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Archive for the ‘glaucoma’ Category

On Thursday the 7th, I took time off work for Jonah’s quarterly glaucoma doc appointment.  Two Med Run Peeps drive him the 90 minutes up to Albany every time in the Anderson van; Jonah rides in the way way back, transported like His Majesty the Prince of Rhinebeck.  I was very much looking forward to seeing him.  It has been a long, long stretch of time since Boo has had an aggression.  Since maybe October.  I was hopeful he’d be glad to see me.

The stars were aligned this day.  It was Laura Ingalls Wilder’s 152nd birthday, the Med Run Peeps were being their awesome, caring, kind selves, and Jonah was cooperative and happy.  Silly and funny.  Amazingly good.

Even more so when you consider that, unlike most visits to this doc, we had to wait a while; they wanted to take a scan of Jonah’s eyes before he saw his regular doctor.  So we moved to an empty area of the waiting room, where geriatrics henceforth feared to tread – though those with vision watched us curiously and not unkindly.  Jonah laughed his brash, loud laugh, pacing up and down the row of empty chairs.  He hugged me and asked for more kiss? again and again.

My son is nearly a man.  In a photo, he sometimes looks like a regular kid who is 16-going-on-17.

In person, though, there is no mistaking him for a “normal” teenager.  His disability is as visible as if he were in a wheelchair, and to be honest I don’t mind that.  In general, people are more compassionate now.  When Jonah was very young – until he was 10 or 12, really, this was rarely the case.

Back then, to some, Andy and I were bad parents of an out-of-control kid.  Once, an autism-denier went so far as to comment that I should give him Jonah for a week and he’d “straighten him out.”  (I think his comment is still on that long-ago post).  I remember how tempting it was to let him try… just to sit back and watch Boo kick his ass.   If there is anything from those darkest days I miss, it’s the secret evil pleasure of watching Jonah attack a smug doctor who’d ignored my earnest warnings of severe aggression.

I talk about the pendulum swinging: aggressions and respite, hope and despair – our cyclic existence with no real patterns upon which to prepare for the next “season.”

Dare I pretend
to hope
to believe
Jonah’s aggressions have disappeared altogether?

Since autumn of 2010, I don’t think he’s ever gone this long without aggressing in some way against someone.  He still gets squirrely, and he’ll swat or “flinch,” as the school calls it, motioning his hand in a warning.  It’s the rattle of the snake, and yet nothing comes of it anymore.  Now it is an end unto itself.

His awesome teacher Sophia wrote me yesterday that he had zero flinches this week.  Not just zero aggressions. Zero flinches.  My hero zero.

I’m proud of my son.  I think he’s worked hard with the wonderful teachers & caregivers to learn how to manage his feelings.  Fred (Mr.) Rogers said he wanted to teach children that feelings are mention-able and manageable.  It may well be one of the most important lessons a person can learn.

The rest of Sophia’s email to me reads:  “This week we learned more about coins and bills, we celebrated the Chinese New Year, the Phases of the Moon, we did an experiment with Oreos to show the phases.  Jonah enjoyed the part where he got to eat the cookies!  We made a banana sushi roll today during Group OT and we also enjoyed a nice walk outside!”

I was so happy to hear about his week and know he spends time learning in ways that are fun and comfortable for him.  When he first arrives at the classroom, he gets under a beanbag chair and blanket for a while.  They recognize he needs to start his day this way and I appreciate that.

And so Jonah is well, and happy.

The rest of this post involves another disappearance – so if you’re here just for Jonah news, all done. 

Every day when I get home and don’t have to go out again, it is my custom to take off my winter ‘office work boots’ I wear nearly every day and place them next to the radiator in my bedroom.  So on that same day – Thursday, February 7, I came home from Jonah’s appointment and put the boots where I always put them.

