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Posts Tagged ‘Albany Medical Center South Clinical Campus’

Resentment: Def. A feeling of indignant displeasure or persistent ill will at something regarded as a wrong, insult, or injury – real or imagined.

Andy has brought Jonah to three post-op doctor appointments this week.  God knows what would happen if he did not live where he does and have the job(s) he does.  E and J have been unable to bring him to his last 4 appointments.  What does the school do if there is a child who needs an eye surgery and doesn’t have the transportation to get there?

The laser surgery was medically successful, at least initially, but I had to take the whole day off Monday because everything happened excruciatingly slowly.

This video shows Jonah, gowned up and ready to go, stuck in a room Does he like Dora? the nurse kindly asked and we said yes and we said sure and we said thank you when all we wanted was to get going. Andy is standing between Jonah and me as Jonah walked his circles in the small space of the room.

Five minutes after this Jonah had a major flip out, throwing himself on the floor in the hallway, kicking, screaming, pulling hair, biting.  Nobody came out to help us.

Eventually we got him back to the room and calm.

O

The operation itself was quick.  Jonah got sick afterwards and kept wanting to itch his eye.  so I used a tissue to gently press on the eye, and I kissed it soundly, over and over.  Kiss eye?  Kiss eye?  Yes, Boo.  Kiss eye.  Of course kiss eye.

O

It was more difficult than usual to send him back to school, an hour and a half away from me, where I see him so infrequently and have so little control over what happens to him.  I have to trust.  One of the check-in people on eye operation day noted that Jonah was at a residential facility.  She mentioned that her daughter was autistic and how she would never, ever trust anyone to take her precious baby away from her.  “I don’t trust nobody with my baby,” she declared.   It was as if she had slapped me in the face.  Who says that to someone whose kid is already in a residential facility?  What do you know about why we did it?  I wanted to yell.

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Jonah & Andy, walking the halls before the room where you gown up.

– – –

And so I crawl along, filled with dread, with grief and terror for this world, with my heart broken for those at Sandy Hook in CT.  I read all the intelligent arguments about mental illness, parenting, gun control, and violent games/TV, and I find no answer in my heart — and that, maybe, is what frightens me most.  My mental state becomes fragile when I am confronted by humanity at its worst.

Which did not help when very recently I was the target of verbal anger, delivered in front of others and with a ramped-up rage that left me in disbelief, filled with embarrassment, and completely stunned. Despite a nonverbal apology later for the “confusion,” (not the behavior), I think maybe too many people enjoy railroading over people like me, who don’t fight back.  One witness, upon seeing my face fall, told me coldly to “suck it up.”  Maybe I really don’t belong in society, such as it is, because that kind of behavior seems so foreign to me that I have no response but tears.  It will pass, it always does, I regain the strength and something restores my faith and I keep on going.

Yet there is a lot that’s wrong with all the people in this world.  With our priorities and with our ignorance and with our anger.  All of us.  There are a lot of things one can say about me but I will say this for myself:  I may be meek, but I am kind, and I don’t take advantage of people’s weaknesses or vulnerabilities, and I care about how other people feel, and I have never treated anyone the way I was treated today.  So perhaps people like me really shall inherit the earth, like the Bible says.  Watch out then, bullies, because things are gonna get a whole lot more mellow. (Quite rightly).

If I were a Buddhist all of this would play out in my head and heart quite differently.  I would be thankful to this person for their challenge to my ability to be compassionate and understanding.  I would consider them my teacher.  I would not only forgive instantly but also revere the perpetrator – very similar to Jesus’ “turn the other cheek.” That’s some serious shit to truly take on, though, which makes me admire earnestly practicing Buddhists and Christians all the more.  Perhaps I should just up and go to Plum Village for a while.  I need to pound the lessons into my head.

Of course this whole story – every little bit of it – is nothing compared to what has happened and continues to happen in Newtown, CT.  Burials, burials.  An entire community with post-traumatic stress disorder.  Pain-filled awakenings from nightmare hours of darkness.  God only knows the horror.  God help all the mourning people. I just can’t muster much joy in Christmas this year;  I have had the wind knocked out of me and am only a stranger, miles away.  But I can pretend, and the pretending will become real.  Smiling begets smiling.  Breathing allows for release.

Hope.

At least I am still able to crawl along.  To let go of the resentment.  Breathe, breathe.  Let it go… Feel gratitude.

I’m a Weeble, you see.  I wobble, but I don’t fall down.

Weebles just, well, rock on.

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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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