
I say love’s such a force – if you find yourself in it,
And sometimes no reflection’s there…”

lyrics from Brand New Day by Sting

Well I’ll be damned.  I cough up all kinds of ugly, shameful, depressing self pity and all I get is affirmation and support in return.  Comments here, e-mails, facebook messages — and from all over the world.   When I woke the next day after spewing forth that mess of a post, I expected judgement and anger and shock…and there was none. Instead there was understanding, kindness, gentle proddings and sound suggestions.  All I can say is thank you, from the depths of me, humbled and comforted.  Thank you.

It’s as if, now, I’ve been allowed to re-set it all and separate everything out into manageable portions.  I’ve secured Jonah’s medications through Medicaid.  I bought one of those big pillows with arms on it, so we could place it between Jonah and whomever braves the back seat with him and prevent injury until Andy and I can buy a harness like Andy has in his own car.  I drove over to my mom’s and we spoke reasonably about what we should do, and how, and when.  I spoke to Andy and we are calm with one another, cooperating, making moments of quiet and peace within every conversation.

Yesterday’s “Jonah’s report” included the irony of another child attacking Boo, who came away with but a few scratches.  I asked if Jonah had “snapped” and fought back, and the answer was no.  More proof that there is no rhyme or reason to our son.  I suppose it is my path, this crazy brick road, and I shall follow it through forests of angry talking trees and witch-sent flying monkeys until I reach the emerald land of Oz.

Pay no attention to the man behind the curtain.

Someday I will awaken to find it all a dream, to find I could have left the whole time had I really wanted to, had I clicked the ruby shoes together.  Until then I will take things in little pieces, bite-sized problems to nibble, one at a time.

And meanwhile I have this wonderful job which came along at precisely the right moment – turn the clock to zero, boss – my work filled with writing, editing, proofreading, none of it feeling like work at all.  I do my work on the couch with a laptop, turn the TV to the classical music station, take short breaks to water my garden flowers or walk in the backyard with Manzo-kitty and Jack-dog.  Sometimes I take moments in silence to close my eyes, breathe in and out, day-dream, pray, meditate, allowing myself to be grateful…hopeful…to recover from each fall until I feel my wings’ re-growth and I can fly once again, gliding over everything.

And for the first time in my life, I work for a living doing something I truly love – something that, when I lay my head on the pillow at night, makes me smile in the knowledge:  Today I have helped others. Today I have taken strangers’ problems and turned them into opportunities.  I am doing good in the world.

I never thought I’d come to this much trouble or this much joy, let alone all mixed together, paint-colors running on a canvas into pools of artwork.  It feels good to be able to stand it all, the crazy pain and soaring pleasure in turns, strengthened by support from so many…heightened by a renewed determination brought by every brand new day.

I’ll share photos today of random beautiful things, people and places:

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This woman played beautifully, heart-wrenchingly, in New York City’s Central Park.

instructions for my son?

instructions for my son?

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Stained glass in the windows of Christ our Light Church in Loudonville, where I used to work once upon a time

Jonah visits some chickens

Jonah visits some chickens, smiling at them all

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A nature art creation I made in the stones under the Blenheim covered bridge, which crumbled and fell a few years ago.

waterfall forest boy

waterfall forest boy

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the underwater shimmer of koi

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another forest nature picture, with a rose and white stones

my boo and me

my boo and me

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. 

sans octopus

“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.

“There is no way that writers can be tamed and rendered civilized, or even cured. The only solution known to science is to provide the patient with an isolation room, where (s)he can endure the acute stages in private and where food can be poked in with a stick.”

~ Robert A. Heinlein

Boo is much better.  He has had good days since Andy dropped him back at his residence on Monday, and he has made only a few, easily-redirected attempts at touching his eye.  Next Wednesday he will return to the surgeon doc so she can take a look at his progress.  I am extremely grateful today – for this good news of Boo…for my mother, whose calm & clean routine (and psyche) were so severely disrupted for far too long.  For my therapist and his insights…for all the friends and strangers and work clients who have reached out to me with such sincere caring and concerned support.

Today, though, I am particularly grateful for a new path I have chosen – one, in fact, chosen when I was perhaps just 8 or 9 years old: the path of the writer.  It is about as easy a path at which to eke out a living as is any art, which is hard as hell.  Finally, though, at the tender age of 43, I have done it – and in the most spectacularly amazing way, completely befitting my personality and skill-set.  Now I make my living entirely from writing, and from home, on my computer, often in my jammies.  Somehow I work far fewer hours and earn plenty — definitely enough — have amazing benefits and health insurance, and am working for (and with) an incredible group of philanthropists!  It is only my first week and already they have expressed great pleasure at my work.  The president actually told me it was an honor to be working with me.  Me!

