The Never Normal

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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