That night I woke up at 1am mid-migraine, head pounding hard.  I immediately got out of bed and took the med that stops my migraines about 50% of the time.  Then I stumbled into the bathroom and, without turning on the terrible light which has become my nemesis, found a washcloth and ran very cold water over it.  I returned to bed and nearly started crying in despair for what I knew was likely coming:  the 24-36 hour marathon of puking, even the tiniest sip of water rejected; dehydration and retching causing my head pounding to worsen and the head pounding causing nausea, on and on in a nightmarish underworld where there is only pain and the desperate desire not to be in pain.  In those first minutes lying down with the cool cloth, I prayed.  I prayed the fervent, frantic prayer of one willing and ready to strike a deal with Divinity.  Please, please, let this migraine subside and I’ll do anything.  You can take anything from me. Just make it stop.

And lo, on this day in the year of our Lord twenty nineteen, the migraine stopped, blessedly subsiding into nothing – the pain retreating as if ordered to cease and desist.  I eased into unconsciousness before I could pray or even think my thanks.

The next day I awoke…

…and, as part of my every day morning routine, got dressed, reached for my boots…

And this is what I saw:

One boot.

I looked under the bed.  No boot.  In the closet.  No boot.  After a while I didn’t have time to look anymore so I found my old pair from last year and wore them instead, telling myself I’ll find the other one later.  After all, how hard can it be to find a knee-high boot?  Yes, I lost 3 books of holiday stamps after New Year’s, but those are stamps.  This is a freaking boot.

Only later that day did I realize I’d promised in my prayer the night before to give anything for the migraine to go away.

The only conclusion I can come to is God took my boot.

It is now the next day, Saturday, and my mother’s birthday (Happy Birthday Grandma, says Boo).  I have conducted a thorough search for the missing boot.  I have looked in ridiculous areas and places where no boot could ever hide.   As of this writing I have no explanation, and I’m trying not to think about it all too much, lest it freak me out completely.

If after my death I am deemed so wonderful as to be considered for sainthood, could this missing boot count as my required miracle?

The world may never know…but I’ll keep you posted if I find it.

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For a while I was a mother, the way other mothers are.

For nine and a half years.  I remember it.

I remember watching Jonah sleep, changing his diapers, helping him get ready for school, taking him to the park and home for dinner.  There were birthday parties here with family gatherings in our finished basement.  We played in the baby pool and Andy took us sledding.   I also remember how hard it was, how fucking frightening and relentlessly backbreaking our days became toward the end – and I sit here grateful for the stillness in which to type these words, I do.

But at the same time I feel a vicious, raging kind of helpless. When I get home from visiting my son, I’m angry.  I want to scream and moan and rave.  I slam my vacuum around the house, cleaning things just to feel some control over my environment.

There are things to say but I don’t want to say them, so I stay off the blog.  I don’t have any funny or engaging stories.   And when I read over these blog entries I make myself sick with all the whining and the wretchedness.  I wish I had better news, some anecdote to share.  I only have what I have, and I can only feel how it feels.

Things were looking pretty good on October 1 – they made Jonah Student of the Month, even, and his name and photo were on display in the front of the school.  I took a picture of the display case when I visited on Open House day, but I can’t find it now.  The school sent a certificate and a letter about how well he had been doing.  It was all really encouraging and cool.

They forgot to knock on wood when they said it, though, because it’s been all downhill from there.

Our visits with Jonah are worse.  I used to complain – recently, even – when he’d come running into Andy’s apartment and then just stand in front of the refrigerator, asking for whatever he felt like eating and scarfing it down before next asking for car ride.  Now car ride is all there is, and by that I mean we pick Jonah up at his residence and he says “no apahmen” and “no lunch” – and while my mom waits behind with whatever food she’s brought us for lunch, we drive the same loop over and over.

The best we can do to facilitate some sort of visit with my mother is to stop back at the apartment after every loop and try to bribe Boo to come inside.  Not bath nor Burger King is temptation enough – and forcing him would mean a huge aggression episode the likes of which none of us are willing to cause or endure.  And so we pause in the driveway and my mother comes out.  Sometimes Jonah will put the window down and we will prompt him to wave or say “Hi, Grandma” or parrot back whatever script we want my mother to hear.  Wish she could hear.  Thank you, grandma.  Thank you for ritually packing us all fresh sandwiches, chips and drinks every week.  Thank you for picking up mama to drive an hour and a half each way to sit in an empty apartment, visiting with me through a car window for a minute or two, because you love me so much you’ll do whatever you have to just to see me, hoping I’ll be happy or will want a kiss.