I write and I write and I write, with the peaceful company of Jack the dog and Almanzo the cat as comfort and companions.  It is the bliss of one left alone to enter “the zone” a writer must find in order to have uninterrupted quiet to do what writers must do – what writers are compelled to do.  I am blessed enough to have always known who I am and what I should be doing; I am doubly blessed today to be actually doing it; I am thrice blessed to be working for a charity unlike no other – helping the working poor to become self-sufficient.  In fact the charity gives such a high percentage of its money to the people (and not to administrative costs) that it was a 2012 winner of the BBB’s “great non-profits top-rated award.”  There are anonymous donors matching contributions all the time, so there is virtually nothing that does not get to the people for whom these grant programs are designed to help.

I’ve been a faithful donor to this charity for more than 10 years, as it has always made sense to me as a place to give my money — where hard-working people can find one-time help to get past a roadblock which would otherwise send them spiraling into the cycle of poverty.  Now we are launching an exciting new grant program – and I get to be a part of doing all this good, while doing exactly what I love.  I can’t express my gratitude enough and am constantly uttering thank you…thank you…thank you….for this is all I have ever dreamed of and more.

There is the temptation to express disappointment and hurt at the deafening silence from my ex co-workers who have evidently forgotten me & the many kindnesses, acts of support, and affirmation I have shown to them over the years when any of them were faced with family tragedy, personal challenges, illnesses, or just because I felt like committing acts of kindness – for not a single one of them has shown me any support or even acknowledged me with so much as a card – and there were a handful there I really did consider friends.  But the hurt melts away when I realize I do not need to harbor any resentment or anger at all (and in fact it would be a waste of time) – for I am free now, and so very happy.  I can only wish them all the same.  Remember when Amy used to work here?

Thank you, God.

“Anyway” by Mother Teresa

People are often unreasonable, illogical and self centered;
Forgive them anyway.

If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.

If you are successful, you will win some false friends and some true enemies;
Succeed anyway.

If you are honest and frank, people may cheat you;
Be honest and frank anyway.

What you spend years building, someone could destroy overnight;
Build anyway.

If you find serenity and happiness, they may be jealous;
Be happy anyway.

The good you do today, people will often forget tomorrow;
Do good anyway.

Give the world the best you have, and it may never be enough;
Give the world the best you’ve got anyway.

You see, in the final analysis, it is between you and your God;
It was never between you and them anyway.

And so it came to pass that for 6 nights and 7 days following his eye operation, Jonah and his mother and father moved into Grandma’s house.

The story is too long to tell and, by now, amalgamated into one long, blurry, mess of exhaustion, irritation, frustration, worry, and a million rational & irrational emotions spanning the gamut of the human condition.   But I can provide some idea of the experience, sans hyperbole.

Each day Jonah attempted to remove his eye shield at least five times and usually 10 or more – and since it was vitally important for him NOT to touch his eye, each attempt required sudden and swift action, whether during day or night, in the car or the bathroom, while he was eating or running about or watching his favorite parts of  Willy Wonka and the Chocolate Factory.

And each swift action provoked Jonah, usually sending him into a rage whereby injury was inevitable and often severe.  These injuries occurred most often to Andy, since he was the only one with the strength to hold Jonah down while I cleaned the eye shield and re-taped it all across his face, attempting to close off any possible entry points for Boo to slide his finger beneath the tape and itch his eye.  Not to mention there were two different eye drops we had to give him, one twice a day and one four times a day.  Andy had borne a hole in the middle of the shield so that we could sometimes manage to insert the drops without having to undo all the tape and re-apply it again.

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We quickly discerned that any of us was unsafe sitting in the backseat of the car with Jonah, after he bit my mother’s arm 3 or 4 times, drawing blood, and, on a separate occasion, attempted (partially successfully) to rip out two handfuls of my hair while somehow simultaneously shoving his foot in my face.  Why not give up the car rides altogether, you ask?  Because the car rides were among the only time-eaters, one of the only ways to give Jonah any semblance of peace.  A thousand times a day, at least, he begged for car ride?  car ride? car ride?  wanna go see train?  train?  car ride?  wanna see train? car ride?  wanna go car ride?  wanna see train?  car ride?

