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Posts Tagged ‘eye operation’

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

Mignon McLaughlin

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

Jonah and his "octopus."

An older picture of Jonah and his “octopus.”

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

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

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

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

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

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

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

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

Coming in for a hug with daddy.

Coming in for a hug with daddy.

Sitting on mama's lap

Sitting on mama’s lap

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

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

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

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

I was so proud of my Boo.

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

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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.

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Hi everyone

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

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

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

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

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

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

waking up right after the operation

waking up right after the operation

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

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

Back as soon as I can be….

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

He played a little…

… but was mostly very tired.  Yawning...

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

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

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

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

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

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

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

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

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

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

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

Sometimes I want to know nothing at all.

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

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

Then we drove to the park, and visited the ducks

and he got to swing on his favorite swing

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

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

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

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

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

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

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