On Thanksgiving, Andy drove Jonah up to my mom’s house, just like he’s done every year for the past 6 Thanksgivings since Jonah’s been at Anderson.  Always Jonah loves grandma’s house.  He jumps out of the car and runs in, bursting through the door to pace around and survey his surroundings.

But not this year.  Even after that long car ride up here, he wouldn’t get out of the car.  My father arrived just as I was getting into Andy’s car to take Jonah for a ride to see train.  We called out the window that we’d be back, and my dad went inside to wait for us.  Jonah smiled, a big smile, when two trains came by, once we got to the Voorheesville tracks – but when we drove back to the house, Jonah still refused to come inside.  No grandma.  More car ride.  Awkwardly we all stood in the driveway, my father, my mother, and me – speaking to Jonah in turns and making sure Andy had all his Thanksgiving food my mother had prepared in Tupperware containers.

Andy and Jonah drove away, and my parents and I went back inside.  My mother and father tried valiantly to keep some conversation and normalcy in the day,  but I just sat there silent and crying, the tears coming against my will, hot and unchecked.  After just a short while I apologized and told them I couldn’t do it, I had to leave.  I drove home to eat my own portion of yummy Thanksgiving food and then, exhausted and sad, crawled into bed.

My mom and I didn’t drive down to see Boo again until today.  Again, Jonah just wanted car ride – only this time he got really sad and started crying as well – huge, gasping sobs.  I turned in my seat, gave him a clean blue t-shirt rag for his face, and held his hand in mine.  He didn’t resist.  He felt along the length of my hand with both of his, grasping my fingers, crying in earnest.

img_20161204_100622204

I asked him to tell me what was wrong.  I asked him several times, in all different ways, hoping he’d offer a clue.  Was he in pain?  He never tells us when he is hurting, but he’d just had yet another laser operation a few days ago, to alleviate the pressure in his left eye.  It shouldn’t be hurting him today.  And he seemed fine when he first came out of his residence on the campus.

And so he wept, and I just held his hand.  Andy played some of his favorite music, and eventually Jonah calmed down enough to gently push my hand away and request Tom Pah-dee (Tom Petty), Public Enemy, and Prince, in that order.

After three trips and visits back to the apartment where grandma came out and said hello, I finally got out of the car, kissed Boo, and waved goodbye.  My mom and I drove home, mostly in silence, feeling how completely surreal can fill a car like heavy smoke.

What more can be taken away? Even as I ask myself the question I hear the answer. What if, one day, Jonah refuses to leave his residence for our visit?  What then?  They don’t allow visiting in the houses.  There’s a visitor’s center on campus with mock apartment set-ups that seem really nice – but Jonah’s never wanted to go there.  We tried it once and it was a disaster.  And anyway, even when he was going to the park or down to the dock, he still wanted his car ride and to get off campus first.  Can we visit him on one of the campus playgrounds?

Tomorrow I talk to the school district about the possibility of Jonah attending the Kennedy Krieger Institute for their short-term impatient program.  And I probably will call Jonah’s caseworker, too, about how home visits have been deteriorating.

Maybe they will have some ideas.  Me, I’m fresh out.  And done writing about it, for now.  If I do not post again before Christmas, I wish you all happy and blessed holidays, filled with joy and hope.

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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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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.

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

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

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

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

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

What a deliverance. 

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

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

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

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

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

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

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

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

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

happy boy, waiting in the lobby

Happy boy, waiting in the lobby

walking into the eye doc office

Walking into the eye doc office

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

…and being a really good boy for his ultrasound!

It was damn near a miracle.

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

Thank you.  Thank you.  Thank you!!!

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