I promised no hyperbole: a thousand times a day.  By Friday I decided to count, and got up to 87 in the first 15 minutes of the day (our days began whenever Jonah awoke, usually around 6:15am) before giving up.  It was maddening, the requests.  At times we temporarily lost the ability to feel any sympathy at all for Jonah in the midst of his incredible ability to spew forth repetitive phrases ad infinitum.  Oompa oompa?  he’d ask if he wanted Willie Wonka, which was our favorite request, for it meant we could sit or lie down with him while he watched.  He has no interest in the movie whatsoever until Augustus Gloop falls into the river of chocolate, but he adores the Oompa Loompas and most especially the end of the movie, where Willie Wonka yells at Grandpa Joe:  “You STOLE fizzy lifting drinks!  You BUMPED into the ceiling, which now has to be WASHED and STERILIZED, so you get NOTHING!  You LOSE!”

Unfortunately it was also his least requested thing.  In a vague order of repetitiveness, I’d say his requests were most often:  car ride?  wanna go see train?  breakfast san-wich?  take band aid off?  black donut?  lemm-a-made?  grandma?  all done?  (when he was being held for aggressing), and a variety of other things, usually uttered in rapid-fire desperation, for what he really wanted, I am sure, is to have that damned eye shield gone and his routine re-established.

On each car ride Andy played FLY 92.3 on the radio, which Jonah loves. Music?  he asked if it was not on, or loud enough.  This meant we were treated to the same 15 songs or so played over and over and over- YAY!  More mindless repetition.  I got a particular kick out of Taylor Swift’s song about the nostalgia of feeling 22.  I mean, isn’t that how old she is now?  Once I slipped Guster’s Easy Wonderful in the CD player – but within 4 songs Jonah was asking for radio.  I’ve lost the ability to guide my child’s taste in music – but then, what parent doesn’t?

We were at the train tracks in Voorheesville so often that we met all manner of railfanners.

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These individuals come from all walks of life and sometimes far away locales to watch (and often tape) the trains passing by.  They explained to us the pattern of the four lights, two on each side of the tracks, and what they meant.  Four reds was bad business and usually meant no train was coming.  We learned quickly not to say “four red lights” or anything even close to it within earshot of Jonah.  He often began begging for green light the moment we got in the car for a ride to the train.

that way?  he would ask, pointing in the direction he thought the train would be coming from

that way? he would ask, pointing in the direction he thought the train would be coming from

One day I snapped a picture of him actually smiling a little after we were lucky enough to see two trains!

note the ridiculous amount of tape all over his face in our attempt to keep him from touching his eye

Note the ridiculous amount of tape all over his face in our attempt to keep him from touching his eye

God forbid we had to detour from the exact route Jonah was used to while driving to the train.  One time the local convenience store (Handy Andy’s) was in the process of burning down, smoke reaching with fat, grey, angry fingers at the sky.  We had to go the wrong way, and there was hell to pay.  That way!  That way!  Jonah screamed, oblivious to the burning building and emergency vehicles everywhere.  To him it mattered not that flames were literally blocking our path; the only thing of consequence was that his route had been inexplicably disturbed.

One day he “eloped” (ran away), bursting out my mother’s front door, sprinting halfway down the street before Andy could even get out the door after him.  Andy had to drive his car halfway down the street and jump out in order to catch Boo, track-star of the year.  During the initial drive home from the surgery we had to pull over to replace the eye shield for the first time, and some passerby must have called 911 because soon a cop arrived to ask what the situation was.  Hmmmmmm…where to begin?

Sleep was elusive and usually impossible, especially for the first two nights.  My mother, bless her, slept on a blow up mattress downstairs so that Andy and I could sleep in her bed, each of us on either side of Boo, taking turns watching over him – parent-hawks protecting him from hemorrhaging, from the complete loss of the eye itself.  When there was sleep it came in quick REM lucid dream time, frightening images and nonsensical mazes which were difficult to shake off once awoken.

Lest I get any further caught up in the excruciating minutiae of every incident (and believe me I could write on and on), suffice it to say that by Monday (the day of Jonah’s follow up doctor appointment), there were four individuals on the edge of something frighteningly close to insanity and nearly at one another’s throats.

