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Archive for the ‘iritis’ Category

Yesterday was Harvest Fest at Jonah’s school.

I did something very similar to my dorm room door, junior in college – only we glued real leaves to the wall…

We visited his classroom and spoke to his teacher, who gave us a folder full of Jonah’s work sheets and art, then told us Jonah has good days and bad days, which is teacher-euphemism-talk for he’s really difficult, randomly, and it’s frustrating. He is one of the most verbal kids in the class, so they don’t use PECS with him anymore.  I guess Jonah has a vocabulary of sight words and he really loves occupational therapy.  His teacher is young, pretty, and interested, with a sharp mind for noticing important things and a kind heart to care about the children.

There are teacher’s aides as well in the class, and occupational/behavioral therapists, and art/music teachers, and they all work together to educate these mysterious children like my Boo.  Amazing.

What a beautiful day, too, sunny and warm and autumn-pretty – after visiting the school, we walked to Jonah’s house and then to the recreation center, where they had bouncy bounces set up, grills cooking up yummy food, and activities for the kids.  We waded through the groups of kids and teachers until we found Boo.

They’d actually managed to get him to wear this headband with two curled black pipe cleaners and red leaves on the end of each one.  He used to hate stuff on his head — hats, hoods, Halloween costume accessories.  When or why or how this changed, I have no idea.  In some ways Jonah is very malleable; he morphs almost magically into a different kid, one little corner of his brain making seemingly arbitrary decisions in matters of head coverings and food preferences, who he requests to be with him in the backseat, what he wants to drink:  appoo ci-der?  milk?  cranbewwy soda?

When we caught sight of him, he was standing next to one of the picnic tables and seemed to be doing okay, but as soon as he saw us, he wanted out.  And so he got a bear hug from Pa (my dad) and then my mom and Andy and I brought him to Andy’s apartment.

Jonah’s newly renovated house – Jonah’s window overlooks the playground behind it, and the pool behind that.

Jonah leads the way to the car.

Jonah being silly as his dad helps him with the car harness

When we’d completed our usual tour of bath, lunch, and car ride, Jonah requested the “grow-shee-store?” At the self-checkout lane Jonah started screaming in what I can only describe as “obnoxious joy.”  I told Andy to go ahead and take him out while I weathered the stares (usually Andy’s privilege) and paid for the food.

And after we’d been back at the apartment for a while, my mom and I left.  My car drove us home okay, but when I tried to run to the grocery store later in the day, the steering wheel was shaking and the car pulled heavily to the right.  I guess tomorrow I’ll have to drive it (gingerly) to the shop by my work and leave them a note with the keys.  Sigh.

I was just thinking:  It has been a long time since I cried over leaving Jonah behind each week.  I don’t know what that means, if it means anything at all.

I will also tell you this little not-about-Jonah story:

With my favorite pastor ever (the recently retired Father Noone) I’m joining a committee to support a school being built in Fontaine, Haiti.  Father went to Haiti and helped cut the ribbon on the opening of the first three grades.  The money needed to build the school (and, before that, a well) was in large part funded by special collections at the church from which Father Noone retired.  And now, that same church has explained to Father that, due to financial challenges, they will be unable to continue to support the Haiti project except for a second collection twice a year (or something equally lame).

Disappointment at this decision aside, I am helping Father Noone raise the money needed to keep the 105 students there for another year.  It’s just $300 per child.  That’s $25 a month for a year.  Or, as the commercials like say, “for just pennies a day” — but it really is true.  Hell, you could spend $300 just buying school clothes and supplies here in the states.

These are children who would otherwise have to walk 4 miles a day round-trip to school in another town – in a country whose villages have no electricity nearly three years after the 2010 earthquake.  Unimaginable.  Try to picture that happening here, how enraged we would all be.  Hell, I remember an ice storm some years ago and being frustrated at its four day interruption of my normalcy.

Anyway, if you can help (in any amount), please click on the link and donate from there.  If not, I’ll never know.  I wouldn’t judge even if I did.  Every cause wants money.  I just want to help Father and this school he believes in as much as I can.  This quote by a wonderful author (who had to write under a male pen name to get published) describes Father Noone perfectly —

“In spite of his mildness and timidity in reproving, every one about him knew that on the exceptional occasions when he chose, he was absolute. He never, indeed, chose to be absolute except on someone else’s behalf.”
George Eliot, Middlemarch: A Study of Provincial Life

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kiss eye

Thank you all for lifting me up with love and light and prayer.  I know I am biased but my boo really is so brave and amazing.  Jonah was great on Monday for his eye operation, even though we all had to be there at 6am, and I was very proud of him (after I stopped being nervous – when it was all over).

the way he sits and holds his body and arms/hands is very much like his mama

I gowned up to walk him in the OR and be with him while they gave him his mask for the anaesthesia.  The nurse was kind and treated me with kid gloves.  “You may see his eyes roll up in his head,” she gently warned.  I remembered that horrible first operation, how I sobbed and begged the people in the room to take care of my boy.

“This is his third eye operation,” I answered, “so I’m kind of used to it now – but thank you.”  How kind they were.  As soon as his eyes closed and he relaxed back onto the operating table, I kissed Boo and left the room.

While I was sitting with my mom in the waiting room, the reception desk phone rang and they called my name.  My mother and I looked at each other, trading fearful glances.  It hasn’t been long enough.  And then to make it worse, they tell me it’s Dr. S (the surgeon) on the phone.  But only to tell me the surgery is over, that Jonah did fine, that he is in recovery.

Soon afterward we were at his side as he groggily asked for ice cream.  They did let him have red popsicles, and he ate three.  His left eye was weirdly wide-opened and dilated, but not oozy or yucky and he kept blinking it shut hard.  It was as if it wasn’t quite painful or itchy (and of course I don’t know) but rather sensory-deprived.  He wanted pressure on the eye.  “Kiss eye,” he begged me over and over.  I told him to close his eye and I kissed the eyelid.  He smiled and giggled; grabbed my hand to pull me closer. “Kiss eye,” he said again.  I must have kissed his eye a dozen times.

My brave, wonderful boy.  They drove him up again today for a follow-up visit with the doc/surgeon, and this time my dad came with us.  Jonah was amazing again.  He read the eye chart and held the little black instrument to each eye (and yes, he tried to cheat again), he put his little chin into that scary eye machine, he tipped his head back for the eye drops, and he was calm through examinations with scary looking instruments.  To be honest, he is better at the eye doctor than I am.  I hate having drops put in my eye, and when they don’t explain to me what’s happening and what exactly they are going to do to me, I get physically sick.

Before both visits Jonah paced small circles and asked in the van? (meaning can we please get the hell out of here now?)  Today I used new Strawberry Fields tic-tacs and pomegranate seltzer (which he dubbed, of course, white soda) to treat him.

He immediately identified the tic tacs as candy and started asking for them as such.  I’d give him one or two between procedures, instructing him to chew.  He was so good and so happy.  I know this sounds weird but it really made my day.

The day started off shitty, too.  It is the 10th anniversary of my best friend Gina’s suicide.  Now she has been gone longer than I knew her.  This morning was awful, with me walking around weeping and poisoned by putting on grief, dressing myself in it as a burden in martyrdom…but M, Andy, & my friends/readers loved that nonsense out of me.  Thank you.  And Gina, watching over my boo, guardian angel style.  Thank you, Brother Peen.  I love you.

It turned out to be kind of an amazing day.

Jonah and “Pa” (my father)

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