The Never Normal

I was showing M’s daughter J the picture from the last post, of Jonah dining at his salad bath bar.

“That’s kind of gross, right?” she asked in her raspy 8-year-old way.  I laughed and said Jonah sure was silly.

All I could think of was that Seinfeld episode where Kramer decides he doesn’t ever want to get out of the shower again.  “This is the place to be!”  he rejoices, calling friends and making dinner from the comfort of his steaming stall.  I’m in the 1% of people who never saw Seinfeld the first time around, so once in a while I actually catch an episode I’ve never seen.

And so Jonah too loves his warm water, for bathing, eating, or just hanging around.  He can brush his own teeth but Andy or I give him a good brushing every once in a while.  He’s pretty good about it:

I didn’t mind the rain and chill this weekend.  Jonah wasn’t great yesterday and he grabbed at me a few times.  I cried a little but it wasn’t because of that.  If I can’t take a hair-pulling or a glasses-grabbing by now, I’m the wuss of the century.

Once again we kept the grocery store rotation in the mix.  Jonah did really well, if you forgive him eating while shopping (we always pay for whatever it is) and the opening of the milk and drinking from it at the register.

bottoms up!

Mostly I was tired.  A week from tomorrow he’s got to go back for laser left eye surgery again.

I am tired of having no shield with which to defend my son from pain and surgery, from frustration, from his different perception.  It’s all another type of person’s world, and he is so innocent of that world.  All of it.  He is such a toddler still in so many ways, and then almost entering puberty as well.  So many changes…and so much feels impassible in spite of it.

Every so often I will be sitting on the couch, maybe, with no noise in the house — or in the car when the light turns red — and I’ll think I don’t have my boy or I can’t keep him safe — and where once the words would burn and hurt, now they lie like stones on the ground.  They are things I must walk on, over, across, to get to where things are different.

Hannaford, yo!

“We’ll be fighting in the streets
With our children at our feet
And the morals that they worship will be gone
And the men who spurred us on
Sit in judgment of all wrong
They decide and the shotgun sings the song

I’ll tip my hat to the new constitution
Take a bow for the new revolution
Smile and grin at the change all around me
Pick up my guitar and play
Just like yesterday
And I’ll get on my knees and pray
We don’t get fooled again
Don’t get fooled again

Change it had to come
We knew it all along
We were liberated from the fall that’s all
But the world looks just the same
And history ain’t changed
‘Cause the banners, they all flown in the last war

I’ll tip my hat to the new constitution
Take a bow for the new revolution
Smile and grin at the change all around me
Pick up my guitar and play
Just like yesterday
And I’ll get on my knees and pray
We don’t get fooled again
Don’t get fooled again
No, no!

I’ll move myself and my family aside
If we happen to be left half alive
I’ll get all my papers and smile at the sky
For I know that the hypnotized never lie

Do ya?

There’s nothing in the street
Looks any different to me
And the slogans are replaced, by-the-bye
And the parting on the left
Is now the parting on the right
And the beards have all grown longer overnight

I’ll tip my hat to the new constitution
Take a bow for the new revolution
Smile and grin at the change all around me
Pick up my guitar and play
Just like yesterday
Then I’ll get on my knees and pray
We don’t get fooled again
Don’t get fooled again
No, no!

YAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAH!

Meet the new boss
Same as the old boss…”

Won’t Be Fooled Again; The Who

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Monday and Tuesday were two weeks long.  Two months, two years, I don’t even know.  Monday morning I had the worst headache of my life accompanied by extreme light sensitivity and puking all day long.  Praying to God to help help help please help me until I couldn’t take it anymore and at 8pm M drove me to to St. Pete’s where they gave me IV liquids and morphine and some other stuff, then gave me a CAT scan and spinal tap.  Maybe when you get your first migraine at the ripe old age of 43 and it’s this bad, they are concerned there is bleeding on the brain – but that ‘s been ruled out.

We got home at 4:30am and fell into bed exhausted, where I got 4 hours of beautiful wonderful sleep before I woke and it started all over again.  M tried to take the day off to stay with me, but he had to go to work so I took the pills they’d given me the day before – the ones to stop the nausea and headaches.  Two minutes later they were gone from my stomach, along with half a cracker and sip of water I’d tried to eat with them.  BAM BAM BAM went my headache.

I called my mother and bless her she came and dropped me off at St. Pete’s.  Tears fell down my cheeks as I retched into the kidney-shaped dish they give you and waited for the blessed IV.  I’d rather go through labor again. But by the time I left the hospital this second time, I had slept a little and was actually feeling hungry, headache gone – a blessedly pain-free state.  Thank you thank you thank you.   And now I  have the name of a neurologist to call and see, so hopefully they can tell me what to do to prevent this hell again.

They instructed me to stay in a dark room for 12-24 hours and I understood completely.  Never having been a fan of light, particularly artificial light, I am happy to just be for a day, to sit in the dark, hope this is really over.   I’ve slept and woken to my dog Jack pressed against me – his concerned black-rimmed eyes meeting mine..his occasional lick to my cheek.

I once saw a TV show on Discovery, I think, about people who had such constant, debilitating migraines that they had to take oxygen tanks everywhere they went – that it was the only modicum of relief from the perpetual agony.  I remember feeling horrified.  I had no idea.  I now wonder how they don’t give up.  I have a whole new empathy for people who have ever had a migraine.

I have eaten toast and kept down coffee, and tomorrow I’ll see my regular doc and go back to work.  I need to do well at work right now, and this didn’t help matters.

And now for Boo…a rocky road lately, Andy and I call him “squirrely” when he is with us and he gets this way; it’s difficult to describe how it begins or even what it is at first – an extra hard and very “slappy” high-five, maybe, with a face that dares you to do something about it.

We don’t know when he’ll be like this – or why – the infernal why –  at school he’s had managements this week, both in class and at his house, grabbing at glasses, flipping out – impatient and angry.  Last Saturday we went to the grocery store – Andy and he and I – me walking along, proudly filming a documentary of my son negotiating his cart quite nicely.  It’s really kind of boring for most of its 5 minutes, I suppose, but he falls apart toward the end – and when Andy asks me quite patiently to turn off the camera and help him, you can see why the video abruptly stops.

It’s all okay, though.  I know we can get through this, I know we can do this.  And, as always there is such joy in my Boo.

Mama’s proud that Jonah eats salad. He’s got a tuna fish sandwich there too, and he’ll try just about anything.  That apple fell far from MY tree.

Splashing around in the Rhinebeck boat launch

…and finally pushing off to go for a swim…

Mama with Jonah on the swings, smiling at one another…

Happy Jonah signing for more ‘white duck’

Jonah and his daddy, walking toward grandma

Even at the doctor’s office, mostly he is happy

…and I, today, bathe in gratitude, of course mostly from relief-of-pain but also for all the people who have cared and helped and loved me through these two-year two days,  and for Boo’s journey, wherever it may take us — because it is always silver-lined with joy.

Thank you.

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There is a lot to say about my vacation (to Mansfield, Missouri – home of Laura Ingalls Wilder) and also my ‘blog vacation’, which has extended beyond my return.  I can post some pictures of the trip but not of my most recent visit with Jonah, because I downloaded the vacation pictures and promptly lost the camera-to-computer cord.

I have accepted a few writing gigs, met a deadline for my monthly column in the Capital District Parent Pages, and judged entries for a “human interest story” ARC media contest.  (The acronym ARC used to stand for The Association for Retarded Citizens but we don’t say retarded anymore and I’m not sure what the acronym stands for now).  Most of the writers used the acronym without explaining it, as though the whole world understands what the ARC is and why it exists.  Several of the entries made me cringe;  one even made me cry.  It was hard to judge.  Who the hell am I?

So I met the Anderson peeps at Jonah’s eye appointment on Friday –and the doctor was really pleased.  She said the Humera is helping his right eye significantly.  Jonah was awesome-good and cooperative for every exam, my brave little boo.  (He did try to cheat by moving the plastic piece with which you’re supposed to block one eye).

Part of the reason he was able to be good is that E called me to warn that the eye doc office contacted her to tell her the appointment would be 2-3 hours long.   Evidently they planned to update his records because they’d switched from one software to another or something, and so entries would be made as we went along – from the check in to the eye test to the doctor herself checking his eyes.

I told her, “don’t worry, that’s not going to happen,” and then I called the office the next day and explained to the new (?), kind receptionist (also named Amy) how Jonah is not a kid who can wait, and unless they want him screeching, rolling around on the floor, and quite possibly attempting to aggress toward the mostly-elderly waiting room gathering, they’d better have us arrive when the doctor is ready to see us.  I was actually really calm and nice about it.  It’s for everyone’s benefit, believe me.  Amy worked her magic and told us they would come down to the parking lot and get us, so we wouldn’t have to wait.  God bless Amy.

E came with Mo instead of J, who’d gotten in a motorcycle accident and was out of work on sick leave, which I’m very upset about because I loved him and he was really very good with Boo.  Mo was cool but he’s not J.

Now I’m trying to help someone whose family is going through what we did during the months before Jonah went away to Anderson – a disabled child pulling hair, hitting, destroying things at home, pooping & smearing, and a school district with a reluctance to place him in the residential care he needs.  The mom e-mailed me today looking for advice.  I don’t know a lot, but I know a lot of people who know a lot.  I’ve said I wanted to advocate for others, and so here I go.

I leave you with some pictures from my trip.  Hopefully I find my camera cord soon (I have yet to pray to St. Anthony) so I can show the sweet pictures and video of Jonah by the river on Saturday.

I’m hugging a bust of Laura in the town square, as it were, while rocking my Laurapalooza shirt my friend K made me. HAPPY EXCITED ME.

Laura’s 10 room farmhouse, as she left it when she died in 1957 (three days after her 90th birthday).

Geek. You get the idea…

We ate at Hemingway’s Restaurant in the world’s largest Bass & Pro shops which, though I had no desire to go, was unbelievably cool.

…they had live turtles…

…and huge tanks of fish…

..the place is so hard to describe…

We went to the Dickerson Zoo and fed giraffes eye-to-eye from a tall platform

We visited The Pythian Castle and met a whippet dog named Trinity who was about to give birth. The dungeon part was creepy as hell. Lots of history in this place built in 1913…

…and we even saw Wilford Brimley at the airport. Lots of people look like Wilford Brimley but I’m positive this was really him. Truly.

Amy Ingalls Wilder, grinning wide.                  Laura Trip 2012 accomplished.

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