One final, comedic coincidence occurred just before we left to drive Jonah to the doctor; my right eye was bothering me all morning and when I looked into the mirror, its pupil was fully dilated while my left eye’s pupil was dilated normally.  So after Jonah’s check up, the doc took a quick look at my eye as well and, after an appointment with my own eye doc later in the day, it was determined that I’d gotten some of Jonah’s drops into my eye, causing the uneven dilation.  I’ve had quite enough of eye problems, thank you very much.

I’m bleary eyed (no pun intended) and ended up telling far more of the story than I thought I’d even remember.

The best part of the whole week was snuggling in bed next to my sweet sleeping son, watching him breathe deep, stroking his hair, his warmth and innocence — enjoying the mama moments I no longer can have.  That alone was nearly worth all the exasperation of the week.

When next I write it will be to tell a far different tale – a vastly better tale of redemption, miracles, and dreams come true.  For, as Guster promises us, “there’s a twilight, a night-time and a dawn” — and my own dawn has finally come.

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….

Never deprive someone of hope; it might be all they have.
~ H. Jackson Brown, Jr.

Early tomorrow morning Andy is driving Jonah up to Albany for an operation to remove the Retisert implant from his left eye.  (Turns out I’ve been spelling it wrong for a while).  I know that the chance of Jonah’s eyesight improving in that eye is slim, and we hate putting him through yet another eye operation, but still I have hope that it will help him to have the implant gone.  It is at best a foreign object doing nothing, and at worst something which causes his eye pressure to rise – and maybe even causes him pain.

Tomorrow and the next day will be a time of special vigilance over Jonah, to care for him when he (almost always) gets sick after awakening from the anesthesia, to ensure he doesn’t get any of his little fingers under the eye shield, and to keep him pain-free, occupied, and as calm as possible.  Andy and I and Jonah will all stay overnight at my mom’s, so we can take turns watching him and caring for him.  At the very least Jonah’s constant cries for “Grandma’s house?” shall be fulfilled.

On Saturday when my mom and I drove down to visit Boo, our spirits were somewhat lifted because he’d had a good week, for the most part. Again the pendulum swings without reason; after his eye heals, I would like to contact Jonah’s psych doc and titrate him off his meds, then start over with one med at a time.

Saturday Andy was very tired (he struggles with insomnia).  I tried to step up and help out more than usual so he could lie down.  I gave Boo his bath and offered him small sips of his beloved black soda.  I played straws with him on the floor, which basically means I make little house-like structures with colored straws and he gleefully knocks them over…or, in another variation, he dumps them all over the place and we sing “clean up, clean up” while he picks up two or three straws and I pick up the other 22.  Sometimes he’ll help me sort them by color, but he wasn’t having any of that this day.

We went outside to blow bubbles —  I hold it?  — Jonah asked after I blew a stream of bubbles into the air.   I put bubble solution on the mini-wand and handed it to him, and he blew way too hard and spazzed the solution all over himself.  He didn’t seem to mind; he simply handed the wand back to me and watched some more of the rainbow orbs fly past him into the air.

Then I got on Andy’s computer and showed Jonah the video of him swimming in a Cape Cod hotel pool when he was seven.  Interestingly enough, Jonah is at his heaviest in the video (and has moon-face from steroids given to him to combat the the very beginnings of all these problems with his left eye).  At any rate, it had been a while since I showed him this video and he shrieked with delight, watching himself swim.  I asked him if he wanted to watch the video of him singing Guster, but he kept asking for the swimming video, so we watched it 8 or 9 times, each time Jonah screaming in excitement.

Finally, I entered “train” into the search box and, thanks to all the rail fanners, there was a plethora of videos of trains approaching and chugging along.  We found one of a nice, long train….the approach, the gate lowering, the lights flashing, the rhythmic noise growing louder and louder, and the cars passing by, providing Jonah with a visual ecstasy I don’t quite understand but can certainly appreciate.  Instead of shrieking, this time he stood mesmerized, his eyes following each car, never growing bored even though this particular train was at least 100 cars long.  A few of these videos kept Boo occupied for quite some time – all in all, enough for Andy to have a quasi-nap (if all the screaming and shrieking didn’t wake him).

And so Saturday served, also, as an early Mother’s Day for me and my boy.  I was a little disappointed that his teacher at school didn’t have the kids make something for their moms, but at least I got to spend some fun time with him.  And tomorrow and Wednesday I’ll be spending all my time with him, gladly, even though it will likely be exhausting and scary.

I hope the operation goes well.  I hope Jonah doesn’t get too sick.  I hope we can keep him pain-free.  I hope his left eye’s vision is somewhat restored, or at least not damaged further.

